FW4

Family Health Care

Nursing Theory, Practice, and Research

fifth edition

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Joanna Rowe Kaakinen, PhD, RN Professor, School of Nursing Linfield College Portland, Oregon

Deborah Padgett Coehlo, PhD, C-PNP, PMHS, CFLE Developmental and Behavioral Specialist Juniper Ridge Clinic Bend, Oregon

Rose Steele, PhD, RN Professor, School of Nursing, Faculty of Health York University Toronto, Ontario, Canada

Aaron Tabacco, RN, BSN Doctoral Candidate, School of Nursing Oregon Health and Science University Portland, Oregon

Shirley May Harmon Hanson, RN, PhD, PMHNP/ARNP, FAAN, CFLE, LMFT Professor Emeritus, School of Nursing Oregon Health and Science University Portland, Oregon Adjunct Faculty, College of Nursing Washington State University Spokane, Washington

Family Health Care

Nursing Theory, Practice, and Research

fifth edition

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F. A. Davis Company 1915 Arch Street Philadelphia, PA 19103 www.fadavis.com

Copyright © 2015 by F. A. Davis Company

Copyright © 2015 by F. A. Davis Company. All rights reserved. This book is protected by copyright. No part of it may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without written permission from the publisher.

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Library of Congress Cataloging-in-Publication Data

Family health care nursing : theory, practice, and research / [edited by] Joanna Rowe Kaakinen, Deborah Padgett Coehlo, Rose Steele, Aaron Tabacco, Shirley May Harmon Hanson. — 5th edition.

p. ; cm. Includes bibliographical references and index. ISBN 978-0-8036-3921-8 I. Kaakinen, Joanna Rowe, 1951- editor. II. Coehlo, Deborah Padgett, editor. III. Steele, Rose, editor. IV. Tabacco, Aaron, editor. V. Hanson, Shirley M. H., 1938- editor. [DNLM: 1. Family Nursing. 2. Family. WY 159.5] RT120.F34 610.73—dc23

2014015448

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v

d e d i c a t i o n

VIVIAN ROSE GEDALY-DUFF, RN, DNS

Family nursing lost an exemplary family nurse and nursing scholar in September 2012: Vivian Rose Gedaly-Duff, our esteemed colleague and friend. As one of the editors of Family Health Care Nursing: Theory, Practice, and Research for the third and fourth editions, Vivian worked tirelessly to elevate our collective thoughts and work. Even as Vivian courageously battled breast cancer, she always asked about this edition of this textbook, offering her wisdom and insight to us. Our work in family nursing, and family nursing itself, is infinitely better because of Vivian.

We dedicate this fifth edition of Family Health Care Nursing: Theory, Practice, and Research to Vivian Rose Gedaly-Duff. Vivian, we miss you and think of you often.

—Editorial Team JOANNA, DEBORAH, ROSE, AARON, AND SHIRLEY

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vii

f o r e w o r d

Iam proud to have been the founder of FamilyHealth Care Nursing: Theory, Practice, and Re-search with the first edition published in 1996. I am honored to be asked to write this particular foreword, as this fifth edition of this textbook at- tests and gives credence to the ongoing evolution and development in the field of family nursing. This edition also marks the end of my long nursing, academic, and writing career. It is time to retire and step aside for the younger generation of family nurses to take over. It is exciting to think about what family nursing will look like in the future.

Family Health Care Nursing: Theory, Practice, and Research (I–V) is an ever changing and comprehen- sive textbook originally developed to reflect and promote the art and science of family nursing. This all-inclusive far-reaching compendium of integrat- ing theory, practice, and research continues in this fifth edition of this textbook.

All editions of this distinctive textbook were published by F. A. Davis. I am grateful for their faith, trust, and support in carrying the legacy of family nursing forward. This book originated when I was teaching family nursing at Oregon Health and Science University (OHSU) School of Nursing in Portland, Oregon. At that time there was no comprehensive or authoritative textbook on the nursing care of families that matched our program of study. This was the impetus I needed to write and edit the first edition of Family Health Care Nursing: Theory, Practice, and Research (Hanson and Boyd, 1996). The first edition met a need of nurs- ing educators in many other nursing schools around the world, so F. A. Davis invited me to re- vise, update, and publish the second edition, which came out in 2001. For the third edition, I asked two additional scholars to join me in writing and editing this edition: the late Dr. Vivian Rose Gedaly-Duff from OHSU (see Dedication) and Dr. Joanna Rowe Kaakinen, then from the University of Portland and now from Linfield College Portland

campus. A separate Instructors’ Manual, a new feature of the third edition, was developed by Dr. Deborah Padgett Coehlo when she was on faculty at Oregon State University (Bend, OR). This wonderful infu- sion of nursing colleagues and scholars elevated this textbook to a whole other level.

After my retirement from active full-time teaching and professional practice, the capable Dr. Joanna Rowe Kaakinen assumed the leadership for the fourth edition (2010). Along with Drs. Vivian Gedaly-Duff, Deborah Padgett Coehlo, and myself, we produced the fourth edition of this cutting- edge family nursing textbook that included some Canadian-specific family content. For the fourth edi- tion Dr. Deborah Padgett Coehlo wrote the first on- line teachers’ manual that accompanied this edition; two other online chapters were added to this fourth edition: research in families/family nursing and international family nursing. Dr. Joanna Rowe Kaakinen is the lead editor of this fifth edition. In thinking about the sixth edition and the future of the text, a younger family nursing scholar Aaron Tabacco (PhC) was added to the editorial team. Dr. Rose Steele, our Canadian colleague from Toronto, joined our writing team. Dr. Deborah Coehlo continues as editor and now brings the perspective of family nursing from her pediatric practice as a PNP in Bend, Oregon. My last contri- bution to this book is as editor on this fifth edition. This edition has taken on a much more international flair, especially for North America, as Canadian au- thors were added to many of the writing teams.

The first three editions of this textbook received the following awards: the American Journal of Nursing Book of the Year Award and the Nursing Outlook Brandon Selected Nursing Books Award. Every new edition has been well received around the world and every edition has brought forth new converts to family nursing. Previous editions of the text were translated or published in Japan, Portugal, India, Pakistan, Bangladesh, Burma, Bhutan, and

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Nepal. I anticipate even more international interest for this fifth edition as the message of family nurs- ing continues to spread across the globe. It is also interesting to note that online sales of the book come from many countries.

Contributors to this edition were selected from distinguished practitioners, researchers, theorists, scholars, and teachers from nursing and family so- cial scientists across the United States and Canada. Like any good up-to-date textbook, some subject matter stayed foundational and other subject mat- ter changed based on current evidence. As family nursing evolved, different authors and editors were added to the writing team. This textbook is a mas- sive undertaking involving 30 committed nurses and family scholars, not to mention the staff of F. A. Davis. The five editors of this fifth edition are grateful for this national and international dedica- tion to family nursing. Together we all continue to increase nursing knowledge pertaining to the nurs- ing care of families across the globe.

This fifth edition builds on the previous edi- tions. The primary shift in the direction of this edi- tion is to make family nursing practice meaningful and realistic for nursing students. The first unit of the book addresses critical foundational knowledge pertaining to families and nursing. The second unit concentrates on theory-guided, evidence-based practice of the nursing care of families across the life span and in a variety of specialties. In addition to the large increase of Canadian contributors, sub- stantial updates took place in all chapters. A new chapter, Trauma and Family Nursing, was added. Other new or updated features of this edition in- clude the following:

■ A strong emphasis on evidence-based prac- tice in each chapter.

■ Five selected family nursing theories inter- woven throughout the book.

■ Family case studies that demonstrate the practice of family nursing.

■ Content that addresses family nursing in both Canada and the United States (North America).

Family nursing, as an art and science, has trans- formed in response to paradigm shifts in the pro- fession and in society over time. As a nursing student in the United States during the 1950s, the focus of care was on individuals and centered in hospitals. As time passed and the profession ma- tured, nursing education and practice expanded and

shifted to more family-centered care and community- based nursing. The codified version of family nursing really emerged and peaked during the 1980s and 1990s in the United States and Canada, where the movement was headquartered. Even though this initial impetus for family nursing came from North America, the concept spread quickly around the world. Asian countries, in par- ticular, have embraced family nursing, and though they initially translated books coming from the United States or Canada, they have matured to creating their own books and theories for family nursing. The Scandinavian countries have expanded their own scholarship and tailored family nursing to their own unique countries and populations. Today, it could be said that family nursing is with- out borders and that no one country owns family nursing.

The International Family Nursing Association (IFNA) was established in 2009 for the purpose of advancing family nursing and creating a global community of nurses who practice with families. The 11th International Family Nursing Conference (and the first official conference of IFNA) took place June 19–22, 2013, in Minneapolis, Minnesota, USA. This new professional body (IFNA) is assum- ing the leadership for keeping family nursing at the forefront of theory development, practice, research, education, and social policy across the globe.

Family nursing has become more than just a “buzzword” but rather an actual reality. Family nursing is being taught in many educational insti- tutions, practiced in multiple health care settings, and globally actualized by many nurses. Nursing care to individuals, regardless of place, occurs within the context of families and communities— all of which can be called “family nursing.” Most everyone in the nursing profession agrees that a profound, reciprocal relationship exists between families, health, and nursing.

This book and current edition recognizes that nursing as a profession has a close alignment with families. Nurses share many of the responsibilities with families for the care and protection of their family members. Nurses have an obligation to help families promote and advance the care and growth of both individual family members and families as a unit. This textbook provides nursing students the knowledge base and the processes to become effec- tive in their nursing care with families. Additionally, families benefit when already practicing registered

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nurses use this knowledge to reorganize their nurs- ing care to be more family centered and develop working partnerships with families to strengthen family systems. Family Health Care Nursing: Theory, Practice, and Research was written by nurses for nurses who practice nursing care of families. Students will learn how to tailor their assessment and interventions with families in health and ill- ness, in physical as well as mental health, across the life span, and in all the settings in which nurses and families interface. I firmly believe that this fifth edition of this textbook is at the cutting

edge of this practice challenge for the next decade, and will help to marshal the nursing profession toward improving nursing care of families.

—SHIRLEY MAY HARMON HANSON, RN, PhD, PMHNP/ARNP, FAAN, CFLE, LMFT Professor Emeritus, School of Nursing Oregon Health and Science University Portland, Oregon Adjunct Faculty, College of Nursing Washington State University Spokane, WA

Foreword ix

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xi

p r e f a c e

Ask anyone about a time they were affected by something that happened to one of their family members, and you will be overwhelmed with the intensity of the emotions and the exhaustive details. Every individual is influenced significantly by their families and the structure, function, and processes within their families. Even individuals who do not interact with their families have been shaped by their families. The importance and connection be- tween individuals and their families have been stud- ied expansively in a variety of disciplines, including nursing.

As such, the importance of working in partner- ships with families in the health care system is evi- dent. Yet many health care providers view dealing with patients’ families as an extra burden that is too demanding. Some nurses are baffled when a family acts or reacts in certain ways that are foreign to their own professional and personal family experiences. Some nurses avoid the tensions and anxiety that exist in families during a crisis situation. But it is in just such situations that families most need nurses’ understanding, knowledge, and guidance. The pur- pose of this book is to provide nursing students, as well as practicing nurses, with the understanding, knowledge, and guidance to practice family nursing. This fifth edition of the textbook focuses on theory- guided, evidence-based practice of the nursing care of families throughout the family life cycle and across a variety of clinical specialties.

Use of the Book Family Health Care Nursing: Theory, Practice, and Research, fifth edition, is organized so that it can be used on its own and in its entirety to structure a course in family nursing. An alternative approach for the use of this text is for students to purchase

the book at the beginning of their program of study so that specific chapters can be assigned for specialty courses throughout the curriculum. The fifth edition complements a concept-based curriculum design. For example, Chapter 16, Family Mental Health Nursing, could be assigned when students take their mental health nursing course, and Chapter 13, Family Child Health Nursing, could be studied during a pediatric course or in conjunction with life-span–concept curriculum for chronic illness and acute care courses. Thus, this textbook could be integrated throughout the undergraduate or graduate nursing curriculum.

Canadian Content Moreover, this fifth edition builds on successes of the past editions and responds to recommenda- tions from readers/users of past editions. Because of the ever-evolving nature of families and the changing dynamics of the health care system, the editors added new chapters, consolidated chapters, and deleted some old chapters. Importantly, this fifth edition incorporates additional Canadian- specific content. Though it is true that the United States and Canada have different health care systems, so many of the stressors and challenges for families overlap. One of the editors for this fifth edition, Rose Steele, is from Toronto and helped expand our concepts about Canadian nurs- ing. Moreover, a number of chapters in the text have a combined author team of scholars from both Canada and the United States: Chapter 5, Family Social Policy and Health Disparities; Chapter 12, Family Nursing With Childbearing Families; and Chapter 17, Families and Community/Public Health Nursing. Two chapters in this edition were writ- ten by an all-Canadian team: Chapter 6, Relational

Overview of the Fifth Edition

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Nursing and Family Nursing in Canada and Chapter 10, Families in Palliative and End-of-Life Care. All of the chapters in this edition include in- formation, statistics, programs, and interventions that address the individual needs of families and fam- ily nurses from both Canada and the United States.

Additions and Deletions This edition contains one new chapter: Chapter 11, Trauma and Family Nursing. Between the advanced understanding of brain function and general physi- ology; the mind and body response to severe and/or prolonged stress; and the increase in trauma experi- enced by families through war, natural disasters, and family violence, the need to understand, prevent, treat, and monitor the effects of trauma on individ- uals and families has never been more vital. There- fore, we felt it was essential to include ways family nurses could work with these families. All chapters have been changed and updated significantly to reflect the present state of “family,” current evidence-based practice, research, and interventions. Many of the chapters now include a second family case study to illustrate further the evidence discussed throughout that specific chapter. We deleted the chapter on the future of families and family nursing because changes in health care reform, social policy, and families are occurring at such a rate that it is impossible to predict what the future will hold.

Structure of the Book Each chapter begins with the critical concepts to be addressed within that chapter. The purpose of plac- ing the critical concepts at the beginning of the chapter is to focus the reader’s thinking and learning and offer a preview and outline of what is to come. Another organizing framework for the book is pre- sented in Chapter 3, Theoretical Foundations for the Nursing of Families. This chapter covers the im- portance of using theory to guide the nursing of families and presents five theoretical perspectives, with a case study demonstrating how to apply these five theoretical approaches in practice. These five theories are threaded throughout the book and are applied in many of the chapter case studies. As stated earlier, most of the chapters include two case studies; all of the case studies contain family genograms and ecomaps.

The main body of the book is divided into three units: Unit 1: Foundations in Family Health Care

Nursing, which includes Chapters 1 to 5; Unit 2: Families Across the Health Continuum, which in- cludes Chapters 6 to 11; and Unit 3: Nursing Care of Families in Clinical Areas, which includes Chapters 12 to 17. The Family Health Care Nursing Instructors’ Guide is an online faculty guide that pro- vides assistance to faculty using/teaching family nursing or the nursing care of families in a variety of settings. Each chapter also includes a Power- Point presentation, Case Study Learning Activities, and other online assets, which can be found at www.DavisPlus.com.

UNIT 1

Foundations in Family Health Care Nursing Chapter 1: Family Health Care Nursing: An Introduction provides foundational materials es- sential to understanding families and nursing. Two nursing scholars have worked on this chapter now for three editions: Joanna Rowe Kaakinen, PhD, RN, Professor at the Linfield College School of Nursing and Shirley May Harmon Hanson, RN, PhD, PMHNP/ARNP, FAAN, CFLE, LMFT, Professor Emeritus at Oregon Health and Science University School of Nursing. The chapter lays down crucial foundational knowledge about fami- lies and family nursing.

The first half of the chapter discusses dimen- sions of family nursing and defines family, family health, and healthy families. The chapter follows with an explanation of family health care nursing and the nature of interventions in the nursing care of families, along with the four approaches to family nursing (context, client, system, and component of society). The chapter then presents the concepts or variables that influence family nursing, family nursing roles, obstacles to family nursing practice, and the history of family nurs- ing. The second half of the chapter elaborates on theoretical ideas involved with understanding family structure, family functions, and family processes.

Chapter 2: Family Demography: Continuity and Change in North American Families pro- vides nurses with a basic contextual orientation to the demographics of families and health. All three authors are experts in statistics and family demog- raphy. Three sociologists joined to update and

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write this chapter: Lynne M. Casper, PhD, Profes- sor of Sociology and Director of the South California Population Research Center, University of Southern California (USC); Sandra M. Florian, MA, PhD Candidate, who is a graduate student/ research assistant, Population Research Center at USC Department of Sociology; and Peter D. Brandon, PhD, Professor, Department of Sociology, The University at Albany (SUNY), New York. This chapter examines changes and variations in North American families in order to understand what these changes portend for family health care nurs- ing during the first half of this century. The subject matter of the chapter is structured to provide fam- ily nurses with background on changes in the North American family so that they can understand their patient populations. The chapter briefly touches on the implications of these demographic patterns on practicing family nursing.

Chapter 3: Theoretical Foundations for the Nursing of Families is co-authored by two of the editors of this textbook: Joanna Rowe Kaakinen and Shirley May Harmon Hanson. This chapter lays the theoretical groundwork needed to practice family nursing. The introduction builds a case for why nurses need to understand the interactive relation- ship among theory, practice, and research. It also makes the point that no single theory adequately de- scribes the complex relationships of family structure, function, and processes. The chapter then continues by delineating and explaining relevant theories, concepts, propositions, hypotheses, and conceptual models. Selected for this textbook, and explained in this chapter, are five theoretical/conceptual models: Family Systems Theory, Developmental and Family Life Cycle Theory, Bioecological Theory, Rowland’s Chronic Illness Framework, and the Family Assess- ment and Intervention Model. Using basic family case studies, the chapter explores how each of the five theories could be used to assess and plan interven- tions for a family. This approach enables learners to see how different interventions are derived from dif- ferent theoretical perspectives.

Chapter 4: Family Nursing Assessment and Intervention is co-authored by Joanna Rowe Kaakinen and Aaron Tabacco, BSN, RN, Doctoral Candidate, who is a Student Instructor, Under- graduate Nursing Programs at Oregon Health Sciences University, Portland, Oregon. The pur- pose of this chapter is to present a systematic approach to develop a plan of action for the fam- ily, with the family, to address its most pressing

needs. These authors built on the traditional nurs- ing process model to create a dynamic systematic family nursing assessment approach. Assessment strategies include selecting assessment instru- ments, determining the need for interpreters, as- sessing for health literacy, and learning how to diagram family genograms and ecomaps. The chapter also explores ways to involve families in shared decision making, and explores analysis, a critical step in the family nursing process that helps focus the nurse and the family on identifi- cation of the family’s primary concern(s). The chapter uses a family case study as an exemplar to demonstrate the family nursing assessment and intervention.

Chapter 5: Family Social Policy and Health Disparities exposes nurses to social issues that affect the health of families and strongly challenge nurses to become more involved in the political as- pects of health policy. This chapter is co-authored by two experienced nurses in the social policy arena and a sociology professor: Isolde Daiski, RN, BScN, EdD, Associate Professor, School of Nurs- ing, from York University, Toronto, Ontario, Canada; Casey R. Shillam, PhD, RN-BC, Director of the BSN program at Western Washington State University, Bellingham, Washington; Lynne M. Casper, PhD, Professor Sociology at the Univer- sity of Southern California; and Sandra Florian, MA, a graduate student at the University of South- ern California. These authors discuss the practice of family nursing within the social and political structure of society. They encourage the readers to understand their own biases and how these contribute to health disparities. In this chapter, stu- dents learn about the complex components that contribute to health disparities. Nurses are called to become politically active, advocate for vulnera- ble families, and assist in the development of creative alternatives to social policies that limit ac- cess to quality care and resources. These authors present the difficulties families face in the current political climate in both the United States and Canada, as the legal definition of family is being challenged and family life evolves. The chapter touches on social policies, or lack of them, specifi- cally policies that affect education, socioeconomic status, and health insurance. The chapter also explores determinants of health disparities, which include infant mortality rates, obesity, asthma, HIV/AIDS, aging, women’s issues, and health literacy.

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UNIT 2

Families Across the Health Continuum Chapter 6: Relational Nursing and Family Nursing in Canada is co-authored by Canadian nursing scholars Colleen Varcoe, PhD, RN, Asso- ciate Professor and Associate Research Director at the University of British Columbia, School of Nursing in Vancouver, British Columbia, Canada; and Gweneth Hartrick Doane, PhD, RN, Profes- sor, School of Nursing, University of Victoria, British Columbia, Canada. Relational inquiry fam- ily nursing practice is oriented toward enhancing the capacity and power of people/families to live a meaningful life (meaningful from their own per- spective). Understanding and working directly with context provides a key resource and strategy for responsive, health-promoting family nursing prac- tice. Grounded in a relational inquiry approach, this chapter focuses specifically on the significance of context in family nursing practice in Canada. The chapter highlights the interface of sociopolitical, historical, geographical, and economic elements in shaping the health and illness experiences of fami- lies in Canada and the implications for family nurs- ing practice. The chapter covers some of the key characteristics of Canadian society, and how those characteristics shape health, families, health care, and family nursing. Informed by a relational in- quiry approach to family nursing, the chapter turns to the ways nurses might practice more respon- sively and effectively based on this understanding.

Chapter 7: Genomics and Family Nursing Across the Life Span is authored by a nursing ex- pert in nursing genomics, Dale Halsey Lea, MPH, RN, CGC, FAAN, Consultant, Public Health Genomics and Adjunct Lecturer for University of Maine School of Nursing. The ability to apply an understanding of genetics in the care of families is a priority for nurses and for all health care providers. As a result of genomic research and the rapidly changing body of knowledge regarding ge- netic influences on health and illness, more empha- sis has been placed on involving all health care providers in this field, including family nursing. This chapter describes nursing responsibilities for families of persons who have, or are at risk for having, genetic conditions. These responsibilities are described for families before conception, with neonates, teens in families, and families with

members in the middle to elder years. The goal of the chapter is to describe the relevance of genetic information within families when there is a ques- tion about genetic aspects of health or disease for members of the family. The chapter begins with a brief introduction to genomics and genetics. The chapter then explains how families react to finding out they are at risk for genetic conditions, and decide how and with whom to disclose genetic in- formation, and the critical aspect of confidentiality. The chapter outlines the components of conduct- ing a genetic assessment and history, and offers interventions that include education and resources. Several specific case examples and a detailed case study illustrate nurses working with families who have a genetic condition.

Chapter 8: Family Health Promotion is writ- ten by Yeoun Soo Kim-Godwin, PhD, MPH, RN, Professor of Nursing; and Perri J. Bomar, PhD, RN, Professor Emeritus, who are both from the School of Nursing at the University of North Carolina, Wilmington. Fostering the health of the family as a unit and encouraging families to value and incorporate health promotion into their lifestyles are essential components of family nurs- ing practice. The purpose of this chapter is to in- troduce the concepts of family health and family health promotion. The chapter presents models to illuminate these concepts, including the Model of Family Health, Family Health Model, McMaster Model of Family Functioning, Developmental Model of Health and Nursing, Family Health Pro- motion Model, and Model of the Health-Promoting Family. The chapter also examines internal and external factors through a lens of the bioecological systems theory that influence family health promo- tion. It covers family nursing intervention strate- gies for health promotion, and presents two family case studies demonstrating how different theoreti- cal approaches can be used for assessing and inter- vening in the family for health promotion. The chapter also discusses the role of nurses and inter- vention strategies in maintaining and regaining the highest level of family health. Specific interventions presented include family empowerment, anticipa- tory guidance, offering information, and encour- aging family rituals, routines, and time together.

Chapter 9: Families Living With Chronic Illness is co-authored by Joanna Rowe Kaakinen and Sharon A. Denham, DSN, RN, Professor, Houston J. and Florence A. Doswell Endowed

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Chair in Nursing for Teaching Excellence, Texas Woman’s University, Dallas, Texas. The purpose and focus of this chapter is to describe ways for nurses to think about the impact of chronic illness on families and to consider strategies for helping families manage chronic illness. The first part of this chapter briefly outlines the global statistics of chronic illness, the economic burden of chronic diseases, and three theoretical perspectives for working with families liv- ing with chronic illness. The majority of the chapter describes how families and individuals are challenged to live a quality life in the presence of chronic illness and how nurses assist these families. Specific atten- tion is drawn to families with children who have a chronic illness and families with an adult member living with a chronic illness. The chapter addresses adolescents who live with a chronic illness as they transition from pediatric to adult medical care, sib- lings of children with a chronic illness and their spe- cific needs, and the needs of young caregivers who provide care for a parent who has a chronic illness. The chapter presents two case studies: one a family who has an adolescent with diabetes and one a family helping its elderly parent and grandparent manage living with Parkinson’s disease.

Chapter 10: Families in Palliative and End-of- Life Care is written by Rose Steele, PhD, RN, Pro- fessor, York University School of Nursing, Toronto, Ontario, Canada; Carole A. Robinson, PhD, RN, Associate Professor, University of British Columbia, Okanagan School of Nursing, British Columbia, Canada; and Kimberley A. Widger, PhD, RN, As- sistant Professor, Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Ontario, Canada. This chapter details the key components to consider in providing palliative and end-of-life care, as well as families’ most important concerns and needs when a family member experiences a life-threatening ill- ness or is dying. It also presents some concrete strategies to assist nurses in providing optimal pal- liative and end-of-life care to all family members. More specifically, the chapter begins with a brief definition of palliative and end-of-life care, in- cluding its focus on improving quality of life for patients and their families. The chapter then out- lines principles of palliative care and ways to apply these principles across all settings and regard- less of whether death results from chronic illness or a sudden or traumatic event. Two evidence-based, palliative care and end-of-life case studies con- clude the chapter.

Chapter 11: Trauma and Family Nursing is written by Deborah Padgett Coehlo, PhD, C-PNP, PMHS, CFLE, Developmental and Behavioral Spe- cialist, Juniper Ridge Clinic, Bend, Oregon, and ad- junct faculty at Oregon State University. Dr. Coehlo has been on the editorial team for two editions of this text. Using theory-guided practice, this chapter helps nurses develop knowledge about trauma and family nurses’ key role in the field of trauma. It em- phasizes the importance of prevention, early treat- ment, encouraging family resilience, and helping the family to make meaning out of negative events. This chapter also stresses an understanding of secondary trauma, or the negative effects of witnessing trauma of others. This discussion is particularly salient for family nurses, because they are some of the most likely professionals to encounter traumatized victims in their everyday practice. Two case studies explicate family nursing when working with families who are experiencing the effects of traumatic life events.

UNIT 3

Nursing Care of Families in Clinical Areas Chapter 12: Family Nursing With Childbearing Families is written by Linda Veltri, PhD, RN, Clin- ical Assistant Professor, Oregon Health Science University, School of Nursing, Ashland, Oregon, Campus; Karline Wilson-Mitchell, RM, CNM, RN, MSN, Assistant Professor, Midwifery Education Program, Ryerson University, Ontario, Canada; and Kathleen Bell, MSN, CNM, AHN-BC, Clinical Associate, School of Nursing, Linfield College, Portland, Oregon. The focus of childbearing family nurses is family relationships and the health of all family members. Therefore, nurses involved with childbearing families use family concepts and theo- ries as part of developing the plan of nursing care. A review of literature provides current evidence about the processes families experience when deciding on and adapting to childbearing, including theory and clinical application of nursing care for families plan- ning pregnancy, experiencing pregnancy, adopting and fostering children, struggling with infertility, and coping with illness during the early postpartum period. This chapter starts by presenting theoretical perspectives that guide nursing practice with child- bearing families. It continues with an exploration of

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family nursing with childbearing families before conception through the postpartum period. The chapter covers specific issues childbearing families may experience, including postpartum depression, attachment concerns, and postpartum illness. Nurs- ing interventions are integrated throughout this chapter to demonstrate how family nurses can help childbearing families prevent complications, in- crease coping strategies, and adapt to their expanded family structure, development, and function. The chapter concludes with two case studies that explore family adaptations to stressors and changing roles related to childbearing.

Chapter 13: Family Child Health Nursing is written by Deborah Padgett Coehlo. A major task of families is to nurture children to become healthy, responsible, and creative adults who can develop meaningful relationships across the life span. Families experience the stress of normative transitions with the addition of each child and situational transitions when children are ill. Knowl- edge of the family life cycle, child development, and illness trajectory provides a foundation for offering anticipatory guidance and coaching at stressful times. Family life influences the promo- tion of health and the experience of illness in chil- dren, and is influenced by children’s health and illness. This chapter provides a brief history of family-centered care of children and then presents foundational concepts that will guide nursing prac- tice with families with children. The chapter goes on to describe nursing care of well children and families with an emphasis on health promotion, nursing care of children and families in acute care settings, nursing care of children with chronic ill- ness and their families, and nursing care of children and their families during end of life. Case studies illustrate the application of family-centered care across settings.

Chapter 14: Family Nursing in Acute Care Adult Settings is written by Vivian Tong, PhD, RN, and Joanna Rowe Kaakinen, PhD, RN, both profes- sors of nursing at Linfield College-Good Samaritan School of Nursing, Portland, Oregon. Hospitaliza- tion for an acute illness, injury, or exacerbation of a chronic illness is stressful for patients and their fam- ilies. The ill adult enters the hospital usually in a physiological crisis, and the family most often accom- panies the ill or injured family members into the hos- pital; both the patient and the family are usually in an emotional crisis. Families with members who are

acutely or critically ill are seen in adult medical- surgical units, intensive care or cardiac care units, or emergency departments. This chapter covers the major stressors that families experience during hos- pitalization of adult family members, the transfer of patients from one unit to another, visiting policies, family waiting rooms, home discharge, family pres- ence during cardiopulmonary resuscitation, with- drawal or withholding of life-sustaining therapies, end-of-life family care in the hospital, and organ do- nation. The content emphasizes family needs during these critical events. This chapter also presents a fam- ily case study in a medical-surgical setting that demonstrates how the Family Assessment and Inter- vention Model and the FS3I can be used as the frame- work to assess and intervene with a particular family.

Chapter 15: Family Health in Mid and Later Life is co-authored by Diana L. White, PhD, Senior Research Associate in Human Development and Family Studies, Institute of Aging at Portland State University, Portland, Oregon, and Jeannette O’Brien, PhD, RN, Assistant Professor at Linfield College–Good Samaritan School of Nursing, Port- land, Oregon. The chapter employs the life course perspective, family systems models, and develop- mental theories as the guiding organizational struc- ture. The chapter presents evidence-based practice on working with adults in mid and later life, includ- ing a review of living choices for older adults with chronic illness, and the importance of peer rela- tionships and intergenerational relationships to quality of life. This chapter includes extensive information about family caregiving for and by older adults, including spouses, adult children, and grandparents. Two case studies conclude the chap- ter. One family case study illustrates the integrated generational challenges facing older adults today. The second case study addresses care of an elderly family member who never married and has no chil- dren. This case presents options for caregiving and the complexity of living healthy.

Chapter 16: Family Mental Health Nursing has been completely revised for this edition. It is written by Laura Rodgers, PhD, RN, PMHNP, Professor of Nursing at Linfield College–Good Samaritan School of Nursing, Portland, Oregon. Dr. Rodgers brings to her writing both her schol- arly perspective and clinical practice as a psychiatric nurse practitioner in private practice. The chapter begins with a brief demographic overview of the pervasiveness of mental health conditions (MHCs)

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in both Canada and the United States. The remain- der of the chapter focuses on the impact a specific MHC can have on the individual with the MHC, individual family members, and the family as a unit. Although the chapter does not go into specific di- agnostic criteria for various conditions, it does offer nursing interventions to assist families. One case study explores the impact and treatment of sub- stance abuse. The second presents how a family nurse can work with a family to improve the health of all family members when one family member lives with paranoid schizophrenia.

Chapter 17: Families and Community/Public Health Nursing is co-authored by a North Amer- ican writing team: Linda L. Eddy, PhD, RN, CPNP, Associate Professor, Washington State University Intercollegiate College of Nursing, Vancouver, Washington; Annette Bailey, PhD, RN, Assistant Professor, Daphne Cockwell School of Nursing, Ryerson University, Toronto, Ontario, Canada; and Dawn Doutrich, PhD, RN, CNS,

Associate Professor, Washington State University Intercollegiate College of Nursing, Vancouver, Washington. Healthy communities are comprised of healthy families. Community/public health nurses understand the effects that communities can have on individuals and families, and recognize that a community’s health is reflected in the health ex- periences of its members and their families. This chapter offers a description of community health nursing promoting the health of families in com- munities. It begins with a definition of community health nursing, and follows with a discussion of concepts and principles that guide the work of these nurses, the roles they enact in working with families and communities, and the various settings where they work. This discussion is organized around a visual representation of community health nursing. The chapter ends with discussion of cur- rent trends in community/public health nursing and a family case study that demonstrates working with families in the community.

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xix

c o n t r i b u t o r s

ANNETTE BAILEY, PhD, RN Assistant Professor, Daphne Cockwell School of

Nursing Ryerson University Toronto, Ontario, Canada

KATHLEEN BELL, RN, MSN, CNM, AHN-BC

Clinical Associate, School of Nursing Linfield College Portland, Oregon

PERRI J. BOMAR, PhD, RN Professor Emeritus, School of Nursing University of North Carolina at Wilmington Wilmington, North Carolina

PETER D. BRANDON, PhD Professor, Department of Sciology The University at Albany - SUNY Albany, New York

LYNNE, M. CASPER, PhD Professor of Sociology and Director, Southern

California Population Research Center University of Southern California Los Angeles, California

DEBORAH PADGETT COEHLO, PhD, C-PNP, PMHS, CFLE

Developmental and Behavioral Specialist Juniper Ridge Clinic Bend, Oregon Adjunct Professor Oregon State University Bend, Oregon

ISOLDE DAISKI, RN, BScN, EdD Associate Professor, School of Nursing York University Toronto, Ontario, Canada

SHARON A. DENHAM, DSN, RN Professor and Houston J. and Florence A. Doswell

Endowed Chair in Nursing for Teaching Excellence, College of Nursing

Texas Woman’s University, Dallas Dallas, Texas

GWENETH HARTRICK DOANE, PhD, RN Professor, School of Nursing University of Victoria Victoria, British Columbia, Canada

DAWN DOUTRICH, PhD, RN, CNS Associate Professor, Intercollegiate College of

Nursing Washington State University Vancouver, Washington

LINDA L. EDDY, PhD, RN, CPNP Associate Professor, Intercollegiate College of Nursing Washington State University Vancouver, Washington

SANDRA M. FLORIAN, MA PhD Candidate, Department of Sociology University of Southern California Los Angeles, California

DALE HALSEY LEA, MPH, RN, CGC, FAAN Adjunct Lecturer, School of Nursing University of Maine Cumberland Foreside, Maine

SHIRLEY MAY HARMON HANSON, RN, PhD, PMHNP/ARNP, FAAN, CFLE, LMFT

Professor Emeritus, School of Nursing Oregon Health and Science University Portland, Oregon Adjunct Faculty, College of Nursing Washington State University Spokane, Washington

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JOANNA ROWE KAAKINEN, PhD, RN Professor, School of Nursing Linfield College Portland, Oregon

YEOUN SOO KIM-GODWIN, PhD, MPH, RN

Professor, School of Nursing University of North Carolina, Wilmington Wilmington, North Carolina

JEANNETTE O’BRIEN, PhD, RN Assistant Professor, School of Nursing Linfield College Portland, Oregon

CAROLE A. ROBINSON, PhD, RN Associate Professor, School of Nursing University of British Columbia, Okanagan Kelowna, British Columbia, Canada

LAURA RODGERS, PhD, PMHNP Professor, School of Nursing Linfield College Portland, Oregon

CASEY R. SHILLAM, PhD, RN-BC Director, School of Nursing Western Washington University Bellingham, Washington

ROSE STEELE, PhD, RN Professor, School of Nursing, Faculty of Health York University Toronto, Ontario, Canada

AARON TABACCO, BSN, RN Doctoral Candidate, School of Nursing Oregon Health and Science University Portland, Oregon

VIVIAN TONG, PhD, RN Professor, School of Nursing Linfield College Portland, Oregon

COLLEEN VARCOE, PhD, RN Associate Professor, School of Nursing University of British Columbia Vancouver, British Columbia, Canada

LINDA VELTRI, PhD, RN Clinical Assistant Professor, School of Nursing Oregon Health Science University, Ashland Ashland, Oregon

DIANA L. WHITE, PhD Senior Research Associate, Institute on Aging Portland State University Portland, Oregon

KIMBERLEY A. WIDGER, PhD, RN Assistant Professor, Lawrence S. Bloomberg School of

Nursing University of Toronto Toronto, Ontario, Canada

KARLINE WILSON-MITCHELL, RM, CNM, RN, MSN

Assistant Professor, Midwifery Education Program Ryerson University Toronto, Ontario, Canada

xx Contributors

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r e v i e w e r s

ELLEN J. ARGUST, MS, RN Lecturer State University of New York New Paltz, New York

AMANDA J. BARTON, DNP, FNP, RN Assistant Professor Hope College Holland, Michigan

LAURA J. BLANK, RN, MSN, CNE Assistant Clinical Professor Northern Arizona University Flagstaff, Arizona

BARBARA S. BROOME, PhD, RN Associate Dean and Chair University of South Alabama Mobile, Alabama

SHARON L. CARLSON, PhD, RN Professor Otterbein College Westerville, Ohio

BARBARA CHEYNEY, BSN, MS, RN-BC Adjunct Faculty Seattle Pacific University Seattle, Washington

MICHELE D’ARCY-EVANS, PhD, CNM Professor Lewis-Clark State College Lewiston, Idaho

MARGARET C. DELANEY, MS, CPNP, RN Faculty Instructor Benedictine University Lisle, Illinois

SANDRA K. EGGENBERGER, PhD, RN Professor Minnesota State University Mankato Mankato, Minnesota

ANNELIA EPIE, RN, MN(c) Public Health Nurse City of Toronto Public Health Toronto, Ontario, Canada

BRIAN FONNESBECK, RN Associate Professor Lewis Clark State College Lewiston, Idaho

MARY ANN GLENDON, PhD, MSN, RN Associate Professor Southern Connecticut State University New Haven, Connecticut

RACHEL E. GRANT, RN, MN Research Associate University of Toronto Toronto, Ontario, Canada

SHEILA GROSSMAN, PhD, FNP-BC Professor and FNP Specialty Track Director Fairfield University Fairfield, Connecticut

AAFREEN HASSAN, RN Registered Nurse Scarborough Hospital Toronto, Ontario, Canada

ANNA JAJIC, MN-NP, MSc, RPN, BSsN Faculty and Nurse Practitioner Douglas College New West Minster, British Columbia, Canada

MOLLY JOHNSON, MSN, CPNP, RN Nursing Instructor Ohio University Ironton, Ohio

KATHY KOLLOWA, MSN, RN Nurse Educator Platt College Aurora, Colorado

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KEN KUSTIAK, RN, RPN, BScN, MHS(c) Nursing Instructor Grant MacEwan College Ponoka, Alberta, Canada

MAUREEN LEEN, PhD, RN, CNE Professor Madonna University Livonia, Michigan

KAREN ELIZABETH LEIF, BA, RN, MA Nurse Educator Globe University, Minnesota School of Business Richfield, Minnesota

BARBARA MCCLASKEY, PhD, MN, RNC, ARNP

Professor Pittsburg State University Pittsburg, Kansas

VICKI A. MOSS, DNSc, RN Associate Professor University of Wisconsin, Oshkosh Oshkosh, Wisconsin

VERNA C. PANGMAN, MEd, MN, RN Senior Instructor University of Manitoba Winnipeg, Manitoba, Canada

CINDY PARSONS, DNP, PMHNP-BC, FAANP

Assistant Professor University of Tampa Tampa, Florida

SUSAN PERKINS, MSN, RN Lead Faculty and Instructor Washington State University Spokane, Washington

CINDY PETERNELJ-TAYLOR, RN, BScN, MSc, PhD(c)

Professor University of Saskatchewan Saskatoon, Saskatchewan, Canada

THELMA PHILLIPS, MSN, RN, NRP Instructor University of Detroit, Mercy Detroit, Michigan

TREVA V. REED, BScN, MSN, PhD Professor Canadore College/Nipissing University North Bay, Ontario, Canada

NANCY ROSS, PhD, ARNP Professor University of Tampa Tampa, Florida

CARMEN A. STOKES, PhD(c), RN, MSN, FNP-BC, CNE

Assistant Professor University of Detroit, Mercy Detroit, Michigan

JILL STRAWN, EdD, APRN Associate Professor Southern Connecticut State University New Haven, Connecticut

SARA STURGIS, MSN, CRNP Manager, Pediatric Clinical Research Hershey Medical Center Hershey, Pennsylvania

BARBARA THOMPSON, RN, BScN, MScN Professor Sault College Sault Ste. Marie, Ontario, Canada

SHARON E. THOMPSON, MSN, RN Assistant Clinical Professor Northern Arizona University Flagstaff, Arizona

MARYANN TROIANO, MSN, RN, APN Assistant Professor and Family Nurse Practitioner Monmouth University West Long Branch, New Jersey

LOIS TSCHETTER, EdD, RN, IBCLC Associate Professor South Dakota State University Brookings, South Dakota

WENDY M. WHEELER, RN, MN Instructor Red Deer College Red Deer, Alberta, Canada

MARIA WHEELOCK, MSN, NP Clinical Assistant Professor and Nurse Practitioner State University of New York, Upstate Medical

University Syracuse, New York

xxii Reviewers

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t a b l e o f c o n t e n t s

U N I T 1 Foundations in Family Health Care Nursing 1 chapter 1 Family Health Care Nursing 3

An Introduction Joanna Rowe Kaakinen, PhD, RN Shirley May Harmon Hanson, RN, PhD, PMHNP/ARNP, FAAN, CFLE, LMFT

chapter 2 Family Demography 33 Continuity and Change in North American Families Lynne M. Casper, PhD Sandra M. Florian, MA, PhD Candidate Peter D. Brandon, PhD

chapter 3 Theoretical Foundations for the Nursing of Families 67 Joanna Rowe Kaakinen, PhD, RN Shirley May Harmon Hanson, RN, PhD, PMHNP/ARNP, FAAN, CFLE, LMFT

chapter 4 Family Nursing Assessment and Intervention 105 Joanna Rowe Kaakinen, PhD, RN Aaron Tabacco, BSN, RN, Doctoral Candidate

chapter 5 Family Social Policy and Health Disparities 137 Isolde Daiski, RN, BScN, EdD Casey R. Shillam, PhD, RN-BC Lynne M. Casper, PhD Sandra M. Florian, MA, PhD Candidate

U N I T 2 Families Across the Health Continuum 165 chapter 6 Relational Nursing and Family Nursing in Canada 167

Colleen Varcoe, PhD, RN Gweneth Hartrick Doane, PhD, RN

chapter 7 Genomics and Family Nursing Across the Life Span 187 Dale Halsey Lea, MPH, RN, CGC, FAAN

chapter 8 Family Health Promotion 205 Yeoun Soo Kim- Godwin, PhD, MPH, RN Perri J. Bomar, PhD, RN

chapter 9 Families Living With Chronic Illness 237 Joanna Rowe Kaakinen, PhD, RN Sharon A. Denham, DSN, RN

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chapter 10 Families in Palliative and End-of-Life Care 277 Rose Steele, PhD, RN Carole A. Robinson, PhD, RN Kimberley A. Widger, PhD, RN

chapter 11 Trauma and Family Nursing 321 Deborah Padgett Coehlo, PhD, C-PNP, PMHS, CFLE

U N I T 3 Nursing Care of Families in Clinical Areas 351 chapter 12 Family Nursing With Childbearing Families 353

Linda Veltri, PhD, RN Karline Wilson-Mitchell, RM, CNM, RN, MSN Kathleen Bell, RN, MSN, CNM, AHN-BC

chapter 13 Family Child Health Nursing 387 Deborah Padgett Coehlo, PhD, C-PNP, PMHS, CFLE

chapter 14 Family Nursing in Acute Care Adult Settings 433 Vivian Tong, PhD, RN Joanna Rowe Kaakinen, PhD, RN

chapter 15 Family Health in Mid and Later Life 477 Diana L. White, PhD Jeannette O’Brien, PhD, RN

chapter 16 Family Mental Health Nursing 521 Laura Rodgers, PhD, PMHNP

chapter 17 Families and Community/Public Health Nursing 559 Linda L. Eddy, PhD, RN, CPNP Annette Bailey, PhD, RN Dawn Doutrich, PhD, RN, CNS

APPENDICES appendix A Family Systems Stressor-Strength Inventory (FS3I) 583 appendix B The Friedman Family Assessment Model (Short Form) 599

INDEX 603

xxiv Table of Contents

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U N I T

1 Foundations in Family Health Care Nursing

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3

Family Health Care Nursing An Introduction

c h a p t e r 1

Joanna Rowe Kaakinen, PhD, RN

Shirley May Harmon Hanson, PhD, PMHNP/ARNP, FAAN, CFLE, LMFT

C r i t i c a l C o n c e p t s

■ Family health care nursing is an art and a science that has evolved as a way of thinking about and working with families.

■ Family nursing is a scientific discipline based in theory.

■ Health and illness are family events.

■ The term family is defined in many ways, but the most salient definition is, The family is who the members say it is.

■ An individual’s health (on the wellness-to-illness continuum) affects the entire family’s functioning, and in turn, the family’s ability to function affects each individual member’s health.

■ Family health care nursing knowledge and skills are important for nurses who practice in generalized and in specialized settings.

■ The structure, function, and processes of families have changed, but the family as a unit of analysis and service continues to survive over time.

■ Nurses should intervene in ways that promote health and wellness, as well as prevent illness risks, treat disease conditions, and manage rehabilitative care needs.

■ Knowledge about each family’s structure, function, and process informs the nurse in how to optimize nursing care in families and provide individualized nursing care, tailored to the uniqueness of every family system.

Family health care nursing is an art and a science, a philosophy and a way of interacting with families about health care. It has evolved since the early 1980s as a way of thinking about, and working with, families when a member experiences a health prob- lem. This philosophy and practice incorporates the following assumptions:

■ Health and illness affect all members of families.

■ Health and illness are family events. ■ Families influence the process and outcome

of health care.

All health care practices, attitudes, beliefs, be- haviors, and decisions are made within the context of larger family and societal systems.

Families vary in structure, function, and processes. The structure, functions, and processes of the family influence and are influenced by individual family

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member’s health status and the overall health status of the whole family. Families even vary within given cultures because every family has its own unique culture. People who come from the same family of origin create different families over time. Nurses need to be knowledgeable in the theories of families, as well as the structure, function, and processes of families to assist them in achieving or maintaining a state of health.

2010a). In addition, ANA’s Nursing: Scope and Stan- dards of Practice mandates that nurses provide family care (ANA, 2010b). “Nurses have an ethical and moral obligation to involve families in their health- care practices” (Wright & Leahey, 2013, p. 1).

The overall goal of this book is to enhance nurses’ knowledge and skills in the theory, practice, research, and social policy surrounding nursing care of families. This chapter provides a broad overview of family health care nursing. It begins with an exploration of the definitions of family and family health care nursing, and the concept of healthy families. This chapter goes on to describe four approaches to working with families: family as con- text, family as client, family as system, and family as a component of society. The chapter presents the varied, but ever-changing, family structures and explores family functions relative to reproduction, socialization, affective function, economic issues, and health care. Finally, the chapter discusses family processes, so that nurses know how their practice makes a difference when families experience stress because of the illness of individual family members.

THE FAMILY AND FAMILY HEALTH

Three foundational components of family nursing are: (1) determining how family is defined, (2) un- derstanding the concepts of family health, and (3) knowing the current evidence about the elements of a healthy family.

What Is the Family? There is no universally agreed-upon definition of family. Now more than ever, the traditional defini- tion of family is being challenged, with Canadian recognition of same-sex marriages and with several states in the United States giving same-sex families the freedom to marry. Family is a word that con- jures up different images for each individual and group, and the word has evolved in its meaning over time. Definitions differ by discipline, for example:

■ Legal: relationships through blood ties, adoption, guardianship, or marriage

■ Biological: genetic biological networks among and between people

■ Sociological: groups of people living together with or without legal or biological ties

■ Psychological: groups with strong emotional ties

4 Foundations in Family Health Care Nursing

When families are considered the unit of care—as opposed to individuals—nurses have much broader perspectives for approaching health care needs of both individual family members and the family unit as a whole (Kaakinen, Hanson, & Denham, 2010). Understanding families enables nurses to assess the family health status, ascertain the effects of the family on individual family members’ health status, predict the influence of alterations in the health status of the family system, and work with members as they plan and implement action plans customized for improved health for each individual family member and the family as a whole.

Recent advances in health care, such as changing health care policies and health care economics, ever-changing technology, shorter hospital stays, and health care moving from the hospital to the community/family home, are prompting changes from an individual person paradigm to the nursing care of families as a whole. This paradigm shift is affecting the development of family theory, prac- tice, research, social policy, and education, and it is critical for nurses to be knowledgeable about and at the forefront of this shift. The centrality of family- centered care in health care delivery is emphasized by the American Nurses Association (ANA) in its publication, Nursing’s Social Policy Statement (ANA,

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Historically, early family social science theorists (Burgess & Locke, 1953, pp. 7–8) adopted the following traditional definition in their writing:

The family is a group of persons united by ties of mar- riage, blood, or adoption, constituting a single house- hold; interacting and communicating with each other in their respective social roles of husband and wife, mother and father, son and daughter, brother and sis- ter; and creating and maintaining a common culture.

Currently, the U.S. Census Bureau defines family as two or more people living together who are re- lated by birth, marriage, or adoption (U.S. Census Bureau, 2011). This traditional definition continues to be the basis for the implementation of many social programs and policies. Yet, this definition excludes many diverse groups who consider themselves to be families and who perform family functions, such as economic, reproductive, and affective functions, as well as child socialization. Depending on the social norms, all of the following examples could be viewed as “family”: married or remarried couples with bio- logical or adoptive children, cohabitating same-sex couples (gay and lesbian families), single-parent fam- ilies with children, kinship care families such as two sisters living together, or grandparents raising grandchildren without the parents.

persons in health care planning with the patient’s permission.

What Is Family Health? The World Health Organization (2008) defined health to include a person’s characteristics, behav- iors, and physical, social, and economic environ- ment. This definition applies to individuals and to families. Anderson and Tomlinson (1992) sug- gested that the analysis of family health must include, simultaneously, health and illness, the in- dividual and the collective. They underscored evi- dence that the stress of a family member’s serious illness exerts a powerful influence on family func- tion and health, and that familial behavioral pat- terns or reactions to illness influence the individual family members. The term family health is often used interchangeably with the terms family func- tioning, healthy families, or familial health. To some, family health is the composite of individual family members’ physical health, because it is impossible to make a single statement about the family’s phys- ical health as a single entity.

The definition of family health adopted in this textbook and that applies from the previous edition (Kaakinen et al., 2010) is as follows: Family health is a dynamic, changing state of well-being, which includes the biological, psychological, spiritual, sociologi- cal, and culture factors of individual members and the whole family system. This definition and approach combines all aspects of life for individual members, as well as for the whole family. An individual’s health (on the wellness-to-illness continuum) affects the entire family’s functioning, and in turn, the family’s ability to function affects each individ- ual member’s health. Assessment of family health involves simultaneous data collection on individual family members and the whole family system (Craft-Rosenberg & Pehler, 2011).

What Is a Healthy Family? While it is possible to define family health, it is more difficult to describe a healthy family. Char- acteristics used to describe healthy families or fam- ily strengths have varied throughout time in the literature. Krysan, Moore, and Zill (1990) described “healthy families” as “successful families” in a report prepared by the U.S. Department of Health and Human Services. They identified some

Family Health Care Nursing: An Introduction 5

The definition of family adopted by this text- book and that applies from the previous edition (Kaakinen et al., 2010) is as follows: Family refers to two or more individuals who depend on one another for emotional, physical, and economic support. The members of the family are self-defined. Nurses who work with families should ask clients who they consider to be members of their family and should include those

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of the ideas put forward by many family scholars over time. For example, Otto (1963) was the first scholar to develop psychosocial criteria for assess- ing family strengths, and he emphasized the need to focus on positive family attributes instead of the pathological approach that accentuated family problems and weaknesses. Pratt (1976) introduced the idea of the “energized family” as one whose structure encourages and supports individuals to develop their capacities for full functioning and independent action, thus contributing to family health. Curran (1985) investigated not only family stressors but also traits of healthy families, incor- porating moral and task focus into traditional family functioning. These traits are listed in Box 1-1.

For more than three decades, Driver, Tabares, Shapiro, Nahm, and Gottman (2011) have studied the interactional patterns of marital success or fail- ure. The success of a marriage does not depend on the presence or the amount of conflict. Success of a marriage depends primarily on how the couple handles conflict. The presence of four characteris- tics of couple interaction was found to predict divorce with 94% accuracy (Carrere, Buehlman, Coan, Gottman, & Ruckstuhl, 2000):

1. Criticism: These are personal attacks that consist of negative comments, to and about

each other, that occur over time and that erode the relationship.

2. Contempt: This is the most corrosive of the four characteristics between the couple. Contempt includes comments that convey disgust and disrespect.

3. Defensiveness: Each partner blames the other in an attempt to deflect a verbal attack.

4. Stonewalling: One or both of the partners refuse to interact or engage in interaction, both verbally and nonverbally.

In contrast, conflict is addressed in three ways in positive, healthy marriages. Validators talk their problems out, expressing emotions and opinions, and are skilled at reaching a compromise. Volatiles are two partners who view each other as equals, as they engage in loud, passionate, explosive interac- tions that are balanced by a caring, loving relation- ship. Their conflicts do not include the four negative characteristics identified earlier. The last type of couple is the Avoiders. Avoiders simply agree not to engage in conflicts, thus minimizing the cor- rosive effects of negative conflict resolution. The crucial point in all three styles of healthy conflict is that both partners engage in a similar style. Thus how conflict is used and resolved in the parental or couple dyad relationship suggests the health and longevity of the family unit.

The described positive interactions occur far more often than the negative interactions in hap- pily married couples. These healthy family couples find ways to work out their differences and prob- lems, are willing to yield to each other during their arguments, and make purposeful attempts to repair their relationship.

Olson and Gorall (2005) conducted a longitudi- nal study on families, in which they merged the concepts of marital and family dynamics in the Circumplex Model of Marital and Family Systems. They found that the ability of the family to demon- strate flexibility is related to its ability to alter fam- ily leadership roles, relationships, and rules, including control, discipline, and role sharing. Functional, healthy families have the ability to change these factors in response to situations. Dys- functional families, or unhealthy families, have less ability to adapt and flex in response to changes. See Figures 1-1 and 1-2, which depict the differences in functional and dysfunctional families in the Cir- cumplex Model. Balanced families will function more adequately across the family life cycle and

6 Foundations in Family Health Care Nursing

BOX 1-1 Traits of a Healthy Family

■ Communicates and listens ■ Fosters table time and conversation ■ Affirms and supports each member ■ Teaches respect for others ■ Develops a sense of trust ■ Has a sense of play and humor ■ Has a balance of interaction among members ■ Shares leisure time ■ Exhibits a sense of shared responsibility ■ Teaches a sense of right and wrong ■ Abounds in rituals and traditions ■ Shares a religious core ■ Respects the privacy of each member ■ Values service to others ■ Admits to problems and seeks help

Source: From Kaakinen, J. R., Hanson, S. M. H., & Denham, S. (2010). Family health care nursing: An introduction. In J. W. Kaakinen, V. Gedaly-Duff, D. P. Coehlo, & S. M. H. Hanson (Eds.), Family health care nursing: Theory, practice and re- search (4th ed.). Philadelphia, PA: F. A. Davis, with permission.

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Family Health Care Nursing: An Introduction 7

BALANCED FAMILY

Rigid, Inflexible

One person is in charge and is highly controlling.

Negotiation is limited.

Rules do not change.

Roles are strictly enforced.

Leadership is democratic.

Roles are stable; there is some role sharing.

Rules are enforced with few changes.

Leadership is equalitarian with a democratic approach to decision making.

Negotiation is open and actively includes children.

Roles are shared and are age appropriate.

There are frequent changes in leadership and roles.

Rules are flexible and readily adjusted.

Leadership is erratic and limited.

Decisions are impulsive.

Roles are unclear and shift from person to person.

Flexible Family

Very Flexible

Chaotic, Overly Flexible

Somewhat Inflexible

FIGURE 1-1 Family flexibility continuum.

BALANCED FAMILY

Cohesion Disconnected

There is extreme emotional separateness.

There is little family involvement.

Family does not turn to each other for support.

Members have some time apart from family but also spend some time together.

Joint support and decision making take place.

Strike equilibrium with moderate separateness and togetherness.

Family members can be both independent and connected to the family.

Decision making is shared.

There is emotional closeness and loyalty.

More time is spent together than alone.

Family members have separate and shared couple friends.

There is extreme emotional connection, and loyalty is demanded.

There is little private space. Family members are highly dependent on each other and reactive to each other.

Connected Very Connected

Overly Connected

Somewhat Connected

FIGURE 1-2 Family cohesion continuum.

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tend to be healthier families. The family commu- nication skills enable balance and help families to adjust and adapt to situations. Couples and families modify their levels of flexibility and cohesion to adapt to stressors, thus promoting family health.

FAMILY HEALTH CARE NURSING

The specialty area of family health care nursing has been evolving since the early 1980s. Some question how family health care nursing is distinct from other specialties that involve families, such as maternal-child health nursing, community health nursing, and mental health nursing. The definition and framework for family health care nursing adopted by this textbook and that applies from the previous edition (Kaakinen et al., 2010) is as follows:

The process of providing for the health care needs of families that are within the scope of nursing practice. This nursing care can be aimed toward the family as context, the family as a whole, the family as a system, or the family as a component of society.

Family nursing takes into consideration all four approaches to viewing families. At the same time, it cuts across the individual, family, and community for the purpose of promoting, maintaining, and restoring the health of families. This framework illustrates the intersecting concepts of the individual, the family, nursing, and society (Fig. 1-3).

Another way to view family nursing practice is conceptually, as a confluence of theories and strate- gies from nursing, family therapy, and family social science as depicted in Figure 1-4. Over time, family nursing continues to incorporate ideas from family therapy and family social science into the practice of family nursing. See Chapter 3 for discussion about how theories from family social science, fam- ily therapy, and nursing converge to inform the nursing of families.

Several family scholars have written about lev- els of family health care nursing practice. For ex- ample, Wright and Leahey (2013) differentiated among several levels of knowledge and skills that family nurses need for a generalist versus special- ist practice, and they defined the role of higher education for the two different levels of practice. They propose that nurses receive a generalist or basic level of knowledge and skills in family nursing during their undergraduate work, and ad- vanced specialization in family nursing or family therapy at the graduate level. They recognize that advanced specialists in family nursing have a narrower focus than generalists. They purport, however, that family assessment is an important skill for all nurses practicing with families. Bomar (2004) further delineated five levels of family health care nursing practice using Benner’s levels of practice: expert, proficient, competent, ad- vanced beginner, and novice. See Table 1-1, which describes how the two levels of generalist and advanced practice have been delineated fur- ther with levels of education and types of clients (Benner, 2001).

8 Foundations in Family Health Care Nursing

FIGURE 1-3 Family nursing conceptual framework.

Nursing models

Family therapy theory

Family social science theory

Family nursing

FIGURE 1-4 Family nursing practice.

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NATURE OF INTERVENTIONS IN FAMILY NURSING

The following 10 interventions family nurses use provide structure to working with families regard- less of the theoretical underpinning of the nursing approach. These are enduring ideas that support the practice of family nursing (Gilliss, Roberts, Highley, & Martinson, 1989; Kaakinen et al., 2010):

1. Family care is concerned with the experience of the family over time. It considers both the history and the future of the family group.

2. Family nursing considers the community and cultural context of the group. The fam- ily is encouraged to receive from, and give to, community resources.

3. Family nursing considers the relationships between and among family members, and recognizes that, in some instances, all indi- vidual members and the family group will not achieve maximum health simultaneously.

4. Family nursing is directed at families whose members are both healthy and ill regardless of the severity of the illness in the family member.

5. Family nursing is often offered in settings where individuals have physiological or psychological problems. Together with competency in treatment of individual health problems, family nurses must recog- nize the reciprocity between individual family members’ health and collective health within the family.

6. The family system is influenced by any change in its members. Therefore, when caring for individuals in health and illness, the nurse must elect whether to attend to the family. Individual health and collective health are intertwined and will be influenced by any nursing care given.

7. Family nursing requires the nurse to ma- nipulate the environment to increase the likelihood of family interaction. The physi- cal absence of family members, however, does not preclude the nurse from offering family care.

8. The family nurse recognizes that the person in a family who is most symptomatic may change over time; this means that the focus of the nurse’s attention will also change over time.

Family Health Care Nursing: An Introduction 9

Table 1-1 Levels of Family Nursing Practice

Level of Practice Generalist/Specialist Education Client

Expert

Proficient

Competent

Advanced beginner

Novice

All levels

Family nursing theory development

Family nursing research

All levels

Beginning family nursing research

Individual in the family context

Interpersonal family nursing

Family unit

Family aggregates

Individual in the family context

Interpersonal family nursing (family systems nursing)

Family unit

Individual in the family context

Advanced specialist

Advanced specialist

Beginning specialist

Generalist

Generalist

Doctoral degree

Master’s degree with added experience

Master’s degree

Bachelor’s degree with added experience

Bachelor’s degree

Source: Bomar, P. J. (Ed.). (2004). Promoting health in families: Applying family research and theory to nursing practice (3rd ed.). Philadelphia, PA: Saunders/Elsevier, with permission.

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9. Family nursing focuses on the strengths of individual family members and the family group to promote their mutual support and growth.

10. Family nurses must define with the family which persons constitute the family and where they will place their therapeutic energies.

These are the distinctive intervention statements specific to family nursing that appear continuously in the care and study of families in nursing, regard- less of the theoretical model in use.

APPROACHES TO FAMILY NURSING

Four different approaches to care are inherent in family nursing: (1) family as the context for indi- vidual development, (2) family as a client, (3) family as a system, and (4) family as a component of soci- ety (Kaakinen et al., 2010). Figure 1-5 illustrates these approaches to the nursing of families. Each approach derived its foundations from different nursing specialties: maternal-child nursing, pri- mary care nursing, psychiatric/mental health nurs- ing, and community health nursing, respectively. All four approaches have legitimate implications for nursing assessment and intervention. The ap- proach that nurses use is determined by many fac- tors, including the health care setting, family circumstances, and nurse resources. Figure 1-6 shows how a nurse can view all four approaches to families through just one set of eyes. It is important to keep all four perspectives in mind when working with any given family.

Family as Context The first approach to family nursing care focuses on the assessment and care of an individual client in which the family is the context. Alternate labels for this approach are family centered or family focused. This is the traditional nursing focus, in which the individual is foreground and the family is background. The family serves as context for the individual as either a resource or a stressor to the individual’s health and illness. Most existing nurs- ing theories or models were originally conceptual- ized using the individual as a focus. This approach is rooted in the specialty of maternal-child nursing and underlies the philosophy of many maternity

and pediatric health care settings. A nurse using this focus might say to an individual client: “Who in your family will help you with your nightly med- ication?” “How will you provide for child care when you have your back surgery?” or “It is won- derful for you that your wife takes such an interest in your diabetes and has changed all the food preparation to fit your dietary needs.”

Family as Client The second approach to family nursing care cen- ters on the assessment of all family members. The family nurse is interested in the way all the family members are individually affected by the health event of one family member. In this approach, all members of the family are in the foreground. The family is seen as the sum of individual family mem- bers, and the focus concentrates on each individual. The nurse assesses and provides health care for each person in the family. This approach is seen typically in primary care clinics in the communities where primary care physicians (PCPs) or nurse practitioners (NPs) provide care over time to all individuals in a given family. From this perspective, a nurse might ask a family member who has just be- come ill: “How has your diagnosis of juvenile dia- betes affected the other individuals in your family?” “Will your nightly need for medication be a prob- lem for other members of your family?” “Who in your family is having the most difficult time with your diagnosis?” or “How are the members of your family adjusting to your new medication regimen?”

Family as System The third approach to care views the family as a system. The focus in this approach is on the family as a whole as the client; here, the family is viewed as an interactional system in which the whole is more than the sum of its parts. In other words, the interactions between family members become the target for the nursing interventions. The interven- tions flow from the assessment of the family as a whole. The family nursing system approach focuses on the individual and family simultaneously. The emphasis is on the interactions between family members, for example, the direct interactions be- tween the parental dyad or the indirect interaction between the parental dyad and the child. The more children there are in a family, the more complex these interactions become.

10 Foundations in Family Health Care Nursing

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This interactional model had its start with the specialty of psychiatric and mental health nursing. The systems approach always implies that when something happens to one part of the system, the other parts of the system are affected. Therefore, if

one family member becomes ill, it affects all other members of the family. Examples of questions that nurses may ask in a systems approach include the fol- lowing: “What has changed between you and your spouse since your child was diagnosed with juvenile

Family Health Care Nursing: An Introduction 11

Family as System

Interactional family

Family as Component of Society

Legal

Financial

EducationFamily Health

Religion Social

Church

School Family Home

Bank

Medical Center

Family as Context

Individual as foreground Family as background

Family as Client

Family as foreground Individual as background

+ + + +

FIGURE 1-5 Approaches to family nursing.

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diabetes?” or “How has the diagnosis of juvenile diabetes affected the ways in which your family is functioning and getting along with each other?”

Family as Component of Society The fourth approach to care looks at the family as a component of society, in which the family is viewed as one of many institutions in society, sim- ilar to health, educational, religious, or economic institutions. The family is a basic or primary unit of society, and it is a part of the larger system of society (Fig. 1-7). The family as a whole interacts with other institutions to receive, exchange, or give communication and services. Family social scien- tists first used this approach in their study of fami- lies in society. Community health nursing has drawn many of its tenets from this perspective as it focuses on the interface between families and com- munity agencies. Questions nurses may ask in this approach include the following: “What issues has the family been experiencing since you made the school aware of your son’s diagnosis of HIV?” or “Have you considered joining a support group for families with mothers who have breast cancer? Other families have found this to be an excellent resource and a way to reduce stress.”

VARIABLES THAT INFLUENCE FAMILY NURSING

Family health care nursing has been influenced by many variables that are derived from both historical and current events within society and the profession of nursing. Examples include changing nursing

theory, practice, education, and research; new knowledge derived from family social sciences and the health sciences; national and state health care policies; changing health care behavior and atti- tudes; and national and international political events. Chapters 3 and 5 provide detailed discus- sions of these areas.

Figure 1-8 illustrates how many variables influ- ence contemporary family health nursing, making the point that the status of family nursing is dependent on what is occurring in the wider society—family as community. A recent example of this point is that health practices and policy changes are under way because of the recognition that current costs of health care are escalating and, at the same time, greater numbers of people are un- derinsured or uninsured and have lost access to health care. The goal of this health care reform is to make access and treatment available for everyone at an affordable cost. That will require a major shift in priorities, funding, and services. A major move- ment toward health promotion and family care in the community will greatly affect the evolution of family nursing.

FAMILY NURSING ROLES

Families are the basic unit of every society, but it is also true that families are complex, varied, dynamic,

12 Foundations in Family Health Care Nursing

System

Component

Context

Client

FIGURE 1-6 Four views of family through a lens.

Society

Family

Individual

FIGURE 1-7 Family as primary group in society.

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and adaptive, which is why it is crucial for all nurses to be knowledgeable about the scientific discipline of family nursing, and the variety of ways nurses may interact with families (Kaakinen et al., 2010). The roles of family health care nurses are evolving along with the specialty. Figure 1-9 lists the many roles that nurses can assume with families as the focus. This figure was constructed from some of the first family nursing literature that appeared, and

it is a composite of what various scholars believe to be some of the current roles of nurses. Keep in mind that the health care setting affects roles that nurses assume with families.

Health teacher: The family nurse teaches about family wellness, illness, relations, and parenting, to name a few topics. The teacher-educator function is ongoing in all settings in both formal and informal

Family Health Care Nursing: An Introduction 13

Technology-Internet Megatrends Economy Policies Housing Education Media Health care delivery system Environmental Culture

Policy Making/Agendas

United Nations Families Health

United States/Canada Health Families Economic Child Care Environmental

State and Local Governments Divorce laws Health care Economics

Organizations

National Council of Family Relations Children's Defense Fund Groves Family Conference Marriage and Family Therapists Associations Religious Organizations

..

.....

...

SOCIETY

Policy Related Theories/ Agendas

Strengths Perspective Family Stress and Coping Family Systems Family Process Family Structure & Function Family Development Self-Care Health Promotion Family Interaction

Related Disciplines

Anthropology Family Sociology Family Psychology Family Therapy Family Science Behavioral Sciences Theology Social Work

THEORIES

Primary care (health promotion) Secondary care (health protection) Tertiary care (recovery/rehabilitation) Families Health Vulnerable to illness or dysfunction Acute illness & recovery Chronic illness/ rehabilitation

FAMILY HEALTH NURSING

..

.

.

Nursing Organizations

American Nurses Association Standards of Nursing Practice Social Policy Statement Agenda for Health Care Reform National League of Nursing Accreditation Standards American Association of Colleges of Nurses Family nursing interest groups (i.e., ANA Council of Nurse Researchers and Western Nursing Research Society) National Association of Nurse Practitioners International Family Nursing Biennial Conference

Family Nursing Theory/Research Nursing Paradigm

Family Nursing Research Family transitions Chronic illness and the family Acute illness and the family Health Promotion Single Parents and Health

Specialties in Nursing

Family nurse practitioner Maternal child nursing Family and community health nursing Psychiatric mental health nursing Home health nursing Pediatric nursing

.

..

NURSING

.

FIGURE 1-8 Variables that influence contemporary family health care. (From Bomar, P. J. [Ed.]. [2004]. Promoting health in families: Applying family research and theory to nursing practice [3rd ed., p. 17]. Philadelphia, PA: Saunders/Elsevier, with permission.)

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ways. Examples include teaching new parents how to care for their infant and giving instructions about diabetes to a newly diagnosed adolescent boy and his family members.

Coordinator, collaborator, and liaison: The family nurse coordinates the care that families re- ceive, collaborating with the family to plan care. For example, if a family member has been in a trau- matic accident, the nurse would be a key person in helping families to access resources—from inpa- tient care, outpatient care, home health care, and social services to rehabilitation. The nurse may serve as the liaison among these services.

“Deliverer” and supervisor of care and tech- nical expert: The family nurse either delivers or supervises the care that families receive in various settings. To do this, the nurse must be a technical expert both in terms of knowledge and skill. For example, the nurse may be the person going into the family home on a daily basis to consult with the family and help take care of a child on a respirator.

Family advocate: The family nurse advocates for families with whom he works; the nurse empowers family members to speak with their own voice, or the nurse speaks out for the family. An example is a school nurse advocating for special education services for a child with attention-deficit hyperactivity disorder.

Consultant: The family nurse serves as a consultant to families whenever asked or whenever necessary. In some instances, she consults with agencies to

facilitate family-centered care. For example, a clini- cal nurse specialist in a hospital may be asked to as- sist the family in finding the appropriate long-term care setting for their sick grandmother. The nurse comes into the family system by request for a short period and for a specific purpose.

Counselor: The family nurse plays a therapeutic role in helping individuals and families solve prob- lems or change behavior. An example from the mental health arena is a family that requires help with coping with a long-term chronic condition, such as when a family member has been diagnosed with schizophrenia.

“Case-finder” and epidemiologist: The family nurse gets involved in case-finding and becomes a tracker of disease. For example, consider the situation in which a family member has been recently diag- nosed with a sexually transmitted disease. The nurse would engage in sleuthing out the sources of the transmission and in helping other sexual contacts to seek treatment. Screening families and subsequent re- ferral of the family members may be a part of this role.

Environmental specialist: The family nurse con- sults with families and other health care professionals to modify the environment. For example, if a man with paraplegia is about to be discharged from the hospital to home, the nurse assists the family in mod- ifying the home environment so that the patient can move around in a wheelchair and engage in self-care.

Clarify and interpret: The nurse clarifies and in- terprets data to families in all settings. For example, if a child in the family has a complex disease, such as leukemia, the nurse clarifies and interprets in- formation pertaining to diagnosis, treatment, and prognosis of the condition to parents and extended family members.

Surrogate: The family nurse serves as a surrogate by substituting for another person. For example, the nurse may stand in temporarily as a loving par- ent to an adolescent who is giving birth to a child by herself in the labor and delivery room.

Researcher: The family nurse should identify practice problems and find the best solution for dealing with these problems through the process of scientific investigation. An example might be

14 Foundations in Family Health Care Nursing

Theory developer

Advocate

Role model

Researcher

Surrogate

Environmental modifier

Technical expert (Deliver/supervise care)

Coordinator collaborator

Liaison

Counselor

Clarifier-interpreter

Case finder (Epidemiologist)

Case manager

Health education

Consultant

Family

FIGURE 1-9 Family nursing roles.

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collaborating with a colleague to find a better intervention for helping families cope with incon- tinent elders living in the home.

Role model: The family nurse is continually serv- ing as a role model to other people. A school nurse who demonstrates the right kind of health in per- sonal self-care serves as a role model to parents and children alike.

Case manager: Although case manager is a con- temporary name for this role, it involves coordina- tion and collaboration between a family and the health care system. The case manager has been em- powered formally to be in charge of a case. For example, a family nurse working with seniors in the community may become assigned to be the case manager for a patient with Alzheimer’s disease.

OBSTACLES TO FAMILY NURSING PRACTICE

There are several obstacles to practicing family nursing. A vast amount of literature is available about families, but there has been little taught about families in the nursing curricula until the past three decades. Most practicing nurses have not had exposure to family theory or concepts dur- ing their undergraduate education and continue to practice using the individualist paradigm. Even though there are several family assessment models and approaches, families are complex, so no one as- sessment approach fits all family situations. There is a paucity of valid and reliable psychometrically tested family evaluation instruments.

Furthermore, some students and nurses may be- lieve that the study of family and family nursing is “common sense,” and therefore does not belong formally in nursing curricula, either in theory or practice. Nursing also has strong historical ties with the medical model, which has traditionally focused on the individual as client, rather than the family. At best, families have been viewed in context, and many times families were considered a nuisance in health care settings—an obstacle to overcome to provide care to the individual.

Another obstacle is the fact that the traditional charting system in health care has been oriented to the individual. For example, charting by exception focuses on the physical care of the individual and

does not address the whole family or members of families. Likewise, the medical and nursing diagnos- tic systems used in health care are disease centered, and diseases are focused on individuals and have lim- ited diagnostic codes that pertain to the family as a whole. To complicate matters further, most insur- ance companies require that there be one identified patient, with a diagnostic code drawn from an indi- vidual disease perspective. Thus, even if health care providers are intervening with entire families, com- panies require providers to choose one person in the family group as the identified patient and to give that person a physical or mental diagnosis, even though the client is the whole family. Although there are family diagnostic codes that address care with fami- lies, insurance companies may not pay for care for those codes, especially if the care is more psycholog- ical or educational in nature. See Chapter 4 for a detailed discussion on diagnostic codes.

The established hours during which health care systems provide services pose another obstacle to focusing on families. Traditionally, office hours take place during the day, when family members cannot accompany other family members. Recently, some urgent care centers and other outpatient set- tings have incorporated evening and weekend hours into their schedules, making it possible for family members to come in together. But many clinics and physician offices still operate on traditional Monday through Friday, 9:00 a.m. to 5:00 p.m. schedules, thus making it difficult for all family members to at- tend together. These obstacles to family-focused nursing practice are slowly changing; nurses should continue to lobby for changes that are more con- ducive to caring for the family as a whole.

HISTORICAL PERSPECTIVES

A brief historical outline of the development of the specialty of family nursing will help nurses under- stand how nurses have actually always provided care for the family from several different view- points. An outline of the history of families in North America is presented to provide an overview of the family development up until present time.

History of Family Nursing Family health nursing has roots in society from pre- historic times. The historical role of women has been inextricably interwoven with the family, for it was the

Family Health Care Nursing: An Introduction 15

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responsibility of women to care for family members who fell ill and to seek herbs or remedies to treat the illness. Women have been the primary child care providers throughout history. In addition, through “proper” housekeeping, women made efforts to pro- vide clean and safe environments for the maintenance of health and wellness for their families (Bomar, 2004; Ham & Chamings, 1983; Whall, 1993).

During the Nightingale era in the late 1800s, the development of nursing families became more explicit. Florence Nightingale influenced both the establishment of district nursing of the sick and poor, and the work of “health missionaries” through “health-at-home” teaching. She believed that cleanliness in the home could eradicate high infant mortality and morbidity rates. She encour- aged family members of the fighting troops to come into the hospitals during the Crimean War to take care of their loved ones. Nightingale sup- ported helping women and children achieve good health by promoting both nurse midwifery and home-based health services. In 1876, in a docu- ment titled “Training Nurses for the Sick Poor,” Nightingale encouraged nurses to serve in nursing both sick and healthy families in the home environ- ment. She gave both home-health nurses and maternal-child nurses the mandate to carry out nursing practice with the whole family as the unit of service (Nightingale, 1979).

In colonial America, women continued the centuries-old traditions of nurturing and sustaining the wellness of their families and caring for the ill. During the industrial revolution of the late 18th century, family members began to work outside the home. Immigrants, in particular, were in need of income, so they went to work for the early hospi- tals. This was the real beginning of public health and school nursing. The nurses involved in the beginning of the labor movement were concerned with the health of workers, immigrants, and their families. Concepts of maternal-child and family care were incorporated into basic curricu- lums of nursing schools. In fact, maternity nursing, nurse midwifery, and community nursing histori- cally focused on the quality of family health. Margaret Sanger fought for family planning. Mary Breckenridge formed the famous Frontier Nursing Service (midwifery) to provide training for nurses to meet the health needs of mountain families.

A concerted expansion of public health nursing occurred during the Great Depression to work

with families as a whole. Nevertheless, before and during World War II, nursing became more focused on the individual, and care became central- ized in institutional and hospital settings, where it remained until recently.

Since the 1950s, at least 19 disciplines have stud- ied the family and, through research, produced fam- ily assessment techniques, conceptual frameworks, theories, and other family material. Recently, this interdisciplinary work has become known as family social science. Family social science has greatly in- fluenced family nursing in the United States, largely because of the professional interdisciplinary group called National Council of Family Relations and its large number of family publications. Many family nurses have become active in this organization. In addition, some nurses are now receiving advanced degrees in family social science departments around the country.

Nursing theorists started in the 1960s to system- atize nursing practice. Scholars began to articulate the philosophy and goals of nursing care. Initially, theo- rists were concerned only with individuals, but grad- ually, individuals became viewed as part of a larger social system. Also in the 1960s, the NP movement began espousing the family as a primary unit of care in practice, although the grand theories of nursing focused primarily on the individual and not families.

The 1980s saw a shift in focus to families as a unit of care in America and Canada. Small numbers of people across these countries gathered together to discuss and share family nursing concepts. Fam- ily nurses started defining the scope of practice, family concepts, and how to teach this information to the next generation of nurses. Family nursing has both old and new traditions and definitions. The discipline and science of family nursing is now beyond youth, more like a young adult, but still in a state of growing up and maturing. The first na- tional family nursing conferences were held in the United States (Portland, Oregon) in 1986–1989. The International Family Nursing Conferences (IFNC) began in the late 1980s and has been held around the world every 2 or 3 years since that time. The 11th International Family Nursing Confer- ence was held in June 2013 in Minneapolis, Min- nesota. The International Family Nursing Association (IFNA) grew out of IFNC and became active in 2009–2010. See Table 1-2 for a composite of historical factors that contributed to the devel- opment of family health as a focus in nursing.

16 Foundations in Family Health Care Nursing

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Family Health Care Nursing: An Introduction 17

Table 1-2 Historical Factors Contributing to the Development of Family Health as a Focus in Nursing

Time Period Events

Pre-Nightingale era

Mid-1800s

Late 1800s

Early 1900s

1960s

1970s

1980s

Revolutionary War “camp followers” were an example of family health focus before Florence Nightingale’s influence.

Nightingale influences district nurses and health missionaries to maintain clean environment for patients’ homes and families.

Family members provided for soldiers’ needs during Civil War through Ladies Aid Societies and Women’s Central Association for Relief.

Industrial Revolution and immigration influence focus of public health nursing on prevention of illness, health education, and care of the sick for both families and communities.

Lillian Wald establishes Henry Street Visiting Nurse Service (1893).

Focus on family during childbearing by maternal-child nurses and midwives.

School of nursing established in New York City (1903).

First White House Conference on Children occurs (1909).

Red Cross Town and Country Nursing Service was founded (1912).

Margaret Sanger opens first birth control clinic (1916).

Family planning and quality care become available for families.

Mary Breckinridge forms Frontier Nursing Service (1925).

Nurses are assigned to families.

Red Cross Public Health Nursing Service meets rural health needs after stock market crash (1929).

Federal Emergency Relief Act passed (1933).

Social Security Act passed (1935).

Psychiatry and mental health disciplines begin family therapy focus (late 1930s).

Concept of family as a unit of care is introduced into basic nursing curriculum.

National League for Nursing (NLN) requires emphasis on families and communities in nursing curriculum.

Family-centered approach in maternal-child nursing and midwifery programs is begun.

Nurse-practitioner movement, programs to provide primary care to children begin (1965).

Shift from public health nursing to community health nursing occurs.

Family studies and research produce family theories.

Changing health care system focuses on maintaining health and returning emphasis to family health.

Development and refinement of nursing conceptual models that consider the family as a unit of analysis or care occur (e.g., King, Newman, Orem, Rogers, and Roy).

Many specialties focus on the family (e.g., hospice, oncology, geriatrics, school health, psychiatry, mental health, occupational health, and home health).

Master’s and doctoral programs focus on the family (e.g., family health nursing, community health nursing, psychiatry, mental health, and family counseling and therapy).

ANA Standards of Nursing Practice are implemented (1973).

Surgeon General’s Report focuses on healthy people, health promotion, and disease prevention (1979).

ANA Social Policy Statement (1980).

White House Conference on Families.

Greater emphasis is put on health from very young to very old.

Increasing emphasis is placed on obesity, stress, chemical dependency, and parenting skills.

Graduate level specialization begins, with emphasis on primary care outside of acute care settings, health teaching, and client self-care.

(continued)

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18 Foundations in Family Health Care Nursing

Table 1-2 Historical Factors Contributing to the Development of Family Health as a Focus in Nursing—cont’d

Time Period Events

1990s

2000s

Use of wellness and nursing models in providing care increases.

Promoting Health/Preventing Disease: Objective for the Nation (1980) is released by U.S. Department of Health and Human Services.

Family science develops as a discipline.

Family nursing research increases.

National Center for Nursing Research is founded, with a Health Promotion and Prevention Research section.

First International Nursing Conference occurs in Calgary, Canada (1988).

Healthy People 2000: National Health Promotion and Disease Prevention Objective (1990) is released by U.S. Department of Health and Human Services.

Nursing’s Agenda for Health Care Reform is developed (ANA, 1991).

Family leave legislation is passed (1991).

Journal of Family Nursing is created (1995).

Nursing’s Agenda for the Future is written (ANA, 2002).

Healthy People 2010 and Healthy People 2020 are released from U.S. Department of Health and Human Services.

The quality and quantity of family nursing research continue to increase, especially in the international sector.

Family-related research is clearly a goal of the National Institute of Nursing Research Themes for the Future (NINR, 2003).

World Health Organization document Health for All in the 21st Century calls for support of families.

The National Council on Family Relations prepared the NCFR Presidential Report 2001: Preparing Families for the Future.

International Family Nursing Conferences start meeting every 2 years instead of every 3 years.

Adapted from Bomar, P. J. (Ed.). (2004). Promoting health in families: Applying family research and theory to nursing practice (3rd ed.). Philadelphia, PA: Saunders/Elsevier.

History of Families A brief macro-analytical history of families is im- portant to an understanding of family nursing. The past helps to make the present realities of family life more understandable, because the influence of the past is evident in the present. This historical approach provides a means of conceptualizing fam- ily over time and within all of society. History helps to dispel preferences for family forms that are only personally familiar and broaden nurses’ views of the world of families.

Prehistoric Family Life Archaeologists and anthropologists have found evidence of prehistoric family life, existing before the time of written historical sources. These fam- ily forms varied from present-day forms, but the functions of the family have been assumed to have

remained somewhat constant over time. Families were then and are now a part of the larger commu- nity and constitute the basic unit of society.

It is postulated that the family structure, process, and function were a response to everyday needs in prehistoric times, just as they are in modern times. As communities grew, families and communities became more institutionalized and homogeneous as civilization progressed. Family culture was that aspect of life derived from membership in a partic- ular group and shared by others. Family culture was composed of values and attitudes that allowed early families to behave in a predictable fashion.

Man and woman dyads are the oldest and most tenacious unit in history. Biologically, human chil- dren need care and protection longer than other animals’ offspring. These needs led humans to form long-term relationships. Economic pairing was not always the same as reproductive pairing,

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but it was a by-product of reproductive pairing. Moreover, a variety of skills were required for liv- ing, and no single person possessed all skills; there- fore, male and female roles began to differ and become defined. Early in history, children were part of the economic unit. As small groups of con- jugal families formed communities, the complexity of the social order increased.

European History Many Americans are of European ancestry and stem from the family structure that was present there. Social organizations called families emphasized consanguineous (genetic) bonds. The tendency to- ward authority was concentrated in a few individuals at the top of the hierarchical structure (kings, lords, fathers). Men were the heads of families.

Property of family transferred through the male line. Women left home to join their husbands’ families. Mothers did not establish strong bonds with their daughters because the daughters even- tually left their homes of origin to join their hus- bands’ families of origin. Women and children were property to be transferred. Marriage was a contract between families, not individuals. Ex- tended patriarchal family characteristics prevailed until the advent of industrialism.

Industrialization Great stability existed within family systems until the Industrial Revolution. The revolution first ap- peared in England around 1750 and spread to Western Europe and North America. Some believe that the nuclear family idea started with the Indus- trial Revolution. Extended families had always been the norm until families left farms and moved into the cities, or until men left their families in order to work in the factories. Some women stayed at home, maintaining the house and caring for the children, while other women and children took up labor in the city factories.

When factories of the Industrial Revolution started to be built, people began moving about. The state had begun to provide services that families pre- viously had performed for their members. Informal contractual arrangements between public and state power and nuclear families took place, in which the state gave fathers the power and authority over their families in exchange for male individuals giving the state their loyalty and service. Women were not expected to love husbands but to obey them.

Society today is still living with bequests of pa- triarchal family life. Women are still struggling to get out from under the rules and expectations of the state and of men. The women’s movement and the National Organization for Women (NOW) are two of the forces that have improved the level of equality of women in modern society. A lot more work needs to be done on the issues of equality for all Americans, including gender differences.

In recent years, men have also begun identifying the bondage they experience. They cannot meet all of the needs of families and feel inadequate for fail- ing to do so. This is especially true of men who can- not access the resources of money, occupation, and occupational status through education. A men’s movement is afoot that is promoting male causes, although this movement is not as dynamic as it may be in the future. One of the organizations support- ing this work is the National Congress for Men.

North American Families North American society and families were molded from the beginning by economic logic rather than consanguineous logic. America does not have the history of Europe’s preindustrial age. English pa- triarchy was not transplanted in its pure form to America. Both women and men had to labor in the New World. This gave women new power. Also, the United States had an ethic of achieved status rather than status inherited through familial lines.

Children were also experiencing a changing sta- tus in American families. Originally, they were part of the economic unit and worked on farms. Then with the great immigration of the early 1900s, the expectation shifted to parents creating a better world for their children than they themselves had. To do this, children had to become more educated to deal with the developing society. Each generation of children has generally obtained more education and income than their parents; they left the family farms and moved to distant cities. As a result of this change, parents lost assurance that their children would take care of them during their old age.

In addition, the functions of families were changing greatly. The traditional roles that families played were being displaced by the growing num- bers and kinds of social institutions. Families began increasingly surrendering to public agencies many of the socialization functions they previously per- formed, such as child education, health care, and child care.

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Families Today Today, families cannot be separated from the larger system of which they are a part, nor can they be sep- arated from their historical past. Some people argue that families are in terrible condition, like a rudder- less ship in the dark. Other people hail the changes that continue to occur in families, and approve the diversity and options that address modern needs. Idealizing past family arrangements and decrying change has become commonplace in the media. Just as some families of both the past and present engage in behaviors that are destructive to individuals and other social institutions, there are families of the past and present that provide healthy environments. The structure, function, and processes of families have changed, but the family will continue to sur- vive and thrive. It is, in fact, the most tenacious unit in society (Kaakinen et al., 2010).

FAMILY STRUCTURE, FUNCTION, AND PROCESS

Knowledge about family structure, functions, and processes is essential for understanding the com- plex family interactions that affect health, illness, and well-being (Kaakinen et al., 2010). Knowl- edge emerging from the study of family structure, function, and process suggests concepts and a framework that nurses can use to provide effective assessment and intervention with families. Many internal and external family variables affect indi- vidual family members and the family as a whole. Internal family variables include unique individual characteristics, communication, and interactions, whereas external family variables include location of family household, social policy, and economic trends. Family members generally have compli- cated responses to all of these factors. Although some external factors may not be easily modifi- able, nurses can assist family members to manage change, conflict, and care needs. For instance, a sudden downturn in the economy could result in the family breadwinner becoming unemployed. Although nurses are unable to alter this situation directly, understanding the implications on the family situation provides a basis for planning more effective interventions that may include financial support programs for families. Nurses can assist members with coping skills, communication pat- terns, location of needed resources, effective use

of information, or creation of family rituals or routines (Kaakinen et al., 2010).

Nurses who understand the concepts of family structure, function, and process can use this knowl- edge to educate, counsel, and implement changes that enable families to cope with illness, family cri- sis, chronic health conditions, and mental illness. Nurses prepared to work with families can assist them with needed life transitions (Kaakinen et al., 2010). For example, when a family member expe- riences a chronic condition such as diabetes, family roles, routines, and power hierarchies may be chal- lenged. Nurses must be prepared to address the complex and holistic family problems resulting from illness, as well as to care for the individual’s medical needs.

Family Structure Family structure is the ordered set of relationships within the family, and between the family and other social systems (Denham, 2005). There are many tools available for nurses to use in conducting assessments of family structure. The most funda- mental tools are family genograms and ecomaps, which will be introduced later in this chapter. These tools are not new in nursing, but their pop- ularity among nurses and other providers is grow- ing due to the clearly perceived value of the knowledge they generate. Genograms and ecomaps are beginning to make their way out of more ob- scure settings such as specialty genetics clinics and into mainstream home health, public health, and even acute care settings (Svarvardoittir, 2008).

In terms of family nursing assessment and inter- vention, it is logical to begin with the “who” of families before moving to the “how” or “why.” In determining the family structure, the nurse needs to identify the following:

■ The individuals who comprise the family ■ The relationships between them ■ The interactions between the family members ■ The interactions with other social systems

Family patterns of organization tend to be rela- tively stable over time, but they are modified gradu- ally throughout the family life cycle and often change radically when divorce, separation, or death occurs.

In today’s information age and global society, sev- eral ideas about the “best family” coexist simultane- ously. Different family types have their strengths and

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limitations, which directly or indirectly affect indi- viduals and family health. Many families still adhere to more customary forms and patterns, but many of today’s families fall into categories more clearly labeled nontraditional (Table 1-3). Nurses will con- front families structured differently from their own families of origin and will encounter family types that conflict with personal value systems. For nurses to work effectively with families, they must maintain open and inquiring minds.

Families in the past were more homogeneous than they are today. Whereas the past norm in predominately Caucasian families was a two- parent family (traditional nuclear family) living to- gether with their biological children, many other family forms are acknowledged and recognized today. It is important to note that the average per- son born today will experience many family forms during his or her lifetime. Figure 1-10 depicts the many familial forms that the average person can live through today. Nurses are not only experienc- ing this proliferation of variation in their own per- sonal lives but also with the patients with whom they work in health care settings (Kaakinen & Birenbaum, 2012).

Understanding family structure enables nurses assisting families to identify effective coping strategies for daily life disturbances, health care crises, wellness promotion, and disease preven- tion (Denham, 2005). In addition, nurses are cen- tral in advocating and developing social policies relevant to family health care needs. For example, taking political action to increase the availability of appropriate care for children could reduce the financial and emotional burden of many working and single-parent families when faced with pro- viding care for sick children. Similarly, caregiving responsibilities and health care costs for acutely and chronically ill family members place increas- ing demands on family members. Nurses well informed about different family structures can

Family Health Care Nursing: An Introduction 21

Family of origin

Single- parent family

Stepfamily Cohabi- tation

Commuter marriage

AdulthoodChildhood Developmental process

Single- parent family

Cohabi- tation

Stepfamily

Widow/

widower

Married/agingfamily

Spouse

biological/stepparent

Partner/parentC us

to di

al

pa re

nt

S po

us e/

pa re

nt

Pa rtn

er

Li ve

s in

Li ve

s in

Lives in

Single

Married

FIGURE 1-10 An individual’s potential family life experiences.

Married couple, no children

Husband, wife, children (may or may not be legally married)

Two postdivorce families with children as members of both

Nuclear family plus blood relatives

Husband, wife, and children of previous relationships

One parent and child(ren)

Group of men, women, and children

Unmarried man and woman sharing a household

Same-gender couple

One person in a household

Table 1-3 Variations of Family and Household Structures

Family Type Composition

Nuclear dyad

Nuclear

Binuclear

Extended

Blended

Single parent

Commune

Cohabitation (domestic partners)

Homosexual

Single person (adult)

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identify specific needs of unique families, provide appropriate clinical care to enhance family re- silience, and act as change agents to enact social policies that reduce family burdens.

Family Functions A functional perspective has to do with the ways families serve their members. One way to describe the functional aspect of family is to see the unit as made up of intimate, interactive, and interde- pendent persons who share some values, goals, resources, responsibilities, decisions, and commit- ment over time (Steinmetz, Clavan, & Stein, 1990). Family function relates to the larger purposes or roles of families in society at large. It is important to be clear that there is a distinction between the concepts of family function (the prescribed social and cultural obligations and roles of family in soci- ety) and family functioning (the processes of family life). Family functioning has been described as “the individual and cooperative processes used by devel- oping persons as to dynamically engage one an- other and their diverse environments over the life course” (Denham, 2003a, p. 277). Family function includes the ways a family reproduces offspring, in- teracts to socialize its young, cooperates to meet economic needs, and relates to the larger society. Nurses should ask about specific characteristics that factor into achieving family or societal goals, or both. Families’ functional processes such as social- ization, reproduction, economics, and health care provision are areas nurses can readily assess and address during health care encounters. Nursing interventions can enhance the family’s protective health function when teaching and counseling is tailored to explicit learning needs. Family cultural context and individual health literacy needs are closely related to functional needs of families. Nurses become therapeutic agents as they assist families to identify social supports and locate com- munity resources during times of family transitions and health crisis. Five specific family functions are worth deeper investigation here: reproductive, socialization, affective, economic, and health care.

Reproductive Functions of the Family The survival of a society is linked to patterns of re- production. Sexuality serves the purposes of pleas- ure and reproduction, but associated values differ from one society to another. Traditionally, the

family has been organized around the biological function of reproduction. Reproduction was viewed as a major concern for thousands of years when populating the earth was continually threat- ened by famine, disease, war, and other life uncer- tainties. Norms about sexual intercourse affect the fertility rate. Fertility rate is “the average number of children that would be born per woman if all women lived to the end of their childbearing years and bore children according to a given fertility rate at each age” (World Factbook, 2013). In general, global fertility rates are in decline, with the most pronounced decline being in industrialized coun- tries, especially Western Europe (World Factbook, 2013). Global concerns about overpopulation and environmental threats, as well as personal views of morality and financial well-being, have been rea- sons for limiting numbers of family births.

Since the 1980s, the reproductive function has become increasingly separated from the family (Kaakinen et al., 2010). As mores and norms change over time, it is not deemed “unacceptable” in many industrialized countries for birth to occur outside of marriage. Abstinence, various forms of contraception, tubal ligation, vasectomy, family planning, artificial insemination, and abortion have various degrees of social acceptance as means to control reproduction. Many aspects of reproduc- tion continue to be the subject of social and ethical controversy. Nurses working with families find themselves at the forefront of practical issues related to providing care in this complex context.

The ethical dilemmas surrounding abortion, for example, seem compounded by technological advances that affect reproduction and problems of infertility. Reproductive technologies are guided by few legal, ethical, or moral guidelines. Artificial insemination by husband or donor, in vitro fertil- ization, surrogate mothers, and artificial embry- onization, in which a woman other than the woman who will give birth to and raise the child donates an egg for fertilization, create financial and moral dilemmas. Although assistive reproductive tech- nologies can provide a biological link to the child, some families are choosing to adopt children. Many are wrangling over the issues implicit in cross-racial and cross-cultural adoptions. Reproductive tech- nologies and adoption are being considered by all family types to add children to the family unit. Religious, legal, moral, economic, and technologi- cal challenges will continue to cause debates in the

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years ahead about family control over reproduc- tion, such as gender selection of child.

Socialization Functions of the Family A major function for families is to raise and social- ize their children to fit into society. Families have great variability in the ways they address the phys- ical and emotional needs, moral values, and eco- nomic needs of children, and these patterns are influenced specifically by the role of parenting and somewhat by the larger society (Grusec, 2011). Children are born into families without knowledge of the values, language, norms, morals, communi- cation, or roles of the society in which they live. A major function of the family continues to be to so- cialize them about family life and ground them in the societal identity of which they are a part. The function of the family relative to socialization in- cludes protection, mutual reciprocity or interde- pendence between family members, control, guided learning, and group participation, and all these functions are assumed to be operative in all cultures (Grusec, 2011).

Although the family is not the only institution of society that participates in socialization of chil- dren, it is generally viewed as having primary re- sponsibility for this function. When children fail to meet societal standards, it is common to blame this on family deficits and parental inadequacies; how- ever, it is important to keep in mind that the issues are more complex than simple finger pointing.

Today, patterns of socialization require appro- priate developmental care that fosters dependence and leads to independence (Denham, 2005). Social- ization is the primary way children acquire the so- cial and psychological skills needed to take their place in the adult world. Parents combine social support and social control as they equip children to meet future life tasks. Parental figures interact in multiple roles such as friends, lovers, child care providers, housekeepers, financial providers, recre- ation specialists, and counselors. Children growing up within families learn the values and norms of their parents and extended families.

Another role of families in the socialization process is to guide children through various rites of passage. Rites of passage are ceremonies that an- nounce a change in status in the ways members are viewed. Examples include events such as a baptism, communion, circumcision, puberty ritual, gradua- tion, wedding, and death. These occasions signal

to others changes in role relationships and new ex- pectations. Understandings about families’ unique rites of passage can assist nurses working with diverse health care needs.

Affective Functions of the Family Affective function has to do with the ways family members relate to one another and those outside the immediate family boundaries. Healthy families are able to maintain a consistent level of involve- ment with one another, yet at the same time, not become too involved in each other’s lives (Peterson & Green, 2009). The healthiest families have em- pathetic interaction where family members care deeply about each other’s feeling and activities, and are emotionally invested in each other. Families with a strong affective function are the most effec- tive type of families (Peterson & Green, 2009). All families have boundaries that help to buffer stresses and pressure of systems outside the family on its members. Healthy families protect their bound- aries, but at the same time, give members room to negotiate their independence. Achieving this bal- ance is often difficult in our fast-paced culture. And it is particularly difficult in families with adoles- cents (Peterson & Green, 2009). Emotional in- volvement is a key to successful family functioning. Researchers have identified several characteristics of strong families. Among these are expressions of appreciation, spending time together, strong com- mitment to the family, good communication, and positive conflict resolution (Peterson & Green, 2009). When family members feel that they are supported and encouraged and that their personal interests are valued, family interaction becomes more effective.

Families provide a sense of belonging and iden- tity to their members. This identity often proves to be vitally important throughout the entire life cycle. Within the confines of families, members learn de- pendent roles that later serve to launch them into independent ones. Families serve as a place to learn about intimate relationships and establish the foun- dation for future personal interactions. Families provide the initial experience of self-awareness, which includes a sense of knowing one’s own gen- der, ethnicity, race, religion, and personal charac- teristics. Families help members become acquainted with who they are and experience themselves in relationships with others. Families provide the sub- stance for self-identity, as well as a foundation for

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other-identity. Within the confines of families, in- dividual members learn about love, care, nurtu- rance, dependence, and support of the dying.

Resilience implies an ability to rebound from stress and crisis, the capacity to be optimistic, solve problems, be resourceful, and develop caring sup- port systems. Although unique traits alter potential for emotional and psychological health, individuals exposed to resilient family environments tend to have greater potential to achieve normative devel- opmental patterns and positive sibling and parental relationships (Denham, 2005).

Research on parent-child interactions needs to consider the quantity and quality of time spent together, the kinds of activities engaged in, and pat- terns of interaction to understand member feelings toward each other. More needs to be known about relationships with nonresidential parents as well as families characterized by polyamory, families in which there is more than one loving sexual relation- ship at the same time with the consent and knowl- edge of all partners (Pallotta-Chiarolli, 2006). Variables such as the quality of couples’ relation- ships, the ways families’ conflicts are handled, whether abuse or violence has previously occurred in the households or members’ lives, frequency of children’s contact with nonresidential parents, shared custody arrangements, and emotional rela- tionships between parents and children appear to be important predictors of family affective functions.

Affective functions can best be understood by gathering information from all of the various mem- bers involved within a household; lack of access to all points of view within families should not prevent nurses from gaining knowledge from those to whom they have access. It is quite reasonable to in- quire about the perceptions and experiences of some individuals through key family informants, but nurses must always remember that more certain knowledge should come from the specific individu- als themselves, particularly as family members are known to have diverse viewpoints on issues that af- fect health and family life. Shared or discrepant views among family members have an important influence on the overall functioning of families’ management of illness (Knafl, Breitmayer, Gallo, & Zoeller, 1996 Knafl, Deatrick, & Gallo, 2008).

Economic Functions of the Family Families have an important function in keeping both local and national economies viable. Economic

conditions significantly affect families. When economies become turbulent so become families’ structures, functions, and processes. People make decisions about when to enter the labor force, when to marry, when to have children, and when to retire or come out of retirement based on economic fac- tors (Bianchi, Casper, & King, 2005). For a detailed discussion on family and economics, see Chapter 2.

Family income provides a substantial part of fam- ily economics, but an equally important aspect has to do with economic interactions and consumerism re- lated to household consumption and finance. Money management, housing decisions, consumer spending, insurance choices, retirement planning, and savings are some of the issues that affect family capacity to care for the economic needs of its members (Lamanna & Reidmann, 2011. These values and skills are passed down to children within the family structure. Financial vulnerability and bankruptcy have increased for middle-class families (Denham, 2005). The ability of the family to earn a sufficient income and to manage its finances wisely is a critical factor related to economic well-being.

In order to meet their own economic needs and maintain family life and health, family members take upon themselves a number of contributory roles for obtaining and utilizing the wages. Family nurses should explore the types of resources avail- able or lacking as families engage in providing health care functions to their members.

Health Care Functions of the Family Family members often serve as the primary health care providers to their families. Individuals regu- larly seek services from a variety of health care pro- fessionals, but it is within the family that health instructions are followed or ignored. Family mem- bers tend to be the primary caregivers and sources of support for individuals during health and illness. Families influence well-being, prevention, illness care, maintenance care associated with chronic ill- ness, and rehabilitative care. Family members often care for one another’s health conditions from the cradle to the grave. Families can become particu- larly vulnerable when they encounter health threats, and family-focused nurses are in a position where they can provide education, counseling, and assistance with locating resources. Family-focused care implies that when a single individual is the tar- get of care, the entire family is still viewed as the unit of care (Denham, 2003a).

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Health care functions of the family include many aspects of family life. Family members have differ- ent ideas about health and illness, and often these ideas are not discussed within families until prob- lems arise. Availability and cost of health care in- surance is a concern for many families, but many families lack clarity about what is and is not covered until they encounter a problem. Lifestyle behav- iors, such as healthy diet, regular exercise, and al- cohol and tobacco use, are areas that family members may not associate with health and illness outcomes. Risk reduction, health maintenance, re- habilitation, and caregiving are areas where families often need information and assistance. Family members spend far more time taking care of health issues of family members than professionals do.

Family Processes Family process is the ongoing interaction between family members through which they accomplish their instrumental and expressive tasks (Denham, 2005). Family process indicators describe the inter- actions between members of a family, including their relationships, communication patterns, time spent together, and satisfaction with family life (World Family Map, 2013). In part, family process makes every family unique within its own particular culture. Families with similar structures and func- tions may interact differently. Family process, at least in the short term, appears to have a greater ef- fect on the family’s health status than family struc- ture and function, and in turn, processes within families are more affected by alterations in health status. Family process certainly appears to have the greatest implications for nursing actions. For ex- ample, for the chronically ill, an important deter- minant for successful rehabilitation is the ability to assume one’s familial roles. For rehabilitation to occur, family members have to communicate effectively, make decisions about atypical situa- tions, and use a variety of coping strategies. The usual familial power structure may be threatened or need to change to address unique individual needs. Ultimately, the success or failure of the adaptation processes will affect individual and family well-being.

Alterations in family processes most likely occur when the family faces a transition brought about by developmental changes, adding or subtracting family members, an illness or accident, or other potential

crisis situations, such as natural disasters, wars, or personal crises. The family’s current modes of op- eration may become ineffective, and members are confronted with learning new ways of coping with change. For example, when coping with the stress of a chronic illness, families experience alterations in role performance and in power. When individ- uals are unable to perform usual roles, other mem- bers are expected to assume them. A shift in family roles may result in the loss of individual power. During times of change, family nurses can assist family members to communicate, make decisions, identify ways to cope with multiple stressors, re- duce role strain, and locate needed resources.

Family communication patterns, member inter- actions, and interaction with social networks are sev- eral areas related to family processes that nurses need to assess systematically. Nursing interventions that promote resiliency in family processes vary with the degree of strain faced by the family. Families have complex needs related to adaptation, goal at- tainment, integration, pattern, and tension manage- ment. When family processes are ineffective or disrupted, the families and their members may be at risk for problems pertinent to health outcomes, and the family itself could be in danger of disintegrating.

Following is a discussion of a few family processes that nurses can influence through their relationships with families in caregiving situations. The family processes covered here include family coping, family roles, family communication, family decision mak- ing, and family rituals and routines.

Family Coping Every family has its own repertoire of coping strategies, which may or may not be adequate in times of stress, such as when a family member ex- periences an altered health event such as the diag- nosis of diabetes, a stroke, or a fractured leg in a biking accident. Coping consists of “constantly changing cognitive and behavioral efforts to man- age specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person” (Lazarus & Folkman, 1984, p. 141). Families with support can withstand and rebound from difficult stressors or crises (Walsh, 2011b), which is referred to as family resilience. “Family re- silience is the successful coping of family members under adversity that enables them to flourish with warmth, support, and cohesion” (Black & Lobo, 2008, p. 33).

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Not all families have the same ability to cope be- cause of multiple reasons. There is no universal list of key effective factors that contribute to family re- siliency, but a review of research and literature by Black and Lobo (2008) found the following simi- larities across studies for those families that cope well: a positive outlook, spirituality, family member accord, flexibility, communication, financial man- agement, time together, mutual recreational inter- ests, routines and rituals, and social support (Black & Lobo, 2008). According to Walsh (2011b) some key processes in family resiliency include belief sys- tem, organizational patterns, and family communi- cation. The family’s belief system involves making meaning of adversity, maintaining a positive out- look, and being able to transcend adversity through a spiritual/faith system (Walsh, 2011b). The fami- lies’ organization patterns, which speak to their flexibility, connectedness, and social and economic resources, help the family maintain resilience. Finally, families who communicate with clarity, allow open emotional expression, and have a col- laborative problem-solving approach facilitate fam- ily resiliency (Walsh, 2011b).

Nurses have the ability to support families in times of stress and crisis through empowering processes that work well and are familiar to the family. Using a strengths-based approach, family nurses help families to adjust and adapt to stressors (Black & Lobo, 2008; Walsh, 2011c). Nurses can help families in establishing priorities and respond- ing to everyday needs when a health event occurs that threatens family stability. For example, when an unexpected death in the family occurs, family members are called on to make multiple decisions. At the same time, they may not be able to remem- ber phone numbers, think of whom to call in what order, decide who should pick up the kids, deter- mine which funeral home to use, or decide how or what to tell children or aging parents. Helping families to work through steps and set priorities during this situation is an important aspect of fam- ily nursing.

Even families who function at optimal levels may experience difficulties when stressful events pile up. Even families that cope well may still feel stressed (Black & Lobo, 2008). Today’s families encounter many challenges that leave them vulner- able to a myriad of stressors. Vulnerability can re- sult from poverty, illness, abuse, and violence. Coping capacities are enhanced whenever families

demonstrate resilience or the capacity to survive in the midst of struggle, adversity, and long-term con- flict. Families who recover from crisis tend to be more cohesive, value unique member attributes, support one another without criticism, and focus on strengths (Black & Lobo, 2008).

Family Roles Understanding family roles is crucial in family nursing as it is one area in which nurses can help families to adapt, negotiate, give up expectations, or find additional resources to help decrease family stress during times when a family member is ill. Within the family, regardless of structure, each family position has a number of attached roles, and each role is accompanied by expectations. After a review of the family literature, Nye (1976) identi- fied eight roles associated with the position of spouse/partner:

■ Provider ■ Housekeeper ■ Child care ■ Socialization ■ Sexual ■ Therapeutic ■ Recreational ■ Kinship

With the rates of divorce and cohabitation in North America, traditional roles such as provider and child care role are stressed and unfold differ- ently. In addition, other roles are added relative to relationship, such as father who lives apart from children, stepparent, and/or half-sibling.

Traditionally, the provider role has been as- signed to husbands, whereas wives assumed the housekeeper, child care, and other caregiving roles. With societal changes and variations in family structure, however, the traditional enactment of these roles is not viable for some families anymore (Gaunt, 2013). In two-parent heterosexual families, the roles are still primarily organized by gender, with men as breadwinners and women as primary caregivers (Scott & Braun, 2009). Other family roles form based on generation or location in the family (Haddock, Zimmerman, & Lyness, 2005), such as, for example, middle child, mother, father, stepsister, niece, and grandfather. Attitudes have changed somewhat in regard to rigid gender role enactment (who does what), but the research shows that, in reality, little change has occurred, and most

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families remain gender based (Haddock et al., 2005; Scott & Braun, 2009).

What has changed relative to family roles is the number of mothers who work outside of the home and the role of the father. The rate of mothers with infants under 1 year old working outside of the home is 55.8% (Bureau of Labor Statistics, 2011). Even though more women work outside of the home and men are participating and doing more in the home and with child care in the family than ever before, the responsibility for child care still re- mains largely with women (Kaakinen et al., 2010). The role of the father has changed, but the degree of change is unsure. A 2011 Pew Research Center report indicates that one in four children under the age of 18 years lives apart from their father (Livingston & Parker, 2011). Many fathers who live with their children are active in their day-to- day activities. Fathers who live apart from their children are often involved in e-mail and phone conversations and visitation in varying amounts of time. But 27% of the fathers who do not live with their children indicate that they have not been in communication with their children in the last year. In general, the Pew report found no consensus on whether or not today’s fathers are more involved in the family life of their children than previous generations of fathers (Livingston & Parker, 2011).

In every household, members have to decide the ways work and responsibilities will be divided and shared. Roles are negotiated, assigned, delegated, or assumed. Division of labor within the family household occurs as various members assume roles, and as families change over time and over the fam- ily life cycle. For example, family members need to reconfigure role allocation after the birth or death of family members.

Provider role: The provider role has undergone significant change in the past few decades. Whereas American men were once viewed as the sole pri- mary family breadwinner, this has changed signifi- cantly. In today’s world, many families need more than one income to meet basic needs. Work con- ditions have become increasingly stressful for men and women, and external work obligations impinge on members’ abilities to meet familial role obliga- tions. For example, working mothers in Canada were found to rely on processed and fast conven- ience foods in the majority of meal preparations, thus increasing the risk of poor health outcomes for

the family members, such as obesity (Slater, Sevenhuysen, Edginton, & O’Neil, 2012).

Housekeeper and child care roles: Today, many women experience significant role strain in balancing provider and other familial roles. Women who work continue to be responsible for most housekeeping and child care responsibilities (Haddock et al., 2005). Women who work outside the home still perform 80% of the child care and household duties (Walsh, 2011a). In a survey by Hewlett and Luce (2006), 77% of women and 66% of men who worked over 60 hours a week said they were unable to maintain their household, 66% of the sample reported they did not get sufficient sleep, and half reported not getting enough exer- cise. Although husbands’ roles in child care are in- creasing, their focus is often on playing with the children rather than meeting basic needs. Women still are primary in meeting health care needs of all family members, including children and men.

Sick role: Individuals learn health and illness be- haviors in their family of origin. Health behaviors are related to the primary prevention of disease, and include health promotion activities to reduce sus- ceptibility to disease and actions to reduce the effects of chronic disease. Kasl and Cobb (1966) identified three types of health behaviors in families:

■ Health behavior is any activity undertaken by a person believing himself to be healthy for the purpose of preventing disease or detecting it at an asymptomatic stage.

■ Illness behavior is any activity, undertaken by a person who feels ill, to define the state of his health and to discover a suitable remedy.

■ Sick-role behavior is any activity undertaken for the purpose of getting well, by those who consider themselves ill.

Once a family member becomes ill, she demon- strates various illness behaviors or enacts the “sick role.” Parsons (1951) defines four characteristics of a person who is sick:

■ While sick, the person is temporarily exempt from carrying out normal social and family roles. The more severe the illness, the freer one is from role obligations.

■ In general, the sick person is not held responsible for being ill.

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■ The sick person is expected to take actions to get well, and therefore has an obligation to “get well.”

■ The sick person is expected to seek compe- tent professional medical care and to comply with medical advice on how to “get well.”

Voluminous research has been conducted on the theoretical concepts of the sick role. Some criti- cisms of the Parsons perspective the sick role are as follows: (1) some individuals reject the sick role; (2) some individuals are blamed for their illness, such as alcoholics or individuals with AIDS; and (3) sometimes independence is encouraged in persons who have a chronic illness as a way to “get well.”

Regardless of the theoretical debates about the sick role, individuals in families experience acute and chronic illness. Each family, depending on its family processes, defines the sick role differently. Most “sick” people require some level of care; someone needs to assume the family caregiver role. The care- giving role may be as simple as a stop at the store on the way home to buy chicken soup or pick up med- icines, or as involved as providing around-the-clock care for someone. The female individuals in our so- ciety still provide the majority of the care required when family members become sick or injured.

Role strain, conflict, and overload: Family roles are affected, some more than others, when a family member becomes ill. Usually the women in the family add the role of family caregiver to their other roles. Nurses have a crucial role in helping families adjust to illness by discussing and exploring role strain, role conflict, and role overload. Nurses can facilitate family adaptation by helping to problem-solve role negotiations and helping fam- ilies access outside resources.

Lack of competence in role performance may be a result of role strain. Some researchers have found that sources of role strain are cultural and interactional. Interactional sources of role strain are related to difficulties in the delineation and en- actment of familial roles. Heiss (1981) identifies five sources of difficulties in the interaction process that place strain on a family system:

■ Inability to define the situation ■ Lack of role knowledge ■ Lack of role consensus ■ Role conflict ■ Role overload

The inability to define the situation creates am- biguity about what one should do in a given sce- nario. Continual changes in family structures and gender roles means that members increasingly en- counter situations in which guidelines for action are unclear. Single parents, stepparents, nonresi- dent fathers, and cohabitating partners deal daily with situations for which there are no norms. What right does a stepparent have to discipline the new spouse’s child? Is a nonresident father expected to teach his child about AIDS? What name or names go on the mailbox of cohabitating partners? Who can sign for consent when divorced parents share custody?

Regardless of whether the issues are substantive, they present daily challenges to the people in- volved. Some choose to withdraw from the situa- tion, and others choose to redefine the situation when they are uncertain how to act. For instance, a blended family might want to operate in the same way as a traditional family but may experience con- flict when thinking about which members to in- clude in family decision making. When a solution cannot be found, family members suffer the conse- quences of role strain.

Role strain sometimes results when family members lack role knowledge, or they have no basis for choosing between several roles that might seem appropriate. In America, most people are not taught how to be parents, and much learning is observational and experiential. Social- ization related to caregiving of a chronically ill family member seldom occurs, and many individ- uals are unfamiliar with and unprepared to as- sume the roles necessary for providing care. When an individual is learning how to be a parent or a caregiver, role training may be required. Knowledge may be acquired by peer observation, trial and error, or explicit instruction. Parents may have limited opportunities to observe peers, and other family members may not have the knowledge necessary to help. Thus, the family may need to seek external resources or obtain needed information using other means such as child care classes, self-help groups, or instruction from health professionals. When individuals are unable to figure out their roles in a situation, it limits their problem-solving abilities.

Family members may lack role consensus, or be unable to agree about the expectations attached to a role. One family role that is often the source

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of family disagreement is the housekeeping role, especially for dual-career couples. Men who have been socialized into more traditional male roles are less inclined to accept responsibility for house- hold tasks readily and may limit the amount of time they are willing to spend on these activities. When active participation does not meet the wife’s expectations, she tends to assume responsi- bility for the greater number of household tasks. If she has been socialized into thinking that women are accountable for traditional housekeep- ing roles, she may feel guilty or neglectful if she asks for help. Lack of agreement about the role sometimes results in familial discord and impedes satisfaction with the partner. Negotiation is likely the most effective way to reach consensus about things that can be done.

Role conflict occurs when expectations about familial roles are incompatible. For example, the therapeutic role might involve becoming a care- giver to an elderly parent, but expectations of this new role may be incompatible with that of provider, housekeeper, sexual partner, and child care provider. Does one go to the child’s baseball game or to the doctor with the elderly parent? Role conflict may occur when roles present con- flicting demands. Individuals and families often have to set priorities. Demands of caregiver and provider roles may be conflicting and may conflict with other therapeutic familial tasks. The care- giver may withdraw from activities that, in the short term, seem superfluous, but in the long term are sources of much-needed energy. Family nurses are likely to encounter members facing many strains because of role conflict, and may need to assist by providing information and sug- gesting ways the family could negotiate roles to discover meaningful solutions.

A source of role strain closely related to role conflict is role overload. In role overload, the in- dividual lacks resources, time, and energy to meet role demands. As with role conflict, the first option usually considered is to withdraw from one of the roles. Maintaining a balance between energy- enhancing and energy-depleting roles reduces role strain. An alternative to withdrawing from a role might be to seek time away from some role re- sponsibilities. For example, a friend of the family member could relieve the primary caregiver for several hours. Nurses could arrange for a home- health aide to assist with personal care hygiene.

The dependent family member can be temporarily cared for in a residential facility while the other family members go on a vacation, which is called respite care.

It is the role of the nurse to help families who experience role strain, conflict, and overload. Using anticipatory guidance, nurses work closely with families to discuss and define the family flow of en- ergy and resources when confronted with a family caregiving situation. See Chapter 4 for ways to work with families who experience stress related to caregiving and caregiving roles.

Family Communication Communication is an ongoing, complex, chang- ing activity and is the means through which people create, share, and regulate meaning in a transactional process to make sense of their world (Dance, 1967). In all families, communication is continuous in that it defines their present reality and constructs family relationships (Dance, 1967). It is through communication that families find ways to adapt to changes as they seek family sta- bility. Families that are highly adaptive change more easily in response to demands. Families with low adaptability have a fixed or more rigid style of interacting (Olson & Gorall, 2005). “Family adaptability is manifested in how assertive family members are with each other, the amount of con- trol in the family, family discipline practices, negotiation, how rigid family roles are adhered to, and the nature and enforcement of rules in the family” (Segrin & Flora, 2011, p. 17).

Family communication affects family physical and mental health. Most programs and interven- tion strategies for improving family communica- tion are beyond the role and experience of nurses with undergraduate education. The role of the nurse is to facilitate family communication at times when families are stressed by changes that occur with its members, such as birth of an infant, growth and development issues of children, when family members become ill, or the death of family mem- bers. It is the role of the nurse to assist family com- munication to achieve healthful outcomes.

Family Decision Making Communication and power are family processes that influence decision making. Family decision making is not an individual effort but a joint one. Most health care decisions should be made from a

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family perspective. Each decision has at least five features: the person raising the issue, what is being said about the issue, supporting action to what is being said, the importance of what is being said, and the responses of the individuals (Friedman, Bowden, & Jones, 2003).

Decision making provides opportunity for vari- ous family members to make a contribution to the process, support one another, and jointly set and strive to achieve goals. Disagreements within a family are natural, because members often have dif- ferent points of view. It is important for members to share their various viewpoints with one another. Problem solving is part of the decision-making process, and frequently means that differences in opinion and emotions need consideration.

Family communication processes influence decision-making outcomes. In the Pew Research Center (2006) report on family communication, 46% of the 3,014 subjects indicated that they turned to their families for help and advice when they had problems. Keep in mind that in family conflicts, the expression of anger is not necessarily destructive, but contempt, belligerence, and defen- siveness are counterproductive (Gottman, Coan, Carrere, & Swanson, 1998). Nurses working with families can facilitate family communication skills to help families find an effective way for resolving differences and making decisions.

Families want to be involved in varying degrees with health care decisions. Families are often asked to help make end-of-life decisions, not to resuscitate a loved one or to withdraw/withhold life-sustaining therapies. See Chapter 4 for infor- mation on shared decision making.

Family Rituals and Routines Family rituals and routines have been studied for decades, beginning with Bossard and Boll (1950). Rituals are associated with formal celebrations, tra- ditions, and religious observances with symbolic meaning, such as bar mitzvahs, weddings, funerals. Routines are patterned behaviors or interactions that closely link to daily or regular activities, such as bedtime procedure, mealtimes, greetings, and treatment of guests (Buchbinder, Longhofer, & McCue, 2009). Families have unique rituals and routines that provide organization and give mean- ing to family life. When family rituals and routines are disrupted by illness, the family system as a whole is affected; therefore, it can affect the health

of each family member and the family as a whole (Buchbinder et al., 2009). The importance and value of rituals in everyday life has been clearly ex- plored in anthropological and sociological litera- ture, but the significance of rituals is largely ignored by nurses (Denham, 2003b).

Assessing rituals and routines related to specific health or illness needs provides a basis to envision distinct family interventions and to devise specific plans for health promotion and disease manage- ment, especially when adherence to medical regi- mens is critical or caregiving demands are burdensome to the families (Fiese, 2007). For example, when a family member develops type 2 diabetes, the whole family may adapt its cooking, eating, and shopping habits to accommodate the needs of this family member (Denham, Manoogian, & Schuster, 2007). It enhances com- pliance with chronic illness treatment when the family incorporates illness regimens into the basic family tasks and practices (Buchbinder et al., 2009).

SUMMARY

This chapter provides an introduction and broad overview to family health care nursing. The follow- ing major concepts were discussed in this chapter:

■ Family health care nursing is an art and a science that has evolved as a way of thinking about and working with families.

■ Family nursing is a scientific discipline based in theory.

■ Health and illness are family events. ■ The term family is defined in many ways, but

the most salient definition is, The family is who the members say it is.

■ An individual’s health (on the wellness- to-illness continuum) affects the entire family’s functioning, and in turn, the family’s ability to function affects each individual member’s health.

■ Family health care nursing knowledge and skills are important for nurses who practice in generalized and in specialized settings.

■ The structure, function, and processes of families have changed, but the family as a unit of analysis and service continues to survive over time.

■ Nurses should intervene in ways that pro- mote health and wellness, as well as prevent

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illness risks, treat disease conditions, and manage rehabilitative care needs.

■ Knowledge about each family’s structure, function, and process informs the nurse in how to optimize nursing care in families and provide individualized nursing care, tailored to the uniqueness of every family system.

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33

Family Demography Continuity and Change in North American Families

c h a p t e r 2

Lynne M. Casper, PhD

Sandra M. Florian, MA, PhD Candidate

Peter D. Brandon, PhD

C r i t i c a l C o n c e p t s

■ Economic, social, and cultural changes have increased family diversity in North America. More families are maintained by single mothers, single fathers, cohabitating couples, and grandparents than in the past.

■ Increases in women’s labor force participation, especially among mothers, have reduced the amount of nonwork time that families have to attend to health care needs.

■ North Americans are more likely to live alone than they were a few decades ago. Thus, people are less likely to have family members living with them who can assist them when they become ill or injured.

■ The Great Recession has increased the likelihood that young adults will remain in or return to their parents’ homes after graduating from school. Many of them cannot find a stable job that pays enough for them to live on their own. In the United States, many young adults do not have health insurance and, thus, do not seek health care regularly.

■ More North Americans are immigrants than was the case a few decades ago. Family nurses provide care for an in- creasingly ethnically, culturally, and linguistically diverse population.

■ Single-mother families are particularly vulnerable. They are more likely to live in poverty than are other families. These mothers are usually the sole wage earners and care providers in their families. Thus, these families are more likely than other families both to be monetarily poor and to face stringent time constraints.

■ Single-father families have been increasing in recent decades and fathers are spending more time caring for their children. Nurses will be increasingly likely to encounter fathers who bring their children in for checkups or medical treatments.

■ Cohabitation among opposite- and same-sex couples continues to rise in North America. In the United States, because cohabitating relationships are not legally sanctioned in many states and localities, partners may not have the right to make health care decisions on behalf of each other or for the other partner’s children.

(continued)

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If there is one “mantra” about family life in the last half century, it is that the family has undergone tremendous change. No other institution elicits as contentious debate as the North American family. Many argue that the movement away from marriage and traditional gender roles has seriously degraded family life. Others view family life as amazingly diverse, resilient, and adaptive to new circumstances (Cherlin, 2009; Popenoe, 1993; Stacey, 1993).

Any assessment of the general “health” of family life in North America, and the health and well-being of family members, especially children, requires a look at what is known about demographic and so- cioeconomic trends that affect families. A pragmatic approach to family nursing requires an understand- ing of the broader changes in family within the pop- ulation. The latter half of the 20th century was characterized by tumultuous change in the econ- omy, civil rights, and sexual freedom and by dra- matic improvements in health and longevity. Marriage and family life felt the reverberations of these societal changes.

In the first decades of the 21st century, as North Americans reassess where they have come from and where they are going, one thing stands out—rhetoric about the dramatically changing family may be a step behind the reality. Recent trends suggest a quieting of changes in the family in Canada, as well as the United States, or at least of the pace of change. Little change occurred in the proportions of two-parent or single-parent families since the mid-1990s (U.S. Census Bureau, 2011d). After a significant increase in the proportion of children living with unmarried parents, the living arrangements of children

stabilized, as did the living arrangements of young adults and elderly persons. The divorce rate in- creased substantially in the mid-1960s and 1970s, reached its peak in 1980, slightly declined during the 1990s, and has remained relatively constant since then. In the United States, between 43% and 46% of marriages contracted today are expected to end in di- vorce (Schoen & Canudas-Romo, 2006). The rapid growth in cohabitation among unmarried adults has also slowed. In Canada, divorce rates also increased during the 1970s and 1980s, peaked slightly later in 1987, but have slightly declined since then. In 2008, 41% of marriages were expected to end in divorce within the first 30 years (Statistics Canada, 2012b).

Yet, family life is still evolving. Young adults have often postponed marriage and children to complete higher education before attempting to enter labor markets that have become inhospitable to poorly educated workers. Accompanying this delay in marriage was the continued increase in births to unmarried women. By 2010, 41% of all births in the United States were to unmarried women (Martin et al., 2012).

Within marriage or marriage-like relationships, the appropriate roles for each partner are shifting as North American societies accept and value more equal roles for men and women. The widening role of fathers has become a major agent of change in the family. More father-only families exist than in the past, and after divorce, fathers are more likely to share custody of children with the mother. Within two-parent families, fathers are also more likely to be involved in the children’s care than in the past (Hernandez & Brandon, 2002). In addition, the

34 Foundations in Family Health Care Nursing

C r i t i c a l C o n c e p t s ( c o n t . )

■ Couples who are having trouble conceiving are increasingly turning to the medical profession for help. Births resulting from assisted reproductive technologies (ARTs) are on the rise in North America. The ART process is expensive, time consuming, and often increases health risks for the women and children involved.

■ Many children in North America are adopted. These children need time to adjust to their new circumstances and are more likely than other children to have special health care needs.

■ Stepfamilies are common among North American families. Legal arrangements in these families can be complicated; it is not always clear who has the right to make health care decisions for children in these families.

■ Many children are raised by or receive regular care from their grandparents. These grandparents may or may not have legal responsibility for their grandchildren, but may seek medical care for them.

■ The aging of the population, as well as the impending retirement of the baby-boom generation, presents significant challenges for both informal caregivers and the health care system. The need for nurses who specialize in caring for elderly persons will continue to increase.

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number of same-sex couples has been increasing, and a larger proportion of them are now raising chil- dren. Family roles in same-sex couples are more likely to be negotiated than in opposite-sex families.

Whether the slowing, and in some cases, cessa- tion, of change in family living arrangements is a temporary lull or part of a new, more sustained equilibrium will only be revealed in the next decades of the 21st century. New norms may be emerging about the desirability of marriage, the optimal timing of children, and the involvement of fathers in child rearing and mothers in bread- winning. Understanding the evolution of North American families and the implications these changes have for family nursing requires taking the pulse of contemporary family life.

This chapter examines changes and variations in North American families in order to understand

what these changes portend for family health care nursing during the first half of this century. This chapter draws on information pertaining to fam- ily demography from a variety of data sources (Box 2-1). The reader should note that family nursing is not the major focus of this chapter. The subject matter of the chapter is structured to provide family nurses with background on changes in the North American family so that they can understand their patient populations. The chapter does briefly touch upon the impli- cations of these demographic patterns for prac- ticing family nursing.

Where possible, statistics have been reported for both the United States and Canada, but compara- ble data for Canada were not always readily acces- sible for the topics covered in this chapter. Readers should note that data are not always collected in the

Family Demography: Continuity and Change in North American Families 35

BOX 2-1 Sources of Information on Demography and Public Health

Many of the statistics discussed in this chapter draw on information from the Current Population Surveys (CPS) collected by the U.S. Census Bureau. This is a continuous survey of about 60,000 households, se- lected at random to be representative of the national population. Each household is interviewed monthly for two 4-month periods. During February through April of each year, the CPS collects additional demographic and economic data, including data on health insurance coverage, from each household. This Annual Demo- graphic Supplement is the most frequently used source of data on demographic and economic trends in the United States and is the data source for the majority of statistics presented in this chapter regarding changes in the family.

For estimates for small areas or subgroups of the pop- ulation, demographers often used data from the “long form” of the decennial census, which collected data from one-sixth of all households. The census collects a range of economic and demographic information, including in- comes and occupations, housing, disability status, and grandparent responsibility for children. The census cannot match the detail found in more specialized surveys. For example, only four short questions measure disability for children; surveys designed for precise and complete estimates of disabilities will usually have dozens of such questions. Since 2004, the American Community Survey replaced the sample data from the census and now provides a more continuous flow of estimates for states, cities, counties, and even towns and rural areas, for which estimates were made only once a decade.

Moreover, several large health-related surveys are conducted by the National Center for Health Statistics. The National Health Interview Survey (NHIS) is a large, continuous survey of about 43,000 households per year, covering the civilian, noninstitutionalized population of the United States. The NHIS is the major source of infor- mation on health status and disability, health-related behaviors, and health care utilization for all age groups. The National Health and Nutrition Examination Survey (NHANES) includes physical examinations, mental health questionnaires, dietary data, analyses of urine and blood, and immunization status from a random sample of Americans (about 10,000 in each 2-year cycle). NHANES also collects some basic demographic and income data. It is the major source of information on trends in obesity, cholesterol status, and a host of other conditions in the national population, and in particular age groups and racial/ethnic groups. The National Survey of Family Growth (NSFG) is the primary source of information on marriage and divorce trends, pregnancy, contraceptive use, and fertility behaviors, and the ways in which they vary among different groups and over time. Birth and death certificates, sent by hospitals and funeral homes to state offices of vital events registration, provide the raw material for calculating fertility and mortality rates and life expectancy. The data are collected from the states and analyzed by the National Center for Health Statistics.

In Canada, the National Population Health Survey has interviewed a panel of respondents every 2 years since 1994 to track changes in health-related behaviors, risk factors, and health outcomes.

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same year and that some family indicators are defined and measured differently across the two countries.

A CHANGING ECONOMY AND SOCIETY

Consider the life of a North American young woman reaching adulthood in the 1950s or early 1960s. Such a woman was likely to marry straight out of high school or to take a clerical or retail sales job until she married. She would have moved out of her parents’ home only after she married to form a new household with her husband. This young woman was likely to marry by about age 20 in the United States (U.S. Census Bureau, 2008), age 22 in Canada, and begin a family soon thereafter. If she were working when she became pregnant, she would probably have quit her job and stayed home to care for her children and husband while her hus- band had a steady job that paid enough to support the entire family. Thus, usually someone was at home who had the time to care for the health needs of family members, to schedule routine checkups with doctors and dentists, and to take family mem- bers to these appointments.

Fast-forward to the first decades of the 21st cen- tury. A young woman reaching adulthood in the first decades of the 21st century is not likely to marry before her 26th birthday. She will probably attend higher education and is likely to live by her- self, with a boyfriend, or with roommates before marrying. She may move in and out of her parents’ house several times before she gets married. Like her counterpart reaching adulthood in the 1950s, she is likely to marry and have at least one child, but the sequence of those events may well be re- versed. She probably will not drop out of the labor force after she has children, although she may cur- tail the number of hours she is employed. She is much more likely to divorce, and possibly even to remarry, compared with a young woman in the 1950s or 1960s. Because she is more likely to be a single mother and to be working outside of the home, she is also not as likely to have the time nec- essary to devote to caring for the health of family members.

A dramatic change in women’s participation in the labor market occurred after 1970, as mothers with young children began entering the labor force

in greater numbers. Historically, unmarried mothers (either never married or formerly married) of young children had higher labor force participation rates than married mothers. These women often were the only earners in their families. One notable change has been the increase in the combination of paid work and mothering among married mothers. In 1960, for example, in the United States, only 19% of married mothers with children younger than age 6 were in the labor force. By 2011, the proportion increased to 62% (U.S. Census Bureau, 2011e). In Canada, 28% of women with children under the age of 3 were employed in 1976 com- pared with 64% in 2009. Among mothers with children under the age of 16 living at home, the proportion is even higher at 73% (Statistics Canada, 2010). Another truly remarkable change has been the increase in the labor force participa- tion of single mothers from 44% to 77% between 1980 and 2011 (U.S. Census Bureau, 2011j). In Canada, the proportion of single mothers who were employed in 1976 was 28% and increased to 69% in 2009 (Statistics Canada, 2010). What does this trend imply for family nursing? The majority of North American families with young children in the mid-20th century had mothers who were home full-time to care for the health needs of family members, whereas at the beginning of the 21st century such families were in the minority.

Changes in the Economy Economic conditions have an influence on young people’s decisions about when to enter the labor force, when to marry, and when to have children (and how many children to have). After World War II, the United States and Canada enjoyed an eco- nomic boom characterized by rapid economic growth, full employment, rising productivity, higher wages, low inflation, and increasing earn- ings. A man with a high-school education in the 1950s and 1960s could secure a job that paid enough to allow him to purchase a house, support a family on one income, and join the swelling ranks of the middle class.

The economic realities of the 1970s and 1980s were quite different. The two decades after the oil crisis, which began in 1973, were decades of economic change and uncertainty marked by a shift away from manufacturing and toward serv- ices, stagnating or declining wages (especially for

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Family Demography: Continuity and Change in North American Families 37

less-educated workers), high inflation, and a slowdown in productivity growth. The 1990s were just as remarkable for the turnaround: sus- tained prosperity, low unemployment, and eco- nomic growth that seems to have reached many in the poorest segments of society (Farley, 1996; Levy, 1998). The Great Recession, which began in 2008, reversed this trend, and many men and women joined the ranks of the unemployed.

When the economy is on such a roller coaster, family life often takes a similar ride. Marriage oc- curred early and was nearly universal in the decades after World War II; mothers remained in the home to rear children as the baby-boom generation was born and nurtured. When baby boomers hit work- ing age in the 1970s, the economy was not as hos- pitable as it had been for their parents. They postponed marriage, delayed having children, and found it difficult to establish themselves in the labor market.

Many of the baby boomers’ own children began reaching working age in the 1990s and 2000s, when individuals’ economic fortunes were increasingly dependent on their educational attainment. Those who attended higher education were much more likely to become self-sufficient and to live inde- pendently from their parents (Rosenfeld, 2007). High-school graduates who did not go to higher education discovered that jobs with high pay and benefits were in relatively short supply. In the United States, a high-school graduate in full-time work earned about 25% (allowing for inflation) less than a comparable new worker would have earned 20 years earlier (Farley, 1996). The increasing rel- ative benefits of further education encouraged more young men and women to delay marriage and attend higher education.

Partly because of these changes in the econ- omy, both men and women are remaining single longer and are more likely to leave home to pur- sue higher education, to live with a partner, and to launch a career before taking on the responsi- bility of a family of their own. The traditional gender-based organization of home life (in which mothers have primary responsibility for care of the home and children and fathers provide finan- cial support) has not disappeared, but young women today can expect to be employed while raising children, and young men are more likely to share in some child-rearing and household tasks. Thus, in the first decades of this century,

men are more likely to play a role in looking after the health of family members than they were in previous decades.

Before World War II, most men worked nearly to the end of their lives. Retirement was a privi- lege for the wealthy or the fortunate workers whose companies provided pensions. Currently, with increases in life expectancy and healthier lives, the passage of the Social Security Acts in 1936 and 1938 in the United States, and the in- stitution of provincial (in the 1920s) and federal (since 1952) pensions in Canada, most workers can look forward to at least a modest guaranteed income for themselves and their spouses and minor children. Social Security benefits constitute more than half of the household income for two- thirds of Americans older than 65. The increased availability of public pensions made possible a growing period of retirement for most workers, a steady decrease in poverty rates for older people, and an increase in the proportion of older people maintaining their own households separately from their adult children.

Changing Family Norms In 1950, in North America, there was one domi- nant and socially acceptable way for adults to live their lives. Those who deviated could expect to be censured and stigmatized. The “ideal” family was composed of a homemaker-wife, a breadwinner- father, and two or more children. Americans shared a common image of what a family should look like and how mothers, fathers, and children should be- have. These shared values reinforced the impor- tance of the family and the institution of marriage (McLanahan & Casper, 1995). This vision of fam- ily life showed amazing staying power, even as its economic underpinnings were eroding. For this 1950s-style family to exist, North Americans had to support distinct gender roles, and the economy had to be vibrant enough for an average man to support a family financially on his own.

Government policies and business practices per- petuated this family type by reserving the best jobs for men and discriminating against working women when they married or had a baby. Begin- ning in the 1960s, though, women and people from minority backgrounds gained legal protections in the workplace and discriminatory practices began to recede.

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A transformation in attitudes toward family be- haviors also took place. People became more ac- cepting of divorce, cohabitation, and sex outside marriage; less sure about the universality and per- manence of marriage; and more tolerant of blurred gender roles and of mothers working outside the home (Bianchi, Raley, & Casper, 2012; Cherlin, 2009). Society became more open-minded about a variety of living arrangements, family configura- tions, and lifestyles.

Although the transformation of many of these attitudes occurred throughout the 20th century, the pace of change accelerated in the 1960s and 1970s. These years brought many political, social, and medical upheavals affecting gender issues and views of the family. The women’s liberation movement included a highly publicized, although unsuccessful, attempt to pass the Equal Rights Amendment (ERA) to the Constitution of the United States. New and effective methods of contraception were introduced in the 1950s and 1960s. In 1973, the U.S. Supreme Court ruled that state laws banning abortion were unconstitutional. In Canada, abor- tion was illegal until 1969 when the law was changed to allow abortions for health reasons. Pop- ular literature and music heralded the sexual revo- lution and an era of “free love.” In all industrialized countries, a new ideology was emerging during these years that stressed personal freedom, self- fulfillment, and individual choice in living arrange- ments and family commitments (Bianchi et al., 2012; Cherlin, 2009). People began to expect more out of marriage and to leave marriages that failed to fulfill their expectations. Certainly not all Americans approved of all these changes in beliefs and behav- iors. The general North American culture changed, though, as divorce and single parenting became more widespread realities.

An Aging Society For Americans born in 1900, the average life expectancy was less than 50 years. But the early decades of the 20th century brought such tremen- dous advances in the control of communicable diseases of childhood that life expectancy at birth increased to 70 years by 1960. Rapid declines in mortality from heart disease—the leading cause of death—significantly lengthened life expectancy for those aged 65 or older after 1960 (Treas & Torrecilha, 1995). By 2009, life expectancy at birth

was nearly 79 years for Americans (National Cen- ter for Health Statistics, 2008) and 81 years for Canadians (World Health Organization, 2011). An American woman who reached age 60 in 2009 could expect to live an additional 25 years, on av- erage, and a 60-year-old American man would live another 22 years. For Canadians, life expectancy at age 60 is even higher—26 years for women and 23 years for men. Women continue to outlive men in North America, though the gender gap in recent years has shrunk somewhat, primarily because of the delayed effects of smoking trends (men have always been more likely to smoke than women, but they have reduced smoking much more than women in recent decades). The gap in life ex- pectancy between men and women means that women tend to outlive their husbands and women predominate in the older age groups. About 60% of the population 75 years and older in the United States and Canada are women (Statistics Canada, 2012d).

Partly because more North Americans are sur- viving until older ages, and partly because of a long-term decline in fertility rates, the propor- tion of the population aged 65 or older has grown. In 1900, only 1 of every 25 Americans was aged 65 or older (nearly 3% of the total popula- tion). By 2011, the proportion was more than 3 in 25 (13% of the total population). In 2011, the first of some 78 million baby boomers reached their 65th birthdays, and the rate of in- crease of the population of elderly persons began to accelerate. By 2030, it is expected that one in five Americans will be aged 65 or older. The sce- nario for Canada is similar, although Canada has a slightly higher proportion of the population aged 65 and older; in 2011, 14.8% of Canada’s population was 65 years and older compared with 13.3% of U.S. residents (Statistics Canada, 2011a; U.S. Census Bureau, 2011d).

People do not suddenly become old on their 65th birthday, of course. Together with improve- ments in life expectancy have come improvements in the disability rates at older ages, so that North Americans are not only living longer than in the past but also enjoying more years of life without chronic illness or disabilities. In the United States, 65 is still a convenient marker for “old age” in health policy terms, because it is the age at which most Americans become eligible for medical and hospital insurance funded mainly by the federal

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government through Medicare. By 65, as well, most workers (both men and women) have left full- time work, though many continue to work part- time, or for part of the year, often at different jobs than those they pursued during most of their ca- reers. Given the growing number of elderly per- sons, the Canadian government will raise the eligible age for Old Age Security (OAS) from 65 to 67 between 2023 and 2029 to ease pressures on the OAS budget and to ensure the program’s sustain- ability (Service Canada, 2012).

The aging of the population is often considered a major cause of increasing demand for medical services and of the growth in medical expenditures. Population aging is, indeed, one factor, because older people in every country consume more med- ical care than younger adults. The major causes of increased health expenditures in industrialized countries, however, have been changes in medical technology, including increased use of pharmaceu- ticals, rather than the simple growth of the popu- lation of elderly persons (Reinhardt, 2003).

Increased life expectancy translates into ex- tended years spent in family relationships. A couple who marry in their twenties could spend the next 50 years together, assuming they remain married. Couples in the past were much more likely to ex- perience the death of one spouse earlier in their adult years. Longer lives (together with lower birth rates) also mean that people spend a smaller por- tion of their lives parenting young children. More parents live long enough to be part of their grand- children’s and even great-grandchildren’s lives (Bengtson, 2001). Many adults are faced with the de- mands of caring for extremely elderly parents about the time they reach retirement age and begin to ex- perience health limitations of older age themselves.

Immigration and Ethnic Diversity In 1965, the U.S. Congress amended the Immigra- tion and Naturalization Act to create a fundamental change in the nation’s policy on immigration. Visas for legal immigrants were no longer to be based on quotas for each country of origin; instead, prefer- ence would be given to immigrants joining family members in the United States. The legislation also removed limitations on immigration from Latin America and Asia. The numbers of legal immi- grants to the United States increased, to an average of 900,000 persons per year in the 1990s and to

1.1 million in 2011. Immigration has likewise in- creased in Canada from about 140,000 in 1980 to 249,000 in 2011. In 2011, 66% of legal immigrants were admitted to the United States because family members already living there petitioned the gov- ernment to grant them entry (U.S. Department of Homeland Security, 2012). For Canada, the corre- sponding figure is 61% (Citizenship and Immigra- tion Canada, 2011). Immigrant visas were also granted for economic reasons, usually after em- ployers petitioned the government for admission of persons with special skills or for humanitarian reasons, including asylum granted to refugees be- cause of well-founded fear of persecution in their home countries. In the United States and Canada, immigration laws provide refugees with resettle- ment assistance including temporary health care services. The goal of these programs is to promote and improve the health of refugees, as well as to control the potential spread of any contagious diseases brought into the country by these immi- grants. The benefits of these health programs are restricted to the prevention and treatment of disease that poses a risk to the public health and safety (Citizenship and Immigration Canada, 2012; U.S. Centers for Disease Control and Prevention, 2010).

In addition to legal immigrants, an estimated 10.8 million illegal immigrants lived in the United States in 2010, either because they entered without detection or because they stayed longer than allowed by a temporary visa (Hoefer, Rytina, & Baker, 2011). In 2010, the U.S. Census Bureau es- timated that there were 40 million U.S. residents born outside the country, nearly 13% of the total population (Grieco et al., 2012). Because immi- grants tend to arrive in the United States early in their working careers, they are younger, on aver- age, than the overall U.S. population and account for a larger share of young families. In 2010, for ex- ample, 20% of all births in the United States were to mothers born outside the country (U.S. Census Bureau, 2010e). Illegal immigrants are ineligible for any type of federal public benefits including welfare, Social Security, and health services such as Medicaid and Medicare (U.S. Department of Health and Human Services, 2009).

Estimates based on 2007 U.S. American Com- munity Survey data reveal that 55 million people older than age 5 speak a language other than Eng- lish at home, the most common being Spanish

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(34.5 million) and Chinese (2.5 million). In the United States, half of adults 18 to 40 years old who speak Spanish at home reported that they could not speak English well (Shin & Kominski, 2010). Keep in mind, however, that the overwhelming majority of those who do not speak English well are recent immigrants. More than 96% of the native-born who speak Spanish at home report that they can speak English well (Saenz, 2004). In Canada, although English and French are still dominant, more than 200 languages are now spo- ken in the country. In 2011, 6.6 million people, representing nearly 20% of the Canadian popula- tion, reported speaking a language other than English or French at home. Of them, a third, or 2.1 million, reported speaking only a language other than English or French at home, primarily Asian languages. The 10 most common foreign languages spoken in 2011 in Canada were Punjabi, Chinese (not specified), Cantonese, Spanish, Tagalog, Arabic, Mandarin, Italian, Urdu, and German (Statistics Canada, 2012h).

The majority of foreign-born U.S. residents live in states that are the traditional “gateways” to immigrant populations: California, New York, Florida, Texas, and Illinois. In recent decades, however, significant increases have occurred in the immigrant populations of most parts of the coun- try, including the rural South and the Upper Mid- west, which had seen few immigrants for most of the 20th century (Singer, 2004).

Implications for Health Care Providers The aging and the growing diversity of the American and Canadian populations, combined with shifts in the economy and changing norms, values, and laws, have altered the context for the nursing care of families. As the population ages, the demand will increase for nurses who specialize in caring for elderly persons, and even those who do not choose a geriatric specialty will find that older people constitute an increasing portion of the patient population. Improvements in health and physical functioning among those aged 60 to 70 reduce the need for care among this group. Yet rates of population growth are greatest for those aged 80 and older, implying an increased demand for care among the “oldest old” who are likely to suffer from poorer health and require substantial care. Because women continue to outlive men, on

average, nurses are more likely to be dealing with the health care needs of older women than of men. Extended lives and delayed childbearing have in- creased the chances that adults will experience the double whammy of having to provide care and financial support for their children and their par- ents. Families in these situations can face consider- able time and money pressures.

At the same time that changing gender roles point to more men in families taking on caregiving duties, more women are in the labor force and un- available to care for family members, and it is doubtful that the increase in men’s time in caregiv- ing will fully compensate for the decrease in women’s time. Individuals and families are increas- ingly turning to extended kin and informal care providers to meet their health needs. Societal changes also influence individuals’ life-course trajectories. All these changes in individual lives and family relationships are transforming North American households and families and, in turn, changing the context in which health needs are de- fined and both formal and informal health care are provided. Nurses are more likely to encounter fathers seeking health care for their children, and individuals whose health needs are met by informal extended kin or untrained caretakers, especially among the fragile and older populations.

The growth of the immigrant population, and its spread throughout both the United States and Canada, has meant that patient populations in many regions are more racially and ethnically diverse than in the past. Working with a diverse pool of immigrant and refugee populations, health care providers may encounter health conditions and diseases unusual in North America. Nurses in North America work with families whose cultural backgrounds, perceptions of sickness, and expecta- tions of healers may be different from those with which they are familiar. Everyone providing health care can expect to face both the challenges and the professional rewards of adapting to a diverse patient population.

LIVING ARRANGEMENTS

The demographic changes for individuals dis- cussed earlier in this chapter are reflected in changes in living arrangements, which have become more diverse over time. For most statistical

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purposes, a family is defined as two or more peo- ple living together who are related by blood, mar- riage, or adoption (Casper & Bianchi, 2002). Most households (defined by the U.S. Census Bureau as one or more people who occupy a house, apartment, or other residential unit, as op- posed to “group quarters” such as nursing homes or student dormitories) are maintained by fami- lies. Demographic trends, including late mar- riage, divorce, and single parenting, have resulted in a decrease in the “family share” of U.S. and Canadian households. In 1960, in the United States, 85% of households were family house- holds; by 2012, just 66% were family households (U.S. Census Bureau, 2012). Married-couple family households with children under 18 consti- tuted 44% of all households in 1960, but only 20% of all households in 2012 (authors’ calcula- tions from U.S. Census Bureau, 2012). Nonfam- ily households, which consist primarily of people who live alone or who share a residence with roommates or with a partner, have been on the rise. The fastest growth was among persons living alone, although much of this growth occurred during the 1960s and 1970s. The proportion of households with just one person more than dou- bled from 13% to 27% between 1960 and 2012 (authors’ calculations from U.S. Census Bureau, 2012). Thus, fewer Americans live with family members who can help care for them when they are ill or injured.

In Canada, in 1981, two-thirds of households were single-family households maintained by married or cohabitating couples, but by 2011 the percentage declined to 56% (Statistics Canada, 2011c). As in the United States, the percentage of households that contained two parents with children declined from 36% in 1981 to 26% in 2011. The proportion of Canadian households that contained one person grew from 20% in 1981 to 28% in 2011. Single-person households were the fastest growing type of household (Casper & Bianchi, 2002). With the diversity of family forms that have emerged, nurses are in- creasingly likely to encounter patients who are living alone and have no one to help them in the home should they become seriously ill. Nurses will come into contact with more single-mother families who are more likely than other types of families to be time poor and cash strapped. In fact, most families with children today do not

conform to the traditional notion of a breadwinner/ homemaker family.

Living Arrangements of Elderly Persons Improvements in the health and financial status of older Americans helped generate a revolution in lifestyles and living arrangements among elderly persons. Older North Americans now are more likely to spend their later years with their spouse or live alone, rather than with adult children as in the past. The options and choices differ between eld- erly women and elderly men, however, in large part because women live longer than men, yet have fewer financial resources.

At the beginning of the 20th century, more than 70% of Americans aged 65 or older resided with kin (Ruggles, 1994). In part because of increased incomes of elderly persons but also because of declining numbers of children and increased di- vorce rates, the proportion of elderly adults living alone has increased dramatically. Just 15% of wid- ows aged 65 or older lived alone in 1900, whereas 66% lived alone in 2011 (Ruggles, 1996; U.S. Census Bureau, 2011b). In 2011, 44% of the population aged 65 and older lived alone (U.S. Census Bureau, 2011l).

A woman is likely to spend more years living alone after a spouse dies than will a man because life expectancy is about 3 years longer for an elderly woman than for an elderly man, and because women usually marry men older than themselves. As a result, older American women are nearly twice as likely as men to be living alone (37% vs. 19%) (U.S. Census Bureau, 2011b). This pattern is sim- ilar in Canada; for example, in 2011 among Cana- dians aged 65 and older, 32% of women lived alone compared with only 16% of men (Statistics Canada, 2011b). Just under half of all American women aged 75 and older live by themselves (U.S. Census Bureau, 2011b). Living alone can mean de- lays in getting attention for illness or injury and can complicate arrangements for informal care or transportation to formal care when needed.

Elderly American women are also more than twice as likely as men to be living with someone other than their spouse (19% vs. 9%), in part be- cause they tend to live longer and reach advanced ages when they are most likely to need the physical care and the financial help others can provide (authors’ calculations from U.S. Census Bureau,

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2012). In the United States, 43% of adults over 65 will reside in assisted living facilities at some point in their lives. In Canada, a larger proportion of women (33%) than men (22%) aged 85 and older lived in institutional settings in 2011 (Statistics Canada, 2011b). Elderly men who need help with activities of daily living (ADLs) such as eating, bathing, or getting around generally receive infor- mal care from their wives, whereas elderly women with disabilities are more likely to rely on assistance from grown children, to live with other family members, or to enter a nursing home (Silverstein, Gans, & Yang, 2006).

To explain trends in living arrangements among elderly persons, researchers have focused on a variety of constraints and preferences that shape people’s living arrangement decisions (Bianchi, Hotz, McGarry, & Seltzer, 2008). The number and sex of children generally affect the likelihood that an elderly person will live with relatives. The greater the number of children, the greater the chances that there will be a son or daughter who can take care of an elderly parent. Daughters are more likely than sons to provide housing and care for an elderly parent, presumably as an extension of the traditional female caretaker role and stronger norms of filial responsibility. Geographical distance from children is also a key factor; having children who live nearby promotes co-residence when living independently is no longer feasible for the elderly person (Haxton & Harknett, 2009; Silverstein et al., 2006).

Older Americans with higher income and bet- ter health are more likely to live independently (Klinenberg, 2012). In the United States, since 1940, growth in Social Security benefits ac- counted for half of the increase in independent living among elderly persons (McGarry & Schoeni, 2000). By contrast, elderly Americans in financial need are more likely to live with rela- tives (Klinenberg, 2012).

Social norms and personal preferences also determine the choice of living arrangements for elderly persons (Seltzer, Lau, & Bianchi, 2012; Silverstein et al., 2006). Many elderly individuals are willing to pay a substantial part of their in- comes to maintain their own residence, which sug- gests strong personal preferences for privacy and independence (Klinenberg, 2012). Social norms involving family obligations and ties may be espe- cially important when examining racial and ethnic

differences in the living arrangements of elderly persons. Immigrants and ethnic minorities are more likely than whites to live with an elderly relative not only because of their often limited economic circumstances, but also because their cultural norms and values stipulate moral obligations to care for the elderly (Cohen & Casper, 2002; Glick & Van Hook, 2002).

Despite the trend toward independent living among older Americans, many of them are not able to live alone without assistance. Many families who have older kin in frail health provide extraordinary care. One study in New York City, for example, found that 40% of those who reported caring for an elderly relative devoted 20 or more hours per week to such informal care, and 80% of caregivers had been providing care for more than a year (Navaie-Walsier et al., 2001).

Despite the growth of home-health services and adult day-care centers, most long-term care con- sists of care provided informally, usually by spouses or younger relatives (Stone, 2000). Adult women, in particular, are likely to have primary responsi- bility for home care of frail elderly persons, often including parents-in-law. Some evidence suggests that female caregivers experience greater levels of stress than do male caregivers (Yee & Schulz, 2000). Research has shown that even relatively low- cost interventions, such as support groups and tele- phone counseling, to assist informal caregivers can greatly reduce the harmful effects of such stress on caregivers’ health (Belle & REACH II Investiga- tors, 2006).

Living Arrangements of Young Adults The young-adult years (ages 18–30) have been described as “demographically dense” because these years involve many interrelated life-altering transitions (Rindfuss, 1991). Between these ages, young people usually finish their formal schooling, leave home, develop careers, marry, and begin families, but these events do not always occur in this order. Delayed marriage extends the period during which young adults can experiment with alternative living arrangements before they adopt family roles. Young adults may experience any number of independent living arrangements before they marry, as they change jobs, pursue education, and move into and out of intimate re- lationships. They may also return to their parents’

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homes for periods of time, if money becomes tight or at the end of a relationship.

In 1890, half of American women had married by age 22, and half of American men had married by age 26. The ages of entry into marriage dipped to an all-time low during the post–World War II baby-boom years, when the median age at first marriage reached 20 years for women and 23 years for men in 1956. Age at first marriage then began to increase and reached 26 years for women and 28 years for men by 2009 (Kreider & Ellis, 2011b). In Canada, the average age at marriage increased from 25 years in 1972 to 31 years in 2008 for men and from 23 years to 29 years for women (Statistics Canada, 2008). In 1960, it was unusual for a woman to reach age 25 without marrying; only 10% of women aged 25 to 29 had never married (Casper & Bianchi, 2002). In 2011, 50% of women aged 25 to 29 in the United States and 64% of men in the same age group had never been married (U.S. Census Bureau, 2011h).

This delay in marriage has shifted the family and living arrangement behaviors in young adulthood in three important ways. First, later marriage coin- cides with a greater diversity and fluidity in living arrangements in young adulthood. Second, delay- ing marriage has accompanied an increased likeli- hood of entering a cohabitating union before marriage. Third, the trend to later marriage affects childbearing; it tends to delay entry into parent- hood and, at the same time, increases the chances that a birth (sometimes planned but more often un- intended) occurs before marriage (Bianchi & Casper, 2000).

Many demographic, social, and economic fac- tors influence young adults’ decisions about where and with whom to live (Casper & Bianchi, 2002). Family and work transitions are influenced greatly by fluctuations in the economy, as well as by chang- ing ideas about appropriate family life and roles for men and women. Since the 1980s, the transition to adulthood has been hampered by recurring reces- sions, tight job markets, slow wage growth, and soaring housing costs, in addition to the confusion over roles and behavior sparked by the gender rev- olution. Even though young adults today may pre- fer to live independently, they may not be able to afford to do so (Rosenfeld, 2007). Many entry-level jobs today offer low wages, yet housing costs have soared, putting independent living out of reach for many young adults. Higher education, increasingly

necessary in today’s labor market, is expensive, and living at home may be a way for families to curb higher education expenses. Even when young adults attend school away from home, they still fre- quently depend on their parents for financial help and may return home after graduation if they can- not find a suitable job.

The percentage of young men living in their parents’ homes was 59% in 2011, about the same as in 1970, whereas the percentage increased for young women from 39% to 50% (U.S. Census Bureau, 2011i). In Canada, the proportion of young adults who resided with their parents in- creased dramatically from 28% in 1981 to 44% in 2006 (Statistics Canada, 2007).

Young adults who leave home to attend school, join the military, or take a job have always had, and continue to have, high rates of “returning to the nest” and have become known as “boomerang chil- dren.” Those who leave home to get married have had the lowest likelihood of returning home, although returns to the nest have increased over time even in this group.

American parents often take in their children after they return from the military or school, or when they are between jobs. In the past, however, many American parents apparently were reluctant to take children in if they had left home simply to gain “independence.” This is not true today. Before the 1970s, leaving home for simple independence was probably the result of friction within the fam- ily, whereas today, leaving and returning home seems to be a common part of a successful transi- tion to adulthood (Klinenberg, 2012; Rosenfeld, 2007). In the past, a young adult may have been reluctant to move back in with parents because a return home implied failure; fewer stigmas are attached to returning home these days (Casper & Bianchi, 2002).

Changing demographic behaviors among young adults and their living arrangements have implica- tions for family health care nursing. In contrast to the situation in Canada, in the United States, young adults often lack health insurance and, in many cases, are not financially independent, reduc- ing the likelihood that they will receive routine checkups or seek medical care when the need arises (Casper & Haaga, 2005). The increasing numbers of people showing up in emergency rooms and urgent care settings put additional pressure on the health care providers, especially nurses. Also, the

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acuity level of the medical problems in these young adults is greater because they did not seek earlier treatment.

Unmarried Opposite-Sex Couples One of the most significant household changes in the second half of the 20th century in North America was the increase in men and women living together without marrying. The increase of cohab- itation outside marriage appeared to counterbalance some of the delay of marriage among young adults and the overall increase in divorce. Unmarried- couple households made up less than 1% of U.S. households in 1960 and 1970 (Casper & Cohen, 2000). This share increased just over 2% by 1980, and to nearly 9% by 2011, representing 7.6 million family groups (U.S. Census Bureau, 2011m). Unmarried-couple households also are increas- ingly likely to include children. In 1978, 24% of unmarried-couple households included children younger than 15; by 2011, 40% of unmarried- partner family groups included children. Although the percentage of U.S. households consisting of an unmarried couple is small, many Americans have lived with a partner outside marriage at some point. Nearly 62% of the couples who married between 1997 and 2002 had lived together before marriage, up from 49% in 1985 to 1986, and a big jump from just 8% of first marriages in the late 1960s (Bumpass & Lu, 2000; Kennedy & Bumpass, 2008).

In Canada, cohabitating couples are known as common-law couples. The 2001 Canadian Census showed that increasing proportions of families were headed by common-law couples, from 5.6% in 1981 to 13.8% in 2001. By 2011 this figure increased to 17% (Statistics Canada, 2012e). As in the United States, more Canadian children are living with common-law (cohabitating) parents. Nearly 44% of common-law couples in 2011 have children under age 24 residing with them. In 2011, about 910,700 children aged 0 to 14 (16.3% of the total) lived with common-law parents, up from 12.8% in 2001 (Statistics Canada, 2012e). In both countries, the pace of the increase in cohabitation has slowed some- what since the rapid rise in the 1970s and 1980s.

Why has cohabitation increased so much? Re- searchers have offered several explanations, includ- ing increased uncertainty about the stability of marriage, the erosion of the stigma associated with cohabitation and sexual relations outside of marriage, the wider availability of reliable birth

control, economic changes, and increased individ- ualism and secularization (Bianchi et al., 2012; Cherlin, 2009). Youths reaching adulthood in the past two decades are much more likely to have wit- nessed their parents’ divorce than any generation before them. Some have argued that cohabitation allows a couple to experience the benefits of an intimate relationship without committing to mar- riage. If a cohabitating relationship is not success- ful, one can simply move out; if a marriage is not successful, one suffers through a sometimes lengthy and difficult divorce.

Nevertheless, most adults in the United States eventually do marry. In 2011, 90% of women aged 50 to 54 had been married at least once (U.S. Census Bureau, 2011h). An estimated 88% of U.S. women born in the 1960s will eventually marry; however, considerable differences exist by race/ethnicity (Raley, 2000). For example, 88% of African American women reaching adulthood in the 1960s would eventually marry, compared with only 66% coming of age in the 2000s. The meaning and per- manence of marriage may be changing, however. Marriage used to be the primary demographic event that marked the formation of new house- holds, the beginning of sexual relations, and the birth of a child. Marriage also implied that an individual had one sexual partner, and it theoreti- cally identified the two individuals who would par- ent any child born of the union. The increasing social acceptance of cohabitation outside marriage has meant that these linkages can no longer be assumed. Couples began to set up households that might include the couple’s children, as well as chil- dren from previous marriages or other relation- ships (Casper & Bianchi, 2002). Similarly, what it meant to be single was no longer always clear, as the personal lives of unmarried couples began to resemble those of their married counterparts.

Cohabitating households can pose unique challenges for health care providers, especially in the United States. Because cohabitating relation- ships are not legally sanctioned in most states, partners may not have the right to make health care decisions on behalf of each other or of the other’s children (Casper & Haaga, 2005). Cohab- itating couples report poorer health and have lower incomes than do married couples, on aver- age (Waite & Gallagher, 2000). Thus, although they are more likely to need health care services, they may be less likely to have the financial ability to secure them.

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Same-Sex Couples The number of same-sex couples has increased sub- stantially in North America over the past couple of decades. A conservative estimate shows that the num- ber of same-sex couples in the United States grew by 80% from 358,390 in 2000 to 646,464 in 2010 (Lofquist, Lugaila, O’Connell, & Feliz, 2012). In Canada, the number of same-sex couples increased by 42.4% from 45,345 in 2006 to 64,575 in 2011, of which nearly a third were married couples (Statistics Canada, 2012e). The vast majority of same-sex cou- ples live in common-law or cohabitating relation- ships. Before 2000, same-sex marriage was not legally recognized. In 2005, however, after the Netherlands and Belgium, Canada became the third country to legalize same-sex marriage. Following legalization, the number of same-sex married couples in Canada almost tripled from 7,465 in 2006 to 21,015 in 2011 (Statistics Canada, 2012e). In the United States, fed- eral law provides each state with autonomy to grant marriage recognition and legal rights to same-sex couples. In 2004, Massachusetts became the first state to legalize same-sex marriage; since then, a number of states and jurisdictions have followed suit. Never- theless, same-sex marriage is still not legally recognized in most states.

Although the division of labor for parenting and household chores in same-sex families tends to be more egalitarian than among opposite-sex couples, same-sex couples are not as “genderless” as has been previously suggested. This equality often changes as couples transition to parenthood, when one of the partners usually becomes more involved in child rearing, assumes more responsibility for housework, and often becomes the partner in charge of caring for the health of the children and seeking health services for them.

PARENTING

Even with the increase in divorce and cohabita- tion, postponement of marriage, and decline in childbearing, most North American adults have children, and most children live with two parents. In 2011, 64% of families with children were two- parent, married families and an additional 5% were two-parent, unmarried families (U.S. Census Bureau, 2011a). In Canada, in 2011, the level was comparable: 62% of Canadian families with chil- dren were married two-parent families, 14% were

two-parent common-law families, and 24% were lone-parent (single-parent) families (authors’ calculations from Statistics Canada, 2011c). In 2011, 26% of American families were mother- only families and only 4% were father-only fami- lies. “Lone-parent families” in Canada increased from 9% of all families (including those with no children) in 1971 to about 16% in 2011, in- cluding 13% lone mothers and 3% lone fathers. The changes in marriage, cohabitation, and non- marital childbearing over the past few decades have had a profound effect on North American families with children and are changing our images of parenthood.

This section discusses individuals’ and couples’ transitions into parenthood, beginning with cur- rent trends in fertility, the increased use of assisted reproductive technologies (ARTs) to achieve par- enthood, and trends and patterns in adoption. As individuals become parents, different types of fam- ily forms emerge. The section explores single motherhood, fathering, and child rearing within cohabitation and same-sex couple families. The section concludes with a discussion of the impor- tant role grandparents are playing in rearing and caring for grandchildren.

Fertility In the United States and Canada, fertility has ex- hibited a trend of long-term decline for more than a century, interrupted by the baby-boom period and other small fluctuations. In recent decades, fer- tility rates in most developed countries have fallen below the level required to replace the population. Replacement-level fertility refers to the required number of children each woman in the population would have to bear on average to replace herself and her partner, and it is conventionally set at 2.1 children per woman for countries with low mortal- ity rates. This threshold is set slightly above 2 in order to account for a negligible rate of childhood mortality and a small proportion of individuals who do not survive to their reproductive age (Preston, Heuveline, & Guillot, 2001).

The U.S. fertility decline has not been very dras- tic; thus, the United States is an atypical case among developed countries. Figure 2-1 shows the trends in fertility rates since the 1930s for the United States and Canada, respectively. As this graph shows, both countries experienced a post- WWII baby boom during the 1950s and 1960s,

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after which fertility began to decline again. Since the 1980s, the United States has exhibited fertility rates close to replacement level. In 2010, the total U.S. fertility rate was 1.93 children per woman (Martin et al., 2012). In Canada, however, the fer- tility decline has been of greater magnitude; in 2010, the fertility rate was 1.63 (Statistics Canada, 2012a). Persistent levels of below replacement fer- tility have raised concerns regarding population shrinkage. Fewer births also imply a subsequent contraction of the working-age population that, coupled with increases in life expectancy, reduces the tax base that supports health care and retire- ment benefits for the aging population (Lee, 2003). In the United States and Canada, a significant pro- portion of population growth during recent decades has come from immigration.

Fertility varies by demographic characteristics. In the United States, except for Asians, immigrants tend to exhibit higher fertility rates than the native- born population. In 2010, native-born women had on average 1.8 children, whereas foreign-born women had 2.2 children (U.S. Census Bureau, 2010d). Fertility also varies by race and ethnicity. In 2010 in the United States, fertility was the high- est among Hispanic women (2.3), followed by African Americans (2.0), and the lowest rate was observed among white and Asian women (1.80) (U.S. Census Bureau, 2010d). The differences are greater by educational level. Women with less than a high school education had on average 2.56 births, whereas women with a graduate or professional de- gree had only 1.67 births (U.S. Census Bureau, 2010d).

The causes behind the secular trends in fertility decline can be grouped into socioeconomic, ideolog- ical, and institutional factors. Among socioeconomic factors are the increase in women’s opportunity costs and the rising cost of rearing children. The socioeconomic position of women has drastically changed since the 1960s. Economic changes have also made it more difficult to maintain a family on the income of a single earner. Women’s education and labor force participation increased considerably during this period. In addition, changes in laws and civil rights have reduced discriminatory practices against women. All of these changes have resulted in increases in women’s wages, although they have not yet reached parity with men’s. As women’s incomes and career opportunities have improved, women’s opportunity costs of not participating in the labor market have increased, thus reducing women’s fer- tility intentions. At the same time, higher educational expectations for children and rising living standards have substantially increased the costs of raising chil- dren (Lino, 2012).

Cultural and ideological changes, such as the growth in individualism and the desire for self- realization, have decreased the appeal of long-term commitments, including childbearing (Bianchi et al., 2012; Cherlin, 2009). The accentuation of individual autonomy and the rise of feminism have increased the desirability for more symmetrical gender roles. However, institutions dealing with family life still exhibit high levels of gender in- equality. Equal opportunities for women in educa- tion and employment are often curtailed within families as women continue to pay a penalty for having children in the form of reduced career in- volvement and income prospects. This asymmetry accentuates the incompatibility of childbearing and labor force participation (McDonald, 2000).

In addition, in the 1960s more effective birth con- trol methods became available, providing couples with better means to control their fertility. More- over, favorable attitudes toward nonmarital sex and cohabitation have also weakened the link between sex, marriage, and childbearing (Casper & Bianchi, 2002). Thus, most developed countries have experi- enced a considerable rise in nonmarital births to sin- gle and cohabitating mothers. In 2010, 41% of all births in the United States were to unmarried women, of which 58% were to cohabitating women (Martin et al., 2012). In Canada, births to unmarried women have also increased, representing 27.3% of all births in 2007 (U.S. Census Bureau, 2012).

46 Foundations in Family Health Care Nursing

1930 1940 1950

Replacement level

1960 1970

Total Fertility Rate for the U.S. and Canada: 1930–2010

1980 1990

U.S. Canada

2000 2010

4.5 4.0 3.5 3.0 2.5 2.0 1.5 1.0 0.5 0.0

FIGURE 2-1 Total fertility rate for the United States and Canada: 1930–2010. (Data from Martin et al., 2012; Statistics Canada, 2011d.)

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Family Demography: Continuity and Change in North American Families 47

The birth rate for teenagers has decreased sub- stantially in both countries, although in the United States this rate is more than twice that observed in Canada. In Canada in 2008, only 4% of all births were to women ages 15 to 19, compared with 9% in the United States in 2010. The birth rate for teenagers in Canada was 14.3 births per 1,000 women in 2008, down from 26.1 in 1981 (Milan, 2011). The U.S. teenage birth rate for women ages 15 to 19 was 34.3 births per 1,000 women in 2010, down from 52.2 in 1981 (Martin et al., 2012). The United States still exhibits one of the highest rates of teenage pregnancy in the industrialized world.

Nonetheless, women increasingly have been delaying childbearing since the 1960s; thus, the av- erage age at first birth has risen in both countries. In 2010, the average age at first birth in the United States was 25.4 (Martin et al., 2012). In 2008 in Canada, the average age at first birth was 28.1, up from 23.5 in the mid-1960s (Milan, 2011). How- ever, the onset of fertility varies by race/ethnicity in the United States. Whereas the average age at first birth for African American and Hispanic women was slightly above 23 years in 2010, for white women it was 26.3. Asian and Pacific Is- landers exhibited the highest average age at first birth at 29.1 (Martin et al., 2012). Thus, childbear- ing for middle-class whites and Asians is increas- ingly becoming concentrated in the late twenties and early thirties.

Overall, these trends imply not only that women are having fewer children, but also that they are increasingly having children at older ages. Nurses are more likely to encounter more educated and mature mothers and pregnant women. However, as women wait longer to have their first child, complications in pregnancies and deliveries will become more common. Moreover, age-related infertility will be more likely to affect these women, increasing the rate of involuntary infertility. As delays in fertility continue, a larger pool of women approaching the end of their reproductive years will seek the services of as- sisted reproductive technology.

Assisted Reproductive Technologies (ARTs) Although various definitions have been used for assisted reproductive technologies (ARTs), the cur- rent definition used by the U.S. Centers for Dis- ease Control and Prevention (CDC) is based on the

1992 Fertility Clinic Success Rate and Certification Act. According to this definition, ARTs include all fertility treatments in which both eggs and sperm are handled. In general, ART procedures in- volve surgically removing eggs from a woman’s ovaries, combining them with sperm in the labora- tory, and returning them to the woman’s body or donating them to another woman. According to this definition, treatments in which only sperm are handled are not included (i.e., intrauterine—or artificial—insemination), nor are procedures in which a woman takes medications only to stimulate egg production without the intention of having eggs retrieved (U.S. Centers for Disease Control and Prevention, 2012).

ARTs have been used in the United States since 1981 to help women become pregnant, most com- monly through the transfer of fertilized human eggs into a woman’s uterus (in vitro fertilization). Deciding whether to undergo this expensive and time-consuming treatment can be difficult. World- wide, an estimated 9% of couples meet the defini- tion of infertility, with 50% to 60% of them seeking care (Boivin, Bunting, Collins, & Nygren, 2007). In the United States, approximately 7% of married couples reported at least 12 months of un- protected intercourse without conception, while 2% of women reported having visited an infertility- related clinic within the past year (Chandra, Martinez, Mosher, Abma, & Jones, 2005). In Canada, the estimated percentage of couples expe- riencing infertility in 2010 ranged from 11.5% to 15.7%, depending on the definition of infertility used. Infertility treatment costs sum up to well over three billion dollars annually in the United States (Myers et al., 2008). As women wait longer to have their first child, the likelihood of age-related infer- tility increases. Although there is some controversy about whether the proportion of the population with self-reported infertility is increasing, stable, or decreasing, there has been a clear increase in the use of ARTs (Stephen & Chandra, 2006; Sunderam et al., 2012).

The number of in vitro fertilization (IVF) cycles performed in the United States increased from ap- proximately 30,000 in 1996 (Myers et al., 2008) to over 147,000 in 2010, resulting in 47,090 live births (deliveries of one or more living infants) and 61,564 infants (U.S. Centers for Disease Control and Pre- vention, 2012). Over this time, the proportion of deliveries in the United States resulting from ARTs has increased from 0.37% in 1996 to 0.94% in

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2005. In 2009, ARTs accounted for 1.4% of U.S. births (Sunderam et al., 2012). In Canada 3,428 ba- bies were born through ARTs in 2007 (Assisted Human Reproduction Canada, 2011). ARTs often result in multiple births, such as twins, triplets, and so on, which increases health risks for children and mothers. In the United States and Canada, nearly 30% of all ART births result in multiple births. Due to high costs and increased health risks, the Assisted Human Reproduction Canada (AHRC) agency has set as a goal to reduce the rate of mul- tiple births resulting from ARTs (AHRC, 2011).

A growing number of same-sex couples seeking to become parents are also turning to ARTs to achieve this goal: in the case of lesbians, usually through the use of a sperm donor and artificial in- semination; and in the case of gay men, through the use of an egg donor and/or a surrogate. It is worth noting that male same-sex couples face greater challenges than female same-sex couples to become parents, not only because fertility centers are less likely to accept male gay patients, but also because the procedure is more expensive as it involves ob- taining both an oocyte donor and a gestational sur- rogate, that is, a woman who will carry the zygote and take the pregnancy to term (Greenfeld, 2007).

Although data on psychological outcomes of women who become pregnant after infertility treat- ment are quite limited, the available data suggest that women have outcomes as good as, and perhaps better than, women who get pregnant from spon- taneous conception. Based on the available litera- ture, there are no differences in parenting skills when comparing singleton pregnancies resulting from ART to spontaneous conceptions (Myers et al., 2008). In fact, mothers of infants resulting from ART appear to have better outcomes. By con- trast, there is some evidence that fathers may do worse on some scales. The multiple gestations and preterm births that frequently result with ART significantly increase stress and depressive symp- toms, especially for mothers of infants with chronic disabilities.

Births resulting from ART are more likely to in- volve multiple births, pregnancy complications, preterm delivery, and low birth weight, all of which may pose substantial risks to the health of mothers and infants. Additionally, children born as a result of ART experience relatively worse neurodevelop- mental outcomes, higher rates of hospitalization, and more surgeries than other children. There is little evidence, however, that the relatively worse outcomes for ART babies are a direct result of in- fertility treatments; infertility treatments are more likely to be used by couples with a history of subfertility—difficulty achieving and sustaining pregnancy without medical assistance—and worse outcomes typically result for the children of these couples, irrespective of whether they have received infertility treatments (Myers et al., 2008).

In sum, family nurses will likely encounter a growing number of opposite-sex couples seeking infertility treatment, as well as same-sex couples who wish to become parents. This process is time consuming, expensive, and stressful for all of the parties involved. Unsuccessful attempts to become pregnant are likely to be met with sorrow, anger, and regret. Nurses should be aware of the delicate circumstances surrounding this type of care. They should also be aware of the heightened risk of mul- tiple births, potential birth defects, and increased women’s health risks.

Adoption Accurate trends on adoption in the United States are difficult to obtain, but U.S. Census Bureau data

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indicate that the number of adopted children increased in the 1990s from about 1.6 million in 1991 to 2.1 million in 2004 and then decreased to 1.4 million in 2009 (Kreider & Ellis, 2011a). Other data show that in 2007 there were approximately 1.7 million adopted children living in the United States (Vandivere, Malm, & Radel, 2009). Box 2-2 illustrates the three primary forms of adoption in the United States: foster care adoption, private domestic adoption, and international adoption.

According to the U.S. Administration for Chil- dren and Families, the number of adoptions from foster care has ranged from 50,000 to 57,000 an- nually between 2002 and 2011, with some fluctua- tions and no clear trend (U.S. Department of Health and Human Services, 2011). In 2007, 661,000 children were adopted from foster care, representing 37% of all adopted children. Of foster care–adopted children, 23% were adopted by rela- tives, 40% were adopted by someone who knew them before the adoption (including relatives), and

69% were adopted by someone who was previously their foster parent (Vandivere et al., 2009). Because these children were removed from their homes due to abuse or neglect, they are more likely than other children, and even than those adopted through dif- ferent means, to have special health care needs—in 2007 54% had special needs.

In 2007, about 677,000 or 38% of adopted chil- dren were adopted privately from sources other than foster care. Of these, 41% were adopted by relatives and 44% were adopted by someone who knew them before the adoption (including rela- tives). Almost one-third of these children have spe- cial health care needs. The majority of children adopted privately in the United States were placed with their adoptive family as newborns or when they were younger than 1 month old (62%).

International adoptions increased from about 15,700 in 1999 to about 23,000 children in 2004. Since 2004, they have been steadily decreasing to 9,300 in 2011 due to stricter laws and regulations

Family Demography: Continuity and Change in North American Families 49

BOX 2-2 Three Primary Forms of Adoption in the United States

Foster Care Adoption Children adopted from foster care are those who were removed from their families due to their families’ inability or unwillingness to provide appropriate care and were placed under the protection of the state by the child protective services system. Public child welfare agencies oversee such adoptions, although they sometimes contract with private adoption agencies to perform some adoption functions.

Private Domestic Adoption These children were adopted privately from within the United States and were not part of the foster care system at any time before their adoption. Such adoptions may be arranged independently or through private adoption agencies.

International Adoption This group includes children who originated from coun- tries other than the United States. Typically, adoptive parents work with private U.S. adoption agencies, which coordinate with adoption agencies and other entities in children’s countries of origin. Changes in international adoption laws have made it more difficult to adopt children from abroad. Starting in 2008, the Hague Convention on Protection of Children and Co-operation in Respect of Intercountry Adoption has been regulating adoptions from several countries. Its purpose is to protect

children and to ensure that placements made are in the best interests of children. For adoptions from countries not part of the Hague Convention, U.S. law dictates that children have to be orphans in order to immigrate into the United States. The Hague Convention seems to have contributed to the decrease in international adoptions. For example, in 2007 24% of all international adoptions of children under age 18 were from Guatemala, but in March 2008, the U.S. Department of State announced that it would not process Guatemalan adoptions until fur- ther notice, due to concerns about the country’s ability to adhere to the guidelines of the Hague Convention. Addi- tionally, in 2008, Guatemala stopped accepting any new adoption cases (U.S. Department of State, 2011).

Other countries have also implemented stricter regula- tions for international adoptions. For example, as of May 2007, China enacted a rigorous policy requiring adoptive parents be married couples between the ages of 30 and 50 with assets of at least $80,000 and in good health (including not being overweight). In November 2012 a bilateral adoption agreement between the United States and Russia increased safeguards for and monitoring of Russian children adopted by U.S. parents (U.S. Department of State, 2011). In addition, China and other countries, such as Russia and Korea, are attempting to promote domestic rather than international adoption (Lee, 2007; Voice of Russia World Service in English, 2007).

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(U.S. Department of State, 2011). Internationally adopted children make up the smallest group, num- bering about 444,000 or 25% of all adopted chil- dren. Of these adopted children, 29% have special health care needs. More than 7 in 10 adopted chil- dren in 2011 came from just five countries—China (28%), Ethiopia (19%), Russia (10%), South Korea (8%), and the Ukraine (7%). In Canada, interna- tional adoptions have also slightly decreased from an average of 2,000 adoptions per year during the 1990s and early 2000s. In 2010, 1,946 children were adopted from abroad. In the same year, nearly 6 in 10 international adoptions to Canada came from China (24%), Haiti (9%), the United States (8%), Vietnam (7%), Ethiopia (6%), and Russia (5%) (Hilborn, 2011).

Since 2008, the Hague Convention on Protec- tion of Children and Co-operation in Respect of Intercountry Adoption has been regulating adop- tions from approximately 75 countries. The stricter law adopted by the Hague Convention has proba- bly contributed to the decline in international adoption (see Box 2-2). In the past several years, many countries have changed their adoption re- quirements, thus making it harder to adopt. All of these legal changes have reduced the number of international adoptions in the United States.

Social and demographic changes coupled with changing laws have altered the context of adoption. Recent developments in reproductive medicine, such as intrauterine insemination and in vitro fer- tilization, seem to have contributed to the decline in adoption in recent years by reducing the demand for adoption. At the same time, never-married mothers have become less likely to put their infants up for adoption—in 1973, 9% of births were placed for adoption compared to just 1% in the 1990s and 2000s, reducing the supply of infants for domestic adoptions (Jones, 2008).

According to a recent study conducted at the U.S. Department of Health and Human Services, overall, 87% of adopted children have parents who said they would “definitely” make the same deci- sion to adopt their child, knowing everything then that they now know about their child. More than 90% of adopted children ages 5 and older have par- ents who perceived their child’s adoption experi- ence as “positive” or “mostly positive” (Vandivere et al., 2009).

According to this study, overall, 40% of the adopted children are in transracial adoptions; either

one or both adoptive parents are of a different race, culture, or ethnicity than their child. The majority of adopted children have non-Hispanic white par- ents but are not themselves non-Hispanic white. Transracial adoptions are most common for chil- dren whose families adopted internationally. Over- all, about half of adopted children are male (49%)—33% of internationally adopted children are male, while 57% of children adopted from fos- ter care are male (Vandivere et al., 2009). Adopted children are less likely than biological children in the general population to live in households below the poverty line (12% compared with 18%). How- ever, nearly half of children adopted from foster care (46%) live in households with incomes no higher than two times the poverty threshold. Over two-thirds of adopted children (69%) live with two married parents; they are just as likely to do so as children in the general population (Vandivere et al., 2009).

The majority of adoptive children engage in en- richment activities with their families, and in fact they are more likely to have some of these positive experiences than all children in the population (Vandivere et al., 2009). As youngsters, adopted children are more likely than all children to be read to every day (68% compared with 48%), to be sung to or told stories every day (73% compared with 59%), and to participate in extracurricular activities as school-age children (85% compared with 81%). A small percentage of adopted children have par- ents who report parental aggravation (for example, feeling the child was difficult to care for, or feeling angry with the child). Parental aggravation is more common among parents of adopted children than among all parents (11% compared with 6%).

This socioeconomic and demographic portrait of adopted children has implications for family nursing. First, although most adoptive children fare well with regard to health, educational achievement, and social and cognitive develop- ment, those who are adopted through foster care are disproportionately disadvantaged. Second, be- cause most parents of adopted children do not share with them their genetic endowment and be- cause the medical histories of the biological par- ents are often unknown, diagnosis for these children can be more challenging than for biolog- ical children. Third, the substantial proportion of transracial adoptive families requires special atten- tion. For decades, adoptive parents who were of a

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different race than their child were taught to be color blind regarding their adoptive children and to raise them according to the culture of the par- ent. More recently, adoption social workers have encouraged adoptive parents to embrace the child’s culture of origin and to help their children develop positive racial and ethnic identities. As most of these parents are white, however, they may be unaware of the nuances of the culture the child is coming from and may not have the capacity to teach their children how to deal with bias and dis- crimination (Shiao, Tuan, & Rienzi, 2004). Nurses should be sensitive to these differences and help guide the parents in understanding how to help their children.

Finally, unlike biological families, many adoptive families emerge out of loss for all members—for example, foster parents who are not able to have bi- ological children; biological parents who are relin- quishing their children; and adoptive children who are losing or have lost their biological parents. This unique family form requires an adjustment period for all of those involved. Separations of adoptive children from biological parents at birth deprive children of the bioregulatory channels that exist be- tween a mother and her baby—from breathing, to respiration, to heart rate and blood pressure. Tak- ing away a baby at birth cuts off this regulation and may cause children to cry more often, become angry or confused, or behave badly simply because they do not understand the separation (Verrier, 1993). Nurses should be aware that unusual behav- iors such as these among adoptive children may not stem from illness or health-related causes.

Single Mothers How many single mothers are there? This turns out to be a more difficult question to answer from official statistics than it would first appear. Over time, it is easiest to calculate the number of single mothers who maintain their own residence. In the United States between 1950 and 2011, the number of such single-mother families increased from 1.3 million to 8.7 million (U.S. Census Bureau, 2011c). These estimates do not include single mothers living in other persons’ households but do include single mothers who are cohabitating with a male partner. The most dramatic increase was during the 1970s, when the number of single- mother families was increasing at 8% per year. The

average annual rate of increase slowed considerably during the 1980s and was near 0% after 1994 (Casper & Bianchi, 2002). By 2011, single mothers who maintained their own households accounted for 25% of all families with children, up from 6% in 1950 (U.S. Census Bureau, 2011c). Almost 1.4 million more single mothers lived in someone else’s house- hold, bringing the total number of single mothers to over 10 million (U.S. Census Bureau, 2011c). In 2011 in Canada, there were 1.2 million lone mothers and 328,000 lone fathers with children of any age liv- ing with them (Statistics Canada, 2012e).

Single mothers with children at home face a multitude of challenges. They usually are the pri- mary breadwinners, disciplinarians, playmates, and caregivers for their children. They must manage the financial and practical aspects of a household and plan for the family’s future. Many mothers cope remarkably well, and many benefit from financial support and help from relatives and from their children’s fathers.

Women earn less than men, on average, and be- cause single mothers are usually younger and less educated than other women, they are often at the lower end of the income curve. Never-married sin- gle mothers are particularly disadvantaged; they are younger, less well educated, and less often em- ployed than are divorced single mothers and mar- ried mothers. Single mothers often must curtail their work hours to care for the health and well- being of their children.

Despite the fact that the majority of American single mothers are not poor, they are much more likely to be poor than other parents. Single-parent families are officially defined as poor if they have incomes under the poverty line, which for a single mother with two children translates into an annual income of less than $18,123 in 2011. Overall, 20% of U.S. children lived in poverty in 2009. Children in two-parent families had the lowest rate at 13.3%, followed by children living in father-only families at 19.9%. Children in mother-only families had the highest poverty rate at 38.1%. Poverty and family structure are highly correlated with race in the United States. Children in black and Hispanic single-mother families exhibit the highest poverty rate at about 45% compared with white children in two-parent families, who have the lowest rate at 8.6% (Kreider & Ellis, 2011a).

The family income of children who reside with a never-married single mother is less than one-fourth

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that of children in two-parent families (Bianchi & Casper, 2000). Almost three of every five children who live with a never-married mother are poor. Mothers who never married are much less likely to get child support from the father than are mothers who are divorced or separated. Whereas 43% of di- vorced mothers with custody of children younger than 21 received some child support from the chil- dren’s father, fewer than 25% of never-married mothers reported receiving regular support from their child’s father (U.S. Census Bureau, 2010c).

Children who live with a divorced mother tend to be much better off financially than are children of never-married mothers. Divorced mothers are substantially better educated and more often em- ployed than are mothers who are separated or who never married. Even so, the average incomes of families headed by divorced mothers is less than half that of two-parent families.

In 2010, three million Canadians lived in low income and about 546,000 or 8.1% of children younger than 18 lived in low-income families (Statistics Canada, 2012c). Canadian lone-parent families with children younger than 18 are much more likely to have low incomes, and thus, more likely to be poor (First Call: BC Child and Youth Advocacy Coalition, 2011). Among children living in female lone-parent families, 187,000, or 21.8%, were low income, whereas the incidence of low income was 5.7% among children living in two- parent families (Statistics Canada, 2012c).

In the United States, single mothers with children in poverty are particularly affected by major welfare reform legislation, such as the Personal Responsibil- ity and Work Opportunity Reconciliation Act (PRWORA) (Box 2-3). President Clinton claimed in his 1993 State of the Union Address that the 1996 law would “end welfare as we know it,” and the changes embodied in PRWORA—time limits on welfare eligibility and mandatory job-training re- quirements, for example—seemed far-reaching (Hays, 2003). Some argued that this legislation would end crucial support for poor mothers and their chil- dren; several high-level government officials resigned because of the law. Others heralded PRWORA as the first step toward helping poor women gain con- trol of their lives and making fathers take responsi- bility for their children. Many states had already begun to experiment with similar reforms. The suc- cess of this program is open to dispute because it has been and continues to be such a political issue.

Why have mother-child families increased in number and as a percentage of North American families? Explanations tend to focus on one of two trends. First is women’s increased financial inde- pendence. More women entered the labor force and women’s incomes increased relative to those of men, and welfare benefits for single mothers expanded during the 1960s and 1970s. Women today are less dependent on a man’s income to support themselves and their children, and many can afford to live in- dependently rather than stay in an unsatisfactory relationship. Second, the job market for men has tightened, especially for less-educated men. As the North American economy experienced a restructur- ing in the 1970s and 1980s, the demand for profes- sionals, managers, and other white-collar workers expanded, whereas wages for men in lower-skilled jobs declined in real terms (Casper & Bianchi, 2002). Over the past two decades, this pattern has contin- ued due to technological advances and outsourcing displacing manufacturing and other lower-skilled jobs (Bianchi et al., 2012). Men still earn more than women, on average, but the earnings gap narrowed steadily between the 1970s and 2000 as women’s earnings increased and men’s earnings remained flat or declined. In the past decade, the gender-earnings gap has been relatively constant because both men’s and women’s average earnings have stagnated. In 2011 in the United States, full-time, year-round female workers earned 77 cents for every dollar earned by full-time, year-round male workers (DeNavas-Walt, Proctor, & Smith, 2012).

In the early years of the 20th century, higher mor- tality rates made it more common for children to live with only one parent (Uhlenberg, 1996). As declining death rates reduced the number of widowed single parents, a counterbalancing increase in single-parent families occurred because of divorce. For example, at the time of the 1960 Census, almost one-third of American single mothers living with children younger than 18 were widows (Bianchi, 1995). As di- vorce rates increased precipitously in the 1960s and 1970s, most single-parent families were created through divorce or separation. Thus, at the end of the 1970s, only 11% of American single mothers were widowed and two-thirds were divorced or sep- arated. In 1978, about one-fifth of single American mothers had never married but had a child and were raising that child on their own (Bianchi & Casper, 2000). By 2011, 46.5% of single mothers had never married (U.S. Census Bureau, 2011k).

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Family Demography: Continuity and Change in North American Families 53

BOX 2-3 Welfare Reform in the United States

Federal and state programs in the United States to aid low-income families have been transformed during the past two decades. The 1996 PRWORA was the legislative milestone at the federal level.

■ PRWORA replaced the Aid to Families With Dependent Children program, an entitlement for poor families, with a program of block grants to the states called Temporary Assistance to Needy Families (TANF).

■ It requires states to impose work requirements on at least 80% of TANF recipients.

■ It forbids payments to single mothers younger than 18 unless they live with an adult or in an adult-supervised situation.

■ It set limits of 60 months on TANF for any individual recipient (and 22 states have used their option to impose shorter lifetime limits).

■ It gives states more latitude to let TANF recipients earn money or get child support payments without reduction of benefits and to use block grants for child care.

Welfare-reform proponents often supported efforts to “make work pay,” as well as to discourage long-term de- pendence on welfare. The Earned Income Tax Credit, for example, was expanded several times during the 1980s and 1990s and now provides twice as much money to low-income families, whether single- or two-parent families. Funding for child care was also expanded during the decade, though child care remains a problem for low-income working families in most places.

PRWORA accelerated a decline in welfare caseloads throughout the country. Because of a concern that former welfare recipients entering the workforce would lose in- surance coverage through Medicaid for their children, the 1997 Balanced Budget Act set up the new State Child Health Insurance Program (SCHIP), providing federal money to states in proportion to their low-income population and recent success in reducing the proportion of uninsured children.

Lack of health insurance remains an important concern for children in the United States, however. The Census

Bureau estimated that in 2011 about 1 of every 10 chil- dren in the United States was not covered by any health insurance (and one in five adults between ages 18 and 64 were uninsured) (DeNavas-Walt et al., 2012).

In 1996, Congress also made the following state- ments: (1) Marriage is the foundation of a successful society. (2) Marriage is an essential institution of a suc- cessful society which promotes the interests of children. To support healthy marriage, in conjunction with TANF, the Deficit Reduction Act of 2005 was implemented pro- viding $150 million per year of funding to support healthy marriage and responsible fatherhood promotion. The goal of the Healthy Marriage Initiative (HMI) is to help couples, “who have chosen marriage for themselves, gain greater access to marriage education services, on a voluntary basis, where they can acquire the skills and knowledge necessary to form and sustain a healthy marriage” (U.S. Department of Health and Human Services, 2012).

Key requirements of the law specify that HMI funds may be used for competitive research and demonstra- tion projects to test promising approaches to encourage healthy marriages and promote involved, committed, and responsible fatherhood by public and private entities and also for providing technical assistance to states and tribes:

■ Applicants for funds must commit to consult with experts in domestic violence; applications must describe how programs will address issues of domestic violence and ensure that participation is voluntary.

■ Healthy marriage promotion awards must be used for eight specified activities, including marriage education, marriage skills training, public advertising campaigns, high school education on the value of marriage, and marriage mentoring programs.

Not more than $50 million each year may be used for activities promoting fatherhood, such as counseling, mentoring, marriage education, enhancing relationship skills, parenting, and activities to foster economic stability (U.S. Department of Health and Human Services, 2012).

The remarkable increase in the number of single- mother households with women who have never married was driven by a dramatic shift to childbear- ing outside marriage. The number of births to unmarried women grew from less than 90,000 per year in 1940 to nearly 1.6 million per year in 2010 (Martin et al., 2012). Less than 4% of all births in 1940 were to unmarried mothers com- pared with 41% in 2010. The rate of nonmarital

births—the number of births per 1,000 unmarried women—increased from 7.1 in 1940 to 47.6 in 2010. The nonmarital birth rate peaked in 1994 at 46.2, leveled out in the latter 1990s, and has in- creased slightly since the mid-2000s (Bianchi & Casper, 2000; Martin et al., 2012). Births to unmar- ried women have increased in Canada as well, from 12.8% in 1980 to 27.3% of all births in 2007 (U.S. Census Bureau, 2012).

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The proportion of births that occur outside mar- riage is even higher in some European countries than in the United States and Canada. But unmar- ried parents in European countries and Canada are more likely to be living together with their biolog- ical children than are unmarried parents in the United States (Heuveline, Timberlake, & Fursten- berg, 2003). In the United States, the tremendous variation in rates of unmarried childbearing among population groups suggests that there may be a con- stellation of factors that determine whether women have children when they are not married. In 2010, the percentage of births to unmarried mothers was the highest for blacks at 73%, followed by Native Americans (66%), Hispanics (53%), and white non- Hispanics (29%). Asian and Pacific Islanders re- ported the lowest percentage at 17% (Martin et al., 2012, Tables 13 and 14). Overall, 25% of all family groups with children under 18 are maintained by single mothers. The percentage of mother-only family groups is much higher for African American families (52%) than for Hispanic (28%), white non-Hispanic (19%), and Asian (12%) families (U.S. Census Bureau, 2011m).

Single-mother families present challenges for family health care nurses providing care to this vul- nerable group. Single mothers today are younger and less educated than they were a few decades ago. This presents problems because these mothers have less experience with the health care system and are likely to have more difficulty reading directions, filling out forms, communicating effectively with doctors and nurses, and understanding their care instructions. In the U.S., these mothers are also more likely to be poor and uninsured, making it less likely they will seek care and more likely they will not be able to pay for it. Consequently, when the need arises, these women are more likely to resort to emergency rooms for noncritical illnesses and injuries. Time is also in short supply for single mothers. With the advent of welfare reform in the United States, more of them are working, which conceivably reduces the time they used in the past to care for themselves and their chil- dren (see Box 2-3). Moreover, although many of these mothers can rely on their families for help, they are apt to have tenuous ties with their children’s fathers.

Fathering A new view of fatherhood emerged out of the fem- inist movement of the late 1960s and early 1970s. The new ideal father was a co-parent who was

responsible for and involved in all aspects of his children’s care. The ideal has been widely accepted throughout North American society; people today, as opposed to those in earlier times, believe that fathers should be highly involved in caregiving (Hernandez & Brandon, 2002). In the U.S. and Canada, although mothers still spend nearly twice as much time caring for children than fathers do, fathers are spending more time with their children and are doing more housework than in earlier decades. In 1998, married fathers in the United States reported spending an average of 4 hours per day with their children, compared with 2.7 hours in 1965 (Bianchi, 2000). In 2010, in Canada, fathers spent on average 24.4 hours per week (3.5 hours per day) taking care of children (Statistics Canada, 2012f). These estimates vary by employment status of both parents and by the children’s age. Fathers spend more time caring for children when mothers are employed and when children are young.

At the same time, other trends increasingly re- move fathers from their children’s lives. When the mother and father are not married, for example, ties between fathers and their children often falter. Fa- thers’ involvement with children differs by marital status and living arrangements. Among fathers re- siding with their children, biological married fathers spend more time with their children, fol- lowed by fathers in cohabitating relationships. Step- fathers exhibit the lowest level of involvement among all resident fathers. Nonresidential fathers exhibit the lowest involvement in child rearing. They also provide less financial support to their children (Hofferth, Pleck, Stueve, Bianchi, & Sayer, 2002). Family demographer Frank Furstenberg (1998) used the label “good dads, bad dads” to de- scribe the parallel trends of increased commitment to children and child rearing on the part of some fathers at the same time that there seems to be less connection to and responsibility for children on the part of other fathers.

Fathers’ involvement is associated with improved child well-being, including better cognitive devel- opment, fewer behavioral problems, and better emo- tional health. However, fathers’ involvement and child support significantly decrease when parents separate, especially if the father or mother forms a new family or if the custodial mother poses obstacles for a father’s contact with his children (Carlson & McLanahan, 2010). As a result, union disruption not only hurts children’s cognitive and emotional well- being, but also reduces children’s contact with

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fathers, decreasing the parental and financial re- sources available to children (Amato & Dorius, 2010). Nonetheless, when fathers re-partner and ac- quire stepchildren, they usually assume new respon- sibilities and provide for their stepchildren, a fact that is often overlooked when assessing fathers’ involvement (Hernandez & Brandon, 2002).

How many years do men spend as parents? De- mographer Rosalind King (1999) estimated the number of years that American men and women will spend as parents of biological children or stepchil- dren younger than 18 if the parenting patterns of the late 1980s and early 1990s continue throughout their lives; her estimations have not been refuted to date. Almost two-thirds of the adult years will be “child-free” years in which the individual does not have biological children younger than 18 or respon- sibility for anyone else’s children. Men will spend, on average, about 20% of their adulthood living with and raising their biological children, whereas women will spend more than 30% of their adult lives, on av- erage, raising biological children. Whereas women, regardless of race, spend nearly all of their parenting years rearing their biological children, men are more likely to live with stepchildren or a combination of their own children and stepchildren. Among men in the United States, white men will spend about twice as much time living with their biological children as African American men.

One of the new aspects of the American family in the last 50 years has been an increase in the num- ber of single fathers. Between 1950 and 2011, the number of households with children that were maintained by an unmarried father increased from 229,000 to 2.2 million (U.S. Census Bureau, 2011c). During the 1980s and 1990s, the percentage of single-father households nearly tripled for white and Hispanic families and doubled for African American families (Casper & Bianchi, 2002). Re- cent demographic trends in fathering have changed the context of family health care nursing. The growth in single fatherhood and joint custody, to- gether with the increased tendency for fathers to perform household chores, means that family health care nurses are more likely today than in decades past to be interacting with the fathers of children.

Unmarried Parents Living Together In the United States, changes in marriage and co- habitation tend to blur the distinction between one- parent and two-parent families. The increasing

acceptance of cohabitation as a substitute for mar- riage, for example, may reduce the chance that a premarital pregnancy will lead to marriage before the birth (Casper & Bianchi, 2002). Greater shares of children today are born to a mother who is not currently married than in previous decades. Some of those children are born to cohabitating parents and begin life in a household that includes both their biological parents. Data from the 2006–2010 National Survey of Family Growth show that 58% of recent nonmarital births were to cohabitating women (Martin et al., 2012). Cohabitation in- creased for unmarried mothers in all race and ethnic groups, but especially among whites. Cohabitating couples account for up to 13% of all single-parent family groups. In 2011, 13% of white single parents were actually cohabitating compared with 9% of black, 13% of Asian, and 19% of Hispanic single parents (U.S. Census Bureau, 2011d). In 2011 in Canada, 17% of all families consisted of common- law couples, and among families with children under age 14, 14% were common-law families (Statistics Canada, 2012e).

Same-Sex Couple Families An increasing number of same-sex couples are now raising children. In the United States, nearly 17% of same-sex couples had children in 2010 (author’s own calculations based on Lofquist et al., 2012). In Canada, 9.4% of same-sex couples were raising chil- dren in 2011 (Statistics Canada, 2012e). Same-sex couples, especially gay male couples, face consider- able obstacles and need to overcome negative public attitudes to become parents (Biblarz & Savci, 2010). Female couples are more likely than male couples to be parents (Statistics Canada, 2012e). Many same-sex couples bring children into their house- holds from previous heterosexual relationships; oth- ers become parents through the use of assisted reproductive technology and surrogacy, yet an in- creasing number of them become parents through adoption as same-sex couples obtain legal adoption rights (Biblarz & Savci, 2010; Greenfeld, 2007).

Although some people have raised concerns about the parenting styles of same-sex parents and the potential negative effect for children’s out- comes and well-being, recent research has found that, for the most part, the parental skills of same- sex couples are comparable to if not better than those of heterosexual couples (Biblarz & Savci, 2010). This finding is partly explained by the fact

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that although many same-sex couples are very eager to become parents, they face several obstacles that require them to invest more time, money, and effort to achieve this goal. Their higher initial in- vestments make them more likely to devote a great deal of time to their children when they finally become parents (Biblarz & Savci, 2010).

Research on children’s outcomes has focused on different dimensions of well-being, including psy- chological well-being, emotional development, so- cial behavior, and school performance. Overall, these studies have found that children of same-sex parents fare relatively as well, if not better, com- pared with children raised by heterosexual couples. The gender of the child is an important moderat- ing factor. Sons of same-sex couples are more likely to experience disapproval from their peers and face greater homophobic teasing than girls; boys may be at greater risk of experiencing emotional dis- tress. This effect seems to depend on the level of social tolerance in their surrounding environments (Biblarz & Savci, 2010).

Nurses and health workers should be aware that same-sex couples often face particular challenges to safeguarding their well-being and that of their children. Although children raised by same-sex couples generally exhibit similar outcomes and lev- els of well-being, these children may be more sen- sitive to judgmental attitudes of individuals with whom they interact, including health workers.

Stepfamilies Stepfamilies are formed when parents bring to- gether children from a previous union. By contrast, remarriages or cohabitating unions in which nei- ther partner brings children into the marriage are conceptualized and measured similarly to first mar- riages. The U.S. Census Bureau uses the term blended families to denote families with children that are formed when remarriages occur or when chil- dren living in a household share only one or no biological parents. The presence of a stepparent, stepsibling, or half-sibling designates a family as blended; these families can include adoptive chil- dren who are not the biological child of either par- ent if there are other children present who are not related to the adoptive child. In 2009, 13.3% of households with children under 18 were blended- family households, numbering 5.3 million (Kreider & Ellis, 2011a). Almost 16% of U.S. children

(11.7 million) lived in blended families in 2009. Blended families were the least common among Asian children (7%) and the most common among black and Hispanic children (17% each). Although the number of children living in blended families has increased by almost 2 million since 1991, the percentage increase has been negligible (from 15% to 16%) (Furukawa, 1994; Kreider & Ellis, 2011a). In 2011, the Census of Population in Canada iden- tified stepfamilies for the first time. Nearly 13% of couple families with children were stepfamilies, and almost 10% of children aged 14 and under were living in stepfamilies in 2011 (Statistics Canada, 2012g).

Parental and financial responsibilities for biolog- ical parents are upheld by law, customs, roles, and rules that provide a cultural map of sorts for parents to follow in raising their children. Because no such map is available for stepfamilies, stepparents’ roles, rules, and responsibilities must be defined, negoti- ated, and renegotiated by stepparents. Through these negotiations, many different types of step- families are formed, resulting in a variety of con- figurations and different patterns of everyday living. The ambiguity surrounding roles in step- families and the lack of a shared family history and kinship system provide opportunities to build new traditions and family rituals; however, they also open the door for greater conflict. Consider the following scenarios.

When asked by researchers, members of families who are all related by either blood or partnership (marriage or cohabitation) can very easily tell you and agree upon who is in their family. By contrast, members within stepfamilies often do not share a common definition of who is included in their fam- ily. Common omissions include stepchildren, bio- logical children not living in the household, biological parents not living in the household, and stepparents (Furstenberg & Cherlin, 1991). Even biological siblings can have different ideas regarding who they consider to be family members depending on the degree of closeness they feel toward steppar- ents, biological parents, biological siblings, half- siblings, and stepsiblings, especially if the biological siblings are living in different households; a girl liv- ing with her biological mother and stepfather may consider her brother living with his biological father and a stepmother as a separate family.

Negotiations must occur with ex-spouses or ex- partners, as well as with former in-laws. Researchers

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have found that the ex-spouse relationship can play an important role in the well-being of stepfamilies (Golish, 2003) and may affect the relationship be- tween the new stepparents, especially in the begin- ning of the relationship. Couples’ relationships in stepfamilies and remarriages are informed and shaped by experiences in previous unions, leading to increased expectations in the remarriage. Remar- ried women expect and have more say in decision making than women in first marriages. In stepfam- ilies, the division of labor in the household is more egalitarian between spouses, as are economic roles and responsibilities (Allen, Baucom, Burnett, Epstein, & Rankin-Esquer, 2001).

Step-relationships in particular are often weak or ambivalent, and stress arises around various is- sues such as perceptions of playing favorites, or jealousy among biological children, of former spouses, and of stepchildren toward stepparents. These tensions arise because in some families step- parents are not viewed by stepchildren as real par- ents (Furstenberg & Cherlin, 1991). The level of conflict also depends on the age of children, in- creasing as children approach adolescence. Unlike in biological families where the role of parent emerges with the birth of the child (ascribed), step- parent roles must be earned (achieved). As a result, discipline in stepfamilies is often a problem. Addi- tionally, it is more difficult to be a stepparent than a biological parent because new family cultures are being developed.

Like children growing up in single-parent fam- ilies, children with stepparents have lower levels of well-being than children growing up with biologi- cal parents (Coleman, Ganong, & Fine, 2000). Thus, it is not simply the presence of two parents, but the presence of two biological parents that seems to promote children’s healthy development. Despite these challenges, positive changes can occur when stepfamilies are formed. For example, a stepfather’s income can compensate for the neg- ative economic slide that tends to occur for di- vorced mothers, and a stepparent can alleviate the demands of single parenting (Smock, Manning, & Gupta, 1999).

Because stepfamilies comprise a significant pro- portion of families with children, nurses are likely to deal with parents whose roles and responsibili- ties are not well defined and with children who have behavioral problems, especially among re- cently formed blended families. Obtaining legal

authorization for medical procedures can be chal- lenging when legal obligations are unclear. Family nurses should take care to identify which parent(s) have legal responsibility for medical decision mak- ing. Health care workers should be aware that they may also need to notify nonresidential parents when their children require medical attention as these parents may share the legal right to make medical decisions.

Grandparents One moderating factor in children’s well-being in single-parent families can be the presence of grand- parents in the home. Although the image of single- parent families is usually that of a mother living on her own and trying to meet the needs of her young child or children, many single mothers live with their parents. For example, in the United States in 2011, about 12% of children of single mothers lived in the homes of their grandparents compared with 8% of children of single fathers (U.S. Census Bureau, 2011g). An additional 5.2% of children of single mothers had a grandparent living with them compared with 4.7% of children of single fathers. This is a snapshot at one point in time, however. A much higher percentage of single mothers (36%) live in their parents’ home at some point before their children are grown. African American single moth- ers with children at home are more likely than are others to live with a parent at some time.

Several studies have shown that the presence of grandparents has beneficial effects on chil- dren’s outcomes and can buffer some of the dis- advantages of living in a single-parent family (DeLeire & Kalil, 2002). This beneficial effect, however, seems to be more pronounced among whites than among African Americans, probably because white grandparents in the United States have more education and resources than black grandparents (Dunifon & Kowaleski-Jones, 2007). The involvement of grandparents in the lives of their children has even become an issue for court cases, as there have been several rulings in recent years on grandparents’ visitation rights. The 2000 U.S. Census included a new set of questions on grandparents’ support of grandchildren. Children whose parents cannot take care of them for one reason or another often live with their grandpar- ents. In 1970, 2.2 million, or 3.2% of all American children, lived in their grandparents’ households.

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By 2011, this number increased to nearly 5 million, or 6.6% of all American children (U.S. Census Bureau, 2011f). Since the Great Recession in 2008 the number of children living with grand- parents increased by 14%, from 4.3 million in 2008 to nearly 5 million in 2011. In 2011 in Canada, 4.8% of children aged 0 to 14 resided with at least one grandparent, up from 3.3% in 2001 (Statistics Canada, 2012e). In addition, in 2010 in the United States, grandparents were the regular child care providers for 15% of grade- schoolers and 23% of preschoolers (U.S. Census Bureau, 2010a, 2010b).

The prevalence of grandparent families is a re- sult of demographic factors, socioeconomic con- ditions, and cultural norms. Increases in life expectancy have expanded the supply of potential kin support across generations, resulting in more multigenerational households. At the same time, changes in work and family life have increased par- ents’ need for child care, which, coupled with pressing economic circumstances, has made multi- generational households a strategic symbiotic arrangement, especially among single-mother, low-income, and immigrant families (Glick & Van Hook, 2002). Grandparents often provide finan- cial, emotional, child care, and residential support and, in turn, receive emotional and physical sup- port (Bengtson, Giarrusso, Mabry, & Silverstein, 2002). Nonetheless, after practical and economic factors are taken into account, racial and ethnic differences in the prevalence of grandparent households remain. Strong kinship ties and family norms also seem to explain the prevalence of grandparent households, especially among African American, Native American, Hispanic, and immi- grant families (Florian & Casper, 2011; Haxton & Harknett, 2009). Thus, norms stressing familial obligations may also be an important factor ex- plaining differences in the formation of grandpar- ent families.

Emerging research reveals that grandparents play an important role in multigenerational house- holds, which is at odds with the traditional image of grandparents as family members who themselves require financial and personal support. Although early studies assumed that financial support flowed from adult children to their parents, more recent research suggests that the more common pattern is for parents to give financial support to their adult children (Bengtson, 2001; Bianchi et al., 2008). In

multigenerational households, it is more common for adult children and grandchildren to move into a house that grandparents own or rent. In 2007 in the United States, 64% of multigenerational house- holds were headed by grandparents (Florian & Casper, 2011). Nearly 37% of all the grandparent- maintained families were skipped generation, that is, grandparents living with their grandchildren without the children’s parents (authors’ calculations based on data from U.S. Census Bureau, 2011f). Nearly 3.1% or 413,490 of all households in Canada contained a grandparent in 2011. Of these households, 53% also contained both parents, 32% contained a lone parent (mostly the mother), and 12% were skipped-generation households com- prised of children residing with their grandparents without a parent (Statistics Canada, 2012e).

Grandparents who own or rent homes that in- clude grandchildren and adult children are younger, healthier, and more likely to be in the labor force than are grandparents who live in a residence owned or rented by their adult children. Grandparents who maintain multigenerational households are also bet- ter educated (more likely to have at least a high- school education) than are grandparents who live in their children’s homes (Casper & Bianchi, 2002). Nevertheless, supporting grandchildren can drain grandparents’ resources. A recent study indicated that grandfathers who are primary caretakers of grandchildren are at higher risk of experiencing poverty if they are in a skipped-generation house- hold, are ethnic minorities, or are not married (Keene, Prokos, & Held, 2012).

The structure of grandparent households differs by nativity. Although co-residential grandparent families are more common among immigrant fam- ilies, immigrant grandparent families are less likely to be maintained by grandparents and less likely to be skipped generation. Thus, while the flow of sup- port in native-born multigenerational families more often runs from older to younger genera- tions, in immigrant grandparent families support more often flows from adult children to their older parents (Florian & Casper, 2011).

Parents who support both dependent children and dependent parents have been referred to as the “sandwich” generation, because they provide eco- nomic and emotional support for both the older and younger generations. Although grandparents in parent-maintained households tend to be older, in poorer health, and not as likely to be employed,

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many are in good health and are, in fact, working (Bryson & Casper, 1999). These findings suggest that, at the very least, the burden of maintaining a co-residential “sandwich family” household may be somewhat overstated in the popular press. Many of the grandparents who are living in the houses of their adult children are capable of contributing to the family income and helping with the supervi- sion of children.

Many grandparents step in to assist their chil- dren in times of crisis. Some provide financial assistance or child care, whereas others are the pri- mary caregivers for their grandchildren. Although grandmothers comprise the majority of grandpar- ent caregivers, a sizable number of grandfather caregivers exist who are likely to experience more challenges than grandmothers as primary care- givers (Keene et al., 2012).

The recent increase in the numbers of grand- parents raising their grandchildren is particularly salient to health care providers because both grandparents and grandchildren in this situation often suffer significant health problems (Casper & Bianchi, 2002). Researchers have documented high rates of asthma, weakened immune systems, poor eating and sleeping patterns, physical dis- abilities, and hyperactivity among grandchildren being raised by their grandparents (Kelley, Whitley, & Campos, 2011; Minkler & Odierna, 2001). Grandparents raising grandchildren tend to be in poorer health than their counterparts. They have higher levels of stress, higher rates of anxiety and depression, poorer self-rated health, and more multiple chronic health problems, especially if the grandchildren exhibit behavioral problems (Leder, Grinstead, & Torres, 2007). Other studies suggest, however, that these negative outcomes may not necessarily be a result of caring for grandchildren; instead, they may reflect grandpar- ents’ preexisting health conditions and economic circumstances before they began to raise their grandchildren (Hughes, Waite, LaPierre, & Luo, 2007). It is important to keep in mind that, al- though many of the grandparents who live in their adult children’s homes are in good health, some of these grandparents require significant care. Nurses should also be aware that there are also adult children who provide care for their parents who are not living with them. Adults who provide care for both generations are likely to face both time and money concerns.

SUMMARY

Families change in response to economic conditions, cultural change, and shifting demographics, such as the aging of the population and immigration. North America has gone through a particularly tumultuous period in the last few decades, resulting in rapid changes in family structure, functions, and processes. Families have grown more diversified.

■ More single-mother families, single-father families, same-sex parent families, and fami- lies with both parents in the labor force exist today than in the past. This translates into less time for parents to take care of the health needs of family members.

■ Single mothers may find it particularly chal- lenging to meet the health care needs of their families because they tend to have the least time and money to do so.

■ More fathers are taking responsibility for being primary caretakers of their children and will be more likely than in the past to be the parent with whom nurses will interact.

■ Changes in childbearing behaviors have also altered family life.

■ Persistent levels of below replacement fertil- ity in Canada have raised concerns about the future contraction of the population, which would reduce the tax base to support children and the growing number of senior citizens.

■ As more couples delay childbearing, they are more likely to seek assistance to conceive from health care providers.

■ The growing number of same-sex couples who aspire to become parents has further increased the demand for assisted reproduc- tive technology.

■ Nurses should be aware that this is a stressful time in families’ lives, as more adults and children live in nontraditional family forms.

■ Nurses also should be aware that the roles of parents and responsibility for children in these households may be ambiguous.

■ Many North American families adopt children. These children are likely to face a period of adjustment and are also more likely than other children to have special health care needs.

■ More grandparents are raising their grand- children, and these grandchildren may suffer

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from more health problems compared with other children.

■ Many families maintained by grandparents are in poverty, and many of the grandparents in these families suffer from poor health themselves. Nurses will increasingly be likely to provide care to grandparent families, and they should be aware of the unique health and financial challenges these families face.

■ As mortality rates at older ages continue to improve, and as baby boomers move into their retirement years, the proportions of the population of elderly persons will continue to increase. This demographic shift will in- crease the need for nurses who specialize in caring for elderly persons.

■ More adults will have children and parents for whom they must care, increasing the need for care in both directions, that of the younger and the older.

■ Working with health care needs of both gen- erations will be a challenge for health care professionals, especially nurses who are on the front line in most health care systems.

■ Today, more North Americans come from other countries than in the past.

■ Health care providers will be serving a more ethnically and culturally diverse population.

■ Many of these individuals speak a language other than English.

■ Economics and family relationships remain intertwined. Family issues growing in impor- tance include balancing paid work with child rearing, income inequality between men and women, fathers’ parenting roles, the expected increase in the number of frail elderly persons, and intergenerational relationship changes due to the increase in life expectancy.

■ The Great Recession has put economic strain on many families, increasing the likelihood of stress-related illness and decreasing the abil- ity to afford appropriate care.

Families have been amazingly adaptive and re- silient in the past; one would expect them to be so in the future.

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Suggested Readings Baker, M. (Ed). (2009). Families: Changing trends in Canada

(6th ed.). Toronto, Canada: McGraw-Hill Ryerson. Bianchi, S. M., & Casper, L. M. (2005). Explanations of family

change: A family demographic perspective. In V. L. Bengtson, A. C. Acock, K. R. Allen, P. Dilworth-Anderson, & D. M. Klein (Eds.), Sourcebook of family theory and research (pp. 93–117). Thousand Oaks, CA: Sage.

Brown, S. L. (2004). Family structure and child well-being: The significance of parental cohabitation. Journal of Marriage and Family, 66(2), 351–367.

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The decade in review. (2010). Journal of Marriage and Family, 72(3), 401–803.

Edin, K., & Kefalas, M. (2005). Promises I can keep: Why poor women put motherhood before marriage. Berkeley, CA: University of California Press.

Ellwood, D. T., & Jencks, C. (2004). The uneven spread of single-parent families: What do we know? Where do we look for answers? In K. M. Neckerman (Ed.), Social inequality (pp. 3–77). New York, NY: Russell Sage Foundation.

Farley, R., & Haaga, J. (Eds.). (2004). The American people. New York, NY: Russell Sage Foundation.

Federal Interagency Forum on Aging-Related Statistics. (2012). Older Americans 2012: Key national indicators of well-being. Washington, DC: U.S. Government Printing Office.

Federal Interagency Forum on Child and Family Statistics. (2012). America’s children: Key national indicators of well-being, 2012. Washington, DC: U.S. Government Printing Office.

Jacobs, J., & Gerson, K. (2004). The time divide: Work, family, and gender inequality. Cambridge, MA: Harvard University Press.

Kennedy, S., & Bumpass, L. (2008). Cohabitation and children’s living arrangements: New estimates from the United States. Demographic Research, 19(47), 1663–1692.

McLanahan, S. (2004). Diverging destinies: How children are faring under the second demographic transition. Demography, 41(4), 607–627.

McLanahan, S. (2009). Fragile families and the reproduction of poverty. Annals of the American Academy of Political and Social Science, 621, 111–131.

National Center for Health Statistics. (2001). Healthy people 2000 final review. Hyattsville, MD: Public Health Service.

Nock, S. L. (1998). Marriage in men’s lives. New York, NY: Oxford University Press.

Pettit, B., & Hook, J. (2009). Gendered tradeoffs: Family, social policy, and economic inequality in twenty-one countries. New York, NY: Russell Sage.

Stewart, S. D. (2006). Brave new stepfamilies: Diverse paths. Toward stepfamily living. Thousand Oaks, CA: Sage Publications.

Waite, L. J., Bachrach, C. A., Hinden, M., Thomson, E., & Thornton, A. T. (2000). The ties that bind: Perspectives on marriage and cohabitation. New York, NY: Aldine de Gruyter.

Contacts ■ Child Trends: www.childtrends.org ■ Designing New Models for Explaining Family Change and

Variation: www.soc.duke.edu/~efc/ ■ Federal Interagency Forum on Aging-Related Statistics:

www.agingstats.gov ■ Federal Interagency Forum on Child and Family Statistics:

www.childstats.gov ■ Fragile Families and Child Wellbeing Study: www.fragilefamilies.

princeton.edu/ ■ Kaiser Commission on Medicaid and the Uninsured: www.kff.org ■ Kids Count: The Annie E. Casey Foundation: www.aecf.org/

kidscount

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■ National Center for Health Statistics, U.S. Department of Health and Human Services, Centers for Disease Control and Prevention: www.cdc.gov/nchs

■ National Institute on Aging, National Institutes of Health: www.nia.nih.gov

■ National Center for Marriage and Family Research: ncfmr.bgsu.edu/ ■ National Institute of Child Health and Human Development,

National Institutes of Health: www.nichd.nih.gov ■ The National Longitudinal Study of Adolescent Health:

www.cpc.unc.edu/projects/addhealth

■ Population Reference Bureau: www.prb.org ■ Statistics Canada/Statistique Canada: www.statcan.gc.ca ■ U.S. Census Bureau: www.census.gov ■ Welfare, Children, & Families: A Three City Study:

web.jhu.edu/threecitystudy/index.html

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67

Theoretical Foundations for the Nursing of Families

c h a p t e r 3

Joanna Rowe Kaakinen, PhD, RN

Shirley May Harmon Hanson, PhD, PMHNP/ARNP, FAAN, CFLE, LMFT

C r i t i c a l C o n c e p t s

■ Theories inform the practice of nursing. Practice informs theory and research. Theory, practice, and research are interactive, and all three are critical to the profession of nursing and family care.

■ The major purpose of theory in family nursing is to provide knowledge and understanding that improves the quality of nursing care of families.

■ By understanding theories and models, nurses are prepared to think more creatively and critically about how health events affect family clients. Theories and models provide different ways of comprehending issues that may be affecting families, and offer choices for action.

■ The theoretical/conceptual frameworks and models that provide the foundations for nursing of families have evolved from three major traditions and disciplines: family social science, family therapy, and nursing.

■ No single theory, model, or conceptual framework adequately describes the complex relationships of health events on family structure, function, and process.

■ Nurses who use an integrated theoretical approach build on the strengths of families in creative ways. Nurses who use a singular theoretical approach to working with families limit the possibilities for families they serve. By integrating several theories, nurses acquire different ways to conceptualize problems, thus enhancing thinking about interventions.

By understanding theories and models, nurses are prepared to think creatively and critically about how health events affect the family client. The re- ciprocal or interactive relationship between theory, practice, and research is that each aspect informs the other, thereby expanding knowledge and nurs- ing interventions to support families. Theories and models extend thinking to higher levels of under- standing problems and circumstances that may be

affecting families and, thereby, offer more choice and options for nursing interventions.

Currently, no single theory, model, or concep- tual framework adequately describes the complex relationships of family structure, function, and process. Nor does one theoretical perspective give nurses a sufficiently broad base of knowledge and understanding to guide assessment and interven- tions with families. No one theoretical perspective

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is better, more comprehensive, or more correct than another (Doane & Varcoe, 2005; Kaakinen & Hanson, 2010). The goal for nurses is to have a deep understanding of the stresses that families ex- perience when their family clients have a health event and to support and implement family inter- ventions based on theoretical perspectives that best match the needs identified by the family.

Many theoretical approaches exist to under- standing families. The purpose of this chapter is to demonstrate how families who have members experiencing a health event are conceptualized dif- ferently depending on the theoretical perspective. In this chapter, nurses seek different data depending on which theory is being used, both to understand the family experience and to determine the inter- ventions offered to the family to help bring them back to a state of stability.

RELATIONSHIP BETWEEN THEORY, PRACTICE, AND RESEARCH

In nursing, the relationship of theory to practice constitutes a dynamic feedback loop rather than a static linear progression. Theory, practice, and re- search are mutually interdependent. Theory grows out of observations made in practice and is tested by research; then tested theory informs practice, and practice, in turn, facilitates the further refine- ment and development of theory. Figure 3-1 depicts the dynamic relationship between theory, practice, and research.

Theories do not emerge all at once; they build slowly over time as data are gathered through prac- tice, observation, and analysis of evidence. Relating together the various concepts that emerge from observation and evidence occurs through a pur- poseful, thoughtful reasoning process. Inductive reasoning is a process that moves from specific pieces of information toward a general idea; it is thinking about how the parts create the whole. De- ductive reasoning goes in the opposite direction from inductive reasoning. Deductive reasoning is where the general ideas of a given theory generate more specific questions about what filters back into the cycle; it helps refine understanding of the theory and how to apply the theory to practice (Smith & Hamon, 2012; White & Klein, 2008).

Theories are designed to make sense of the world, to show how one thing is related to another and how together they make a meaningful pattern that can predict the consequences of certain clus- ters of characteristics or events. Theories are ab- stract, general ideas that are subject to rules of

68 Foundations in Family Health Care Nursing

This chapter begins with a brief review of the components of a theory and how the components contribute to the nursing of families. It then pres- ents five theoretical approaches for working with families, ranging from a broader to a more specific perspective:

■ Family Systems Theory ■ Developmental and Family Life Cycle Theory ■ Bioecological Theory ■ Chronic Illness Framework ■ Family Assessment and Intervention Model

The chapter utilizes a case study of a family with a member who is experiencing progressive multiple sclerosis (MS) to demonstrate these five different theoretical approaches to nursing care.

THEORY (Generalities)

PRACTICEInductive Reasoning

RESEARCH (Specifics)

Deductive Reasoning

FIGURE 3-1 Relationship between theory, practice, and research. (Adapted from Smith, S. R., Hamon, R. R., Ingoldsby, B. B., & Miller, J. E. [2008]. Exploring family theories [2nd ed.]. New York, NY: Oxford University Press.)

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organization. Theories provide a general frame- work for understanding data in an organized way, as well as showing us how to intervene. We live in a time when tremendous amounts of information are readily available and quickly accessible in mul- tiple forms. Therefore, theories provide ways to transform this huge volume of information into knowledge and to integrate/organize the informa- tion to help us make better sense of our world (White, 2005). Ideally, nursing theories represent logical and intelligible patterns that make sense of the observations nurses make in practice and en- able nurses to predict what is likely to happen to clients (Polit & Beck, 2011). Theories can be used as a level of evidence on which to base nursing practice (Fawcett & Desanto-Madeya, 2012). The major function of theory in family nursing is to provide knowledge and understanding that improves nursing services to families.

Most important, theories explain what is hap- pening; they provide answers to “how” and “why” questions, help to interpret and make sense of phe- nomena, and predict or point to what could happen in the future. All scientific theories use the same components: concepts, relationships, and propositions. We will discuss hypotheses and conceptual models as well.

Concepts, the building blocks of theory, are words that create mental images or abstract representa- tions of phenomena of study. Concepts, or the major ideas expressed by a theory, may exist on a continuum from empirical (concrete) to abstract (Powers & Knapp, 2010). The more concrete the concept, the easier it is to figure out when it applies or does not apply (White & Klein, 2008). For ex- ample, one concept in Family Systems Theory is that families have boundaries. A highly abstract aspect of this concept is that the boundary reflects the energy between the environment and the sys- tem. A more concrete aspect of this concept is that families open or close their boundaries in times of stress.

Propositions are statements about the relationship between two or more concepts (Powers & Knapp, 2010). A proposition might be a statement such as the following: Families as a whole influence the health of individual family members. The word influence links the two concepts of “families as a whole” and “health of individual family members.” Propositions denote a relationship between the subject and the object. Propositions may lead to

hypotheses. Theories are generally made up of sev- eral propositions that emphasize the relationships among the concepts in that specific theory.

A hypothesis is a way of stating an expected rela- tionship between concepts or an expected proposi- tion (Powers & Knapp, 2010). The concepts and propositions in the hypothesis are derived from and driven by the original theory. For example, using the concepts of family and health, one could hy- pothesize that there is an interactive relationship between how a family is coping and the eventual health outcome of family members. In other words, the family’s ability to cope with stress affects the health of individual family members and, in turn, the health of this individual family member influ- ences the family’s ability to cope. This hypothesis may be tested by a research study that measures family coping strategies and family members’ health over time and that uses statistical procedures to look at the relationships between the two concepts.

A conceptual model is a set of general propositions that integrate concepts into meaningful configura- tions or patterns (Fawcett & Desanto-Madeya, 2012). Conceptual models in nursing are based on the observations, insights, and deductions that com- bine ideas from several fields of inquiry. Conceptual models provide a frame of reference and a coherent way of thinking about nursing phenomena. A con- ceptual model is more abstract and more compre- hensive than a theory. Like a conceptual model, a conceptual framework is a way of integrating con- cepts into a meaningful pattern, but conceptual frameworks are often less definitive than models. They provide useful conceptual approaches or ways in which to look at a problem or situation, rather than a definite set of propositions.

In this chapter, the terms conceptual model or framework and theory or theoretical framework are often used interchangeably. In part, that is because no single theoretical base exists for the nursing of families. Rather, nurses typically draw from many theoretical conceptual foundations using a more pluralistic and eclectic approach. The interchange- able use of these various terms reflects the fact that there is considerable overlap among ideas in the various theoretical perspectives and conceptual models/frameworks and that many “streams of influence” are important for family nurses to incor- porate into practice. As might be expected, a substantial amount of cross-fertilization among disciplines has occurred, such as between social

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science and nursing, and concepts originating in one theory or discipline have been translated into similar concepts for use in another discipline. Cur- rently, no one theoretical perspective gives nurses a sufficiently broad base of knowledge and under- standing to guide assessment and interventions with families.

THEORETICAL AND CONCEPTUAL FOUNDATIONS FOR THE NURSING OF FAMILIES

Nursing is a scientific discipline; thus, nurses are concerned about the relationships between ideas and data. Nurse scholars explain empirical observa- tions by creating theories, which can be used as evidence in evidence-based practice (Fawcett & Garity, 2008). Nurse researchers investigate and test the models and relationships. Nurses in practice use theories, models, and conceptual frameworks to help clients achieve the best outcomes (Kaakinen & Hanson, 2010). In nursing, evidence, in the form of theory, is used to explain and guide practice. The theoretical foundations, theories, and conceptual models that explain and guide the practice of nurs- ing families have evolved from three major tradi- tions and disciplines: family social science theories, family therapy theories, and nursing models and theories. Figure 3-2 shows the theoretical frame- works that influence the nursing of families.

Family Social Science Theories Of the three sources of theory, family social science theories are the best developed and informative

about family phenomena; examples of such theo- ries include the following: family function, the environment-family interchange, interactions and dynamics within the family, changes in the family over time, and the family’s reaction to health and illness. Table 3-1 summarizes the basic family social science theories and provides some classic references where these theories originate. It is somewhat challenging to use the purist form of family social science theories as a basis for nursing assessment and intervention because of their ab- stract nature. Despite this challenge, in recent years, nursing and family scholars have made strides in extrapolating and morphing these theo- ries for use in clinical work (Fine & Fincham, 2012; Kaakinen & Hanson, 2010).

Family Therapy Theories Family therapy theories are newer than and not as well developed as family social science theories. Table 3-2 lists these theories and the names of some foundational scholars who first developed them. These theories emanate from a practice dis- cipline of family therapy, rather than from an aca- demic discipline of family social science. Family therapy theories were developed to work with trou- bled families and, therefore, focus primarily on family pathology. Nevertheless, these conceptual models describe family dynamics and patterns that are found, to some extent, in all families. Because these models are concerned with what can be done to facilitate change in “dysfunctional” families, they are both descriptive and prescriptive. That is, they not only describe and explain observations made in practice but also suggest treatment or intervention strategies.

Nursing Conceptual Frameworks Finally, of the three types of theories, nursing con- ceptual frameworks are the least developed “theories” in relation to the nursing of families. Table 3-3 lists several of the theories and theorists from within the nursing profession. During the 1960s and 1970s, nurses placed great emphasis on the development of nursing models. Other than the Neuman Sys- tems Model (Neuman & Fawcett, 2010) and the Behavioral Systems Model for Nursing (Johnson, 1980), both of which were based on family social science theories, the majority of the classic nursing

70 Foundations in Family Health Care Nursing

NURSING MODELS/THEORIES

FAMILY THERAPY THEORIES

FAMILY SOCIAL SCIENCE THEORIES

EMERGING FAMILY NURSING

THEORIES

FIGURE 3-2 Theoretical frameworks that influence the nursing of families.

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theorists from the 1970s focused on individual pa- tients and not on families as a unit of care/analysis. The nursing models, in large part, represent a deductive approach to the development of nursing science (general to specific). Although they embody an important part of our nursing heritage, these nursing conceptual frameworks and their deductive approach are viewed more critically today. As the science of nursing has evolved, more inductive

approaches to nursing theory development (specific to the general) are now being advocated.

Table 3-4 shows the differences between family social science theories, family therapy theories, and nursing models/theories as they inform the practice of nursing with families. The following case study is used to demonstrate how the five different theo- retical approaches may inform a nurse’s work with one particular family.

Theoretical Foundations for the Nursing of Families 71

Table 3-1 Family Social Science Theories Used in Family Nursing Practice

Family Social Science Theory Summary

Structural Functional Theory Artinian (1994)

Friedman, Bowden, & Jones (2003)

Nye & Berardo (1981)

Symbolic Interaction Theory Hill & Hansen (1960)

Nye (1976)

Rose (1962)

Turner (1970)

Developmental Theory and Family Life Cycle Theory Carter & McGoldrick (2005)

Duvall (1977)

Duvall & Miller (1985)

Family Systems Theory von Bertalanffy (1950, 1968)

Family Stress Theory Hill (1949, 1965)

McCubbin & McCubbin (1993)

McCubbin & Patterson (1983)

Change Theory Maturana (1978)

Maturana & Varela (1992)

Watzlawick, Weakland, & Fisch (1974)

Wright & Leahey (2013)

Wright & Watson (1988)

Transition Theory White (2005)

White & Klein (2008)

The focus is on families as an institution and how they function to maintain family and social network.

The focus is on the interactions within families and the symbolic communication.

The focus is on the life cycle of families and representing normative stages of family development.

The focus is on the circular interactions among members of family systems, which result in functional or dysfunctional outcomes.

The focus is on the analysis of how families experience and cope with stressful life events.

The focus is on how families remain stable or change when there is change within the family structure or from outside influences.

The focus is on understanding and predicting the transitions families experience over time by combining Role Theory, Family Development Theory, and Life Course Theory.

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72 Foundations in Family Health Care Nursing

Table 3-2 Family Therapy Theories Used in Family Nursing Practice

Family Therapy Theories Summary

Structural Family Therapy Theory Minuchin (1974)

Minuchin & Fishman (1981)

Minuchin, Rosman, & Baker (1978)

Nichols (2004)

International Family Therapy Theory Jackson (1965)

Satir (1982)

Watzlawick, Beavin, & Jackson (1967)

Family Systems Therapy Theory Freeman (1992)

Kerr & Bowen (1988)

Toman (1961)

This systems-oriented approach views the family as an open sociocultural system that is continually faced with demands for change, both from within and from outside the family. The focus is on the whole family system, its subsystems, boundaries, and coalitions, as well as family transactional patterns and covert rules.

This approach views the family as a system of interactive or interlocking behaviors or communication processing. Emphasis is on the here and now rather than on the past. Key interventions focus on establishing clear, congruent communication and clarifying and changing family rules.

This approach focuses on promoting differentiation of self from family and pro- moting differentiation of intellect from emotion. Family members are encouraged to examine their processes to gain insight and understanding into their past and present. This therapy requires a long-term commitment.

Table 3-3 Nursing Theories and Models Used in Family Nursing Practice

Nursing Theories and Models Summary

Nightingale Nightingale (1859)

Rogers’s Science of Unitary Human Beings Casey (1996)

Rogers (1970, 1986, 1990)

Roy’s Adaptation Model Roy (1976)

Roy & Roberts (1981)

Johnson’s Behavioral Systems Model for Nursing Johnson (1980)

King’s Goal Attainment Theory King (1981, 1983, 1987)

Family is described as having both positive and negative influences on the outcome of family members. The family is seen as a supportive institution throughout the life span for its individual family members.

The family is viewed as a constant open system energy field that is ever-changing in its interactions with the environment.

The family is seen as an adaptive system that has inputs, internal control, and feedback processes and output. The strength of this model is understanding how families adapt to health issues.

The family is viewed as a behavioral system composed of a set of organized interactive interdependent and integrated subsystems that adjust and adapt with internal and external forces to maintain stability.

The family is seen as the vehicle for transmitting values and norms of behavior across the life span, which includes the role of a sick family member. Family is responsible for addressing the health care function of the family. Family is seen as both an interpersonal and a social system. The key component is the interaction between the nurse and the family as client.

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Theoretical Foundations for the Nursing of Families 73

Table 3-3 Nursing Theories and Models Used in Family Nursing Practice—cont’d

Nursing Theories and Models Summary

Neuman’s Systems Model Neuman (1983, 1995)

Orem’s Self-Care Deficit Theory Gray (1996)

Orem (1983a, 1983b, 1985)

Parse’s Human Becoming Theory Parse (1992, 1998)

Friedemann’s Framework of Systemic Organization Friedemann (1995)

Denham’s Family Health Model Denham (2003)

The family is viewed as a system. The family’s primary goal is to maintain its stability by pre- serving the integrity of its structure by opening and closing its boundaries. It is a fluid model that depicts the family in motion and not a static view of family from one perspective.

The family is seen as the basic conditioning unit in which the individual learns culture, roles, and responsibilities. Specifically, family members learn how to act when one is ill. The family’s self-care behavior evolves through interpersonal relationships, communication, and culture that is unique to each family.

The concept of family and who makes up the family is viewed as continually becoming and evolving. The role of the nurse is to use therapeutic communication to invite family members to uncover their meaning of the experience, to learn what the meaning of the experience is for each other, and to discuss the meaning of the experience for the family as a whole.

The family is described as a social system that has the expressed goal of transmitting culture to its members. The elements central to this theory are family stability, family growth, family control, and family spirituality.

Family health is viewed as a process over time of family member interactions and health-related behaviors. Family health is described in relation to contextual, functional, and structural domains. Dynamic family health routines are behavioral patterns that reflect self-care, safety and prevention, mental health behaviors, family care, illness care, and family caregiving.

Table 3-4 Family Social Science Theories, Family Therapy Theories, and Nursing Models/Theories

Family Social Family Nursing Criteria Science Theories Therapy Theories Models/Theories

Purpose of theory

Discipline focus

Target population

Descriptive and explana- tory (academic models); to explain family function- ing and dynamics.

Interdisciplinary (although primarily sociological).

Primarily “normal” families (normality-oriented).

Descriptive and prescriptive (practice models); to explain family dysfunction and guide therapeutic actions.

Marriage and family therapy; family mental health; new approaches focus on family strengths.

Primarily “troubled” families (pathology-oriented).

Descriptive and prescriptive (practice models); to guide nursing assessment and intervention efforts.

Nursing focus.

Primarily families with health and illness problems.

Source: Kaakinen, J. R., & Hanson, S. M. H. (2010). Theoretical foundations for nursing of families. In J. R. Kaakinen, V. Gedaly-Duff, D. P. Coehlo, & S. M. H. Hanson (Eds.), Family health care nursing: Theory, practice and research (4th ed.). Philadelphia, PA: F. A. Davis, with permission.

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74 Foundations in Family Health Care Nursing

age 39, but he is described as “a blessing.” Linda and Robert are devout Baptists, but they did discuss abortion in light of the fact that Linda’s illness could progress signifi- cantly after the birth of Travis. Their faith and personal beliefs did not support abortion. They made the decision to continue with Linda’s pregnancy, knowing the risk that it might exacerbate and speed up her MS. Linda had an uncomplicated pregnancy with Travis. She felt well until 3 months postpartum with Travis when she noted a significant relapse of her MS.

Over the last 4 years, Linda has experienced develop- ment of progressive relapsing MS, which is a progressive disease from onset with clear, acute relapses without full recovery after each relapse. The periods between her re- lapses are characterized by continuing progression of the disease. She now has secondary progressive multiple scle- rosis because of her increased weakness. Robert and Linda are having sexual issues with decreased libido and painful intercourse for Linda. Both are experiencing stress in their marital roles and relationship.

Currently, Linda has had a serious relapse of her MS. She is hospitalized for secondary pneumonia from aspi- ration. She has weakness in all limbs, left foot drag, and increasing ataxia. Linda will be discharged with a wheel- chair (this aid is new as she has used a cane up until this admission). She has weakness of her neck muscles and cannot hold her head steady for long periods. She has difficulty swallowing, which probably caused her

Family Case Study: Jones Family Setting: Inpatient acute care hospital

Nursing Goal: Work with the family to assist them in preparation for discharge that is planned to occur in the next 2 days.

Family Members: The Jones family is a nuclear family. The Jones family genogram and ecomap are illustrated in Figures 3-3 and 3-4.

• Robert: 48 years old; father, software engineer, full-time employed.

• Linda: 43 years old; mother, stay-at-home homemaker, has progressive multiple sclerosis, which recently has worsened significantly.

• Amy: 19 years old; oldest child, daughter, freshman at university in town 180 miles away.

• Katie: 13 years old: middle child, daughter, sixth grade, usually a good student.

• Travis: 4 years old: youngest child, son, just started attending an all-day preschool because of his mother’s illness.

Jones Family Story: Linda was diagnosed with multiple sclerosis (MS) at age 30 when Katie was 3 months old. After she was diagnosed with MS, Linda had a well-controlled, slow progression of her illness. Travis was a surprise pregnancy for Linda at

Elise 70 yr

Amy 19 yr

Freshman at university 180 miles away Healthy

Sixth grade Healthy Usually a good student, now showing some difficulty noted by teachers

Preschool, just moved to full day Healthy

Katie 13 yr

Travis 4 yr

Full-time software engineer

Healthy Full-time employed teacher, high school

Tom 64 yr

Sally 63 yr

Full-time employed secretary

Multiple sclerosis; progressive and relapse UTI Constipation Difficulty swallowing Requires supplemental O2 Uses wheelchair

Robert 48 yr

Ralph

Linda 43 yr

FIGURE 3-3 Jones family genogram.

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Theoretical Foundations for the Nursing of Families 75

aspiration. She has numbness and tingling of her legs and feet. She has severe pain with flexion of her neck. Her vision is blurred. She experiences vertigo at times and has periodic tinnitus. Constipation is a constant problem, together with urinary retention that causes periodic urinary tract infections.

Health Insurance: Robert receives health insurance through his work that cov- ers the whole family. Hospitalizations are covered 80/20, so they have to pay 20% of their bills out of pocket. Al- though Robert is employed full-time, this cost adds heavily to the financial burden of the family. Robert has shared with the nurses that he does not know whether he should take his last week of vacation when his wife comes home, or whether he should save it for a time when her condition

worsens. Robert works for a company that offers family leave, but without pay.

Family Members: Robert reports being continuously tired from caring for his wife and children, as well as working full-time. He asked the doctor for medication to help him sleep and decrease his anxiety. He said he is afraid that he may not hear Linda in the night when she needs help. He is open to his mother moving in to help care for Linda and the children. He began counseling sessions with the pastor in their church.

Amy is a freshman at a university that is 180 miles away in a different town. Her mother is proud of Amy going to college on a full scholarship. Amy does well in her coursework but travels home weekends to help the

Travis’s P.E. school teacher Hospital socialworker

MS support group

Pastor

Woman’s church group

Linda’s parents

Paternal grandmother,

Elise Neurology

team

CNS Neurology RN case manager

Family insurance

Robert’s work

Katie’s middle school teacher

R

TKA

Weak relationship

Strong relationship

Tense relationship

Direction of energy flow

L

FIGURE 3-4 Jones family ecomap.

(continued)

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76 Foundations in Family Health Care Nursing

family and her mother. Amy is considering giving up her scholarship to transfer home to attend the local commu- nity college. She has not told her parents about this idea yet.

Katie is in the sixth grade. She is typically a good stu- dent, but her latest report card showed that she dropped a letter grade in most of her classes. Katie is quiet. She stopped having friends over to her home about 6 months ago when her mother began to have more ataxia and slur- ring of speech. Linda used to be very involved in Katie’s school but is no longer involved because of her illness. Katie has been involved in Girl Scouts and the youth group at church.

Travis just started going to preschool 2 months ago for full days because of his mother’s illness. This transition to preschool has been difficult for Travis because he had been home full-time with Linda until her disease worsened. He is healthy and developmentally on target for his age.

Linda’s parents live in the same town. Her parents, Tom and Sally, both work full-time and are not able to help. Robert’s widowed mother, Elise, lives by herself in her own home about 30 minutes out of town and has offered to move into the Jones’ home to help care for Linda and the family.

Discharge Plans: Linda will be discharged home in 2 days.

THEORETICAL PERSPECTIVES AND APPLICATION TO FAMILIES

The case of the Jones family is used throughout the rest of this chapter to demonstrate how assess- ments, interventions, and options for care vary based on the particular theoretical perspective chosen by nurses caring for this family.

Family Systems Theory Family Systems Theory has been the most influential of all the family social science frameworks (Kaakinen & Hanson, 2010; Wright & Leahey, 2013). Much of the understanding of how a family is a system de- rives from physics and biology perspectives that or- ganisms are complex, organized, and interactive systems (Bowen, 1978; von Bertalanffy, 1950, 1968). Nursing theorists who have expanded the concept of systems theory include Hanson (2001), Johnson (1980), Neuman (1995), Neuman and Fawcett (2010), Parker and Smith (2010), Walker (2005), and Wilkerson and Loveland-Cherry (2005).

The Family Systems Theory is an approach that allows nurses to understand and assess fami- lies as an organized whole and/or as individuals within family units who form an interactive and interdependent system (Kaakinen & Hanson, 2010). Family Systems Theory is constructed of concepts and propositions that provide a framework for thinking about the family as a system. Typically, in family nursing, we look at three-generational family systems (Goldenberg & Goldenberg, 2012).

One of the major assumptions of Family Sys- tems Theory is that family system features are de- signed to maintain stability, although these features may be adaptive or maladaptive. At the same time, families change constantly in response to stresses and strains from both the internal and external en- vironments. Family systems increase in complexity over time and increase their ability to adapt and to change (Smith & Hamon, 2012; White & Klein, 2008). The family systems theoretical perspective encourages nurses to see individual clients as participating members of a larger family system. Figure 3-5 depicts a mobile showing how family systems work. Any change in one member of the family affects all members of the family. As it applies to the Jones family, nurses who are using this perspective would assess the impact of Linda’s illness on the entire family, as well as the effects of family functioning on Linda. The goal of nurses is to help maintain or restore the stability of the fam- ily, to help family members achieve the highest level of functioning that they can. Therefore, emphasis should be on the whole, rather than on any given individual. Some of the concepts of sys- tems theory that help nurses working with families are explained in the following sections.

Concept 1: All Parts of the System Are Interconnected What influences one part of the system influences all parts of the system. When an individual in a family experiences a health event, all members are affected because they are connected. The effect on each family member varies in intensity and

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quality. In the Jones case study, all members of the Jones family are touched when Linda’s health condition changes, requiring her to be hospital- ized. Linda takes on the role of a sick person and must give up some of her typical at-home mother roles; she is physically ill in the hospital. She feels guilty about not being at home for her family. Robert is affected because he has to assume the care of Katie and Travis. These tasks require get- ting them ready for school, transporting them to school and other events, and making lunches. Katie gives up some after-school activities to help Travis when he gets home from preschool. Travis misses the food his mother prepared for him, his afternoon alone time with his mother when they read a story, and being tucked into bed at night with songs and a back rub. Amy, who is a fresh- man in college, finds it difficult to concentrate while reading and studying for her college classes. The formal and informal roles of all these family members are affected by Linda’s hospitalization. What affects Linda affects all the members of the Jones family in multiple ways.

Concept 2: The Whole Is More Than the Sum of Its Parts The family as a whole is composed of more than the individual lives of family members. It goes beyond parents and children as separate entities. Families are not just relationships between the parent-child but are all relationships seen together. As we look at the Jones family, it is a nuclear family—mother, father, and three children. They are a family system that is experiencing the stress of a chronically ill mother who is deteriorating over time; each of them is individually affected, but so is the family as a

whole affected by this unexpected (nonnormative) family health event. The individuals in this family may, at times, wonder what will happen to them as a family (whole) when Linda dies.

One way of visualizing the family as a whole is to think of how the Jones family has built the con- cept of the “Jones Family Easter.” Even though Linda always decorates the house and bakes sev- eral special dishes for the family for this holiday, this year she has been too ill to decorate or cook for Easter. The family as a whole feels stressed by the loss of routine and ritual as it represents a change in their family tradition and beliefs. Thus, the family loss is larger than individual loss of this tradition.

Concept 3: All Systems Have Some Form of Boundaries or Borders Between the System and Its Environment Families control the in-flow of information and people coming into its family system to protect in- dividual family members or the family as a whole. Boundaries are physical or abstract imaginary lines that families use as barriers or filters to control the impact of stressors on the family system (Smith & Hamon, 2012; White & Klein, 2008). Family boundaries include levels of permeability in that they can be closed, flexible, or too open to infor- mation, people, or other forms of resources. Some families have closed boundaries as exemplified by statements such as, “We as a family pull together and don’t need help from others,” or “We take care of our own.” For example, if the Jones family were to have a closed boundary, they would not want to meet with the social worker or, if they did, they would reject the idea of a home-health aide and respite care.

Some families have flexible boundaries, which they control and selectively open or close to gain bal- ance or adapt to the situation. For example, the Jones family welcomes a visit from the pastor but turns down visits from some of the women in Linda’s Bible study group. Some families have too open boundaries in which they are not discriminating about who knows their family situation or the num- ber of people from whom they seek help. Open boundaries can invite chaos and unbalance if the family is not selective in the quantity or quality of resources. If the Jones family were to have truly open boundaries, it may reach out to the larger com- munity for resources and have different church

Theoretical Foundations for the Nursing of Families 77

FIGURE 3-5 Mobile depicting family system.

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members come stay with the children every evening. The permeability of boundaries resides on a continuum and varies from family to family.

Concept 4: Systems Can Be Further Organized Into Subsystems In addition to conceptualizing the family as a whole, nurses can think about the subsystems of the family, which may include husband to wife, mother to child, father to child, child to child, grandparents to parents, grandparents to grandchildren, and so forth. These subsystems take into account the three dimensions of families discussed in Chapter 1: structure, function (including roles), and processes (interconnection and dynamics). By understanding these three dimensions, family nurses can stream- line interventions to achieve specific family out- comes. For example, the Jones family has the following subsystems: parents, siblings, parent- child, a daughter subsystem, an in-law subsystem, and a grandparent subsystem. The nurse may work to decrease family stress by focusing on the marital spouse subsystem to help Linda and Robert con- tinue couple time, or the nurse may focus on the sibling subsystem of Katie and Travis and their after-school activities.

Application of Family Systems Theory to the Jones Family The focus of the nurses’ practice from this perspec- tive is family as the client. Nurses work to help families maintain and regain stability. Assessment questions of family members are focused on the family as a whole. While planning for Linda’s dis- charge that is scheduled in the next couple of days, a nurse would ask questions such as the following to explore with Linda or with Linda and Robert:

■ Who are members of your family? (See Concept 1.)

■ How do you see your family being involved in your care once you go home? (See Concept 1.)

■ Who in your family will experience the most difficulty coping with the changes, especially now that you will be using a wheelchair? (See Concept 1.)

■ How are the members of your family meeting their personal needs at this time? (See Concept 1.)

■ The last time your condition worsened, what helped your family the most? (See Concept 2.)

■ The last time your condition worsened, what was the least help to your family? (See Concept 2.)

■ Who outside of your immediate family do you see as being a potential person to help your family during the next week when you go home? (See Concept 3.)

■ How do you feel your family would react to having a home-health aide come to help you twice a week? (See Concept 3.)

■ Are there some friends, church members, or neighbors who might be able to help with some of the everyday management issues, such as carpooling to school, or providing some after-school care for Travis so Katie could go to her after-school activities? (See Concepts 3 and 4.)

■ What are your thoughts about how the children will react to having Grandma Elise here to help the family? (See Concept 4.)

Interventions by family nurses must address in- dividuals, subsystems within the family, and the whole family all at the same time. One strategy would be to assess family process and functioning and then offer intervention strategies to assist the family in its everyday functioning. Nurses could ask the following types of questions about functioning:

■ Linda and Robert, from what you have told me, it appears that your oldest daughter, Amy, has been able to help take on some of the parental jobs in the family by being the errand runner, chauffeur, and grocery shop- per. Now that Amy is off to college, which of your family roles will need to be covered by someone else for a while when you and Linda first come home: cooking, laundry, chauffeur, cleaning the house?

■ Because you both shared with me that your family likes to go bowling on family night out, how do you envision how Linda being in a wheelchair might affect family night out?

■ Robert and Linda, have the two of you dis- cussed legal durable power of attorney for health care so Robert can make health care decisions when the time comes that Linda may not be able to do this for herself? Linda, who would you prefer to make health care decisions for you, should you not be able to do so? Let’s discuss what those health care decisions might involve.

78 Foundations in Family Health Care Nursing

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■ Tell me about your personal/sexual relation- ship that you, Linda, are experiencing now that you are more disabled.

The goal of using a family systems perspective is to help the family reach stability by building on their strengths as a family, using knowledge of the family as a social system, and understanding how the family is an interconnected whole that is adapt- ing to the changes brought about by the health event of a given family member.

Strengths and Weaknesses of Family Systems Theory The strengths of the general systems framework are that this theory covers a large array of phe- nomena and views the family and its subsystems within the context of its suprasystems (the larger community in which it is embedded). Moreover, it is an interactional and holistic theory that looks at processes within the family, rather than at the con- tent and relationships between the members. The family is viewed as a whole, not as merely a sum of its parts. Another strength of this approach is that it is an excellent data-gathering method and assess- ment strategy, such as using a family genogram to gather a snapshot of the family as a whole or other family system assessment instruments discussed in Chapter 4.

Systems theory also has its limitations (Smith & Hamon, 2012). Because this theoretical orientation is so global and abstract, it may not be specific enough for beginners to define family nursing in- terventions. It is important for family nurses to be able to understand conceptually how important the family as a whole is to the practice of family nurs- ing. As health care systems continue to emphasize the autonomy of the individual, it takes time and practice to develop ways to deeply understand how a family, as a whole, is greater than the members of the family.

Developmental and Family Life Cycle Theory Developmental Theory provides a framework for nurses to understand normal family changes and experiences over the members’ lifetimes; the the- ory assesses and evaluates both individuals and families as a whole. Developmental stages for in- dividuals have been detailed by psychologists and sociologists, such as Erikson, Piaget, and Bandura.

Families are seen as a system in that what happens at one level has powerful ramifications at other lev- els of the system. Families are seen as the basic social unit of society and as the optimal level of intervention.

The family developmental theories are specifi- cally geared to understanding families and not in- dividuals (Smith & Hamon, 2013; White & Klein, 2008). Families, like individuals, are in constant movement and change throughout time—the fam- ily life cycle. Family developmental theorists who inform the nursing of families include Duvall (1977); Duvall and Miller (1985); and McGoldrick, Carter, and Garcia-Preto (2010). The original work of Duvall (1977), and later Duvall and Miller (1985), examined how families were affected or changed cognitively, socially, emotionally, spiritu- ally, and physically when all members experienced developmental changes. The relationships among family members are affected by changes in individ- uals, and changes in the family as a whole affected the individuals within the family. These theorists recognized that families are stressed at common and predictable stages of change and transition and need to undergo adjustment to regain family stability. This early theoretical work was primarily based on the experiences of white Anglo middle- class nuclear families, with a married couple, children, and extended family.

McGoldrick et al. (2010) expanded on the orig- inal Developmental and Family Life Cycle Theory because they recognized the dramatically chang- ing landscape of family structure, functions, and processes that was making it increasingly difficult to determine normal predictable patterns of change in families. They replaced the concept of “nuclear family” with “immediate family,” which takes into consideration all family structures, such as stepfam- ilies, gay families, and divorced families. Instead of addressing the legal aspects of being a married cou- ple, they viewed the concept of couple relationships and commitment as a focal point for family bonds.

Concept 1: Families Develop and Change Over Time According to Family Developmental Theory, fam- ily interactions among family members change over time in relation to structure, function (roles), and processes. The stresses created by these changes in family systems are somewhat pre- dictable for different stages of family development.

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The first way to view family development is to look at predictable stresses and changes as they relate to the age of the family members and the social norms the individuals experience throughout their development. The classic tradi- tional work of Duvall (1977) and Duvall and Miller (1985) identified overall family tasks that need to be accomplished for each stage of family development, as related to the developmental tra- jectory of the individual family members. It starts with couples getting married and ends with one member of the couple dying. Refer to Table 3-5 for a detailed list of the traditional family life cycle stages and developmental tasks. McGoldrick et al. (2010) expanded the traditional develop- mental and family life cycle theory to address changes in the family that undergoes a divorce. Table 3-6 outlines the emotional process of a

family undergoing a divorce and describes the developmental tasks the family deals with at dif- ferent stages.

According to this theory, families have a pre- dictable natural history. The first stage involves the simple husband-wife pairing, and the family group becomes more complex over time with the addition of new members. When the younger generation leaves home to take jobs or marry, the original fam- ily group becomes less complex again.

The second way to view family development is to assess the predictable stresses and changes in families based on the stage of family development and how long the family is in that stage. For ex- ample, suppose each of the following couples have made a choice to be childless: a newly married couple, a couple who have been married for 3 years, and a couple who have been married for

80 Foundations in Family Health Care Nursing

Table 3-5 Traditional Family Life Cycle Stages and Developmental Tasks

Stages of Family Life Cycle Family Developmental Tasks

Married couple

Childbearing families with infants

Families with preschool children

Families with school-age children

Families with adolescents

Families with young adults: launching

Middle-aged parents

Aging families

Establishing relationship as a married couple.

Blending of individual needs, developing conflict-and-resolution approaches, communication patterns, and intimacy patterns.

Adjusting to pregnancy and then infant.

Adjusting to new roles, mother and father.

Maintaining couple bond and intimacy.

Understanding normal growth and development.

If more than one child in family, adjusting to different temperaments and styles of children.

Coping with energy depletion.

Maintaining couple bond and intimacy.

Working out authority and socialization roles with school.

Supporting child in outside interests and needs.

Determining disciplinary actions and family rules and roles.

Allowing adolescents to establish their own identities but still be part of family.

Thinking about the future, education, jobs, working.

Increasing roles of adolescents in family, cooking, repairs, and power base.

After member moves out, reallocating roles, space, power, and communication.

Maintaining supportive home base.

Maintaining parental couple intimacy and relationship.

Refocusing on marriage relationship.

Ensuring security after retirement.

Maintaining kinship ties.

Adjusting to retirement, grandparent roles, death of spouse, and living alone.

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Theoretical Foundations for the Nursing of Families 81

Table 3-6 Family Life Cycle for Divorcing Families

Emotional Process of Transition: Phase Prerequisite Attitude Developmental Issues

Divorce The decision to divorce

Planning the breakup of the system

Separation

The divorce

Postdivorce Family Single parent (custodial household or primary residence)

Single parent (noncustodial)

Acceptance of inability to resolve marital tensions sufficiently to continue relationship.

Supporting viable arrangements for all parts of the system.

a. Willingness to continue cooperative co-parental relationship and joint financial support of children.

b. Work on resolution of attachment to spouse.

More work on emotional divorce: overcoming hurt, anger, guilt, among other emotions.

Willingness to maintain financial responsi- bilities, continue parental contact with ex-spouse, and support contact of chil- dren with ex-spouse and his or her family.

Willingness to maintain financial responsibilities and parental contact with ex-spouse, and to support custodial parent’s relationship with children.

Acceptance of one’s own part in the failure of the marriage.

a. Working cooperatively on problems of custody, visitation, and finances.

b. Dealing with extended family about the divorce.

a. Mourning loss of intact family.

b. Restructuring marital and parent-child relationships and finances; adaptation to living apart.

c. Realignment of relationships with extended family; staying connected with spouse’s extended family.

a. Mourning loss of intact family.

b. Retrieval of hopes, dreams, expectations from the marriage.

c. Staying connected with extended families.

a. Making flexible visitation arrangements with ex-spouse and family.

b. Rebuilding own financial resources.

c. Rebuilding own social network.

a. Finding ways to continue effective parenting.

b. Maintaining financial responsibilities to ex-spouse and children.

c. Rebuilding own social network.

Source: Adapted from Carter, B., & McGoldrick, M. (2005). The divorce cycle: A major variation in the American family life cycle. In B. Carter & M. McGoldrick (Eds.), The expanded family life cycle: Individual, family, and social perspectives (3rd ed.). New York, NY: Allyn & Bacon.

15 years (White & Klein, 2008). The stresses each couple experiences from this decision would be different.

Concept 2: Families Experience Transitions From One Stage to Another Disequilibrium occurs in the family during the transitional periods from one stage of development to the next stage. When transitions occur, families experience changes in kinship structures, family roles, social roles, and interaction. Family stress is

considered to be greatest at the transition points as families adapt to achieve stability, redefine their concept of family in light of the changes, and re- align relationships as a result of the changes (McGoldrick et al., 2010). For example, marriage changes the status of all family members, creates new relationships for family members, and joins two different complex family systems.

Family developmental theorists explore whether families make these transitions “on time” or “off time” according to cultural and social expectations

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(Smith & Hamon, 2012; White & Klein, 2008). For example, it is “off time” for a couple in their forties to have their first child. It is still considered “on time” in North America to have a couple be married before the birth of a child, but that norm may be changing given the increased numbers of babies born to couples who are not married but cohabitate.

Even though some family developmental needs and tasks must be performed at each stage of the family life cycle, developmental tasks are general goals, rather than specific jobs that must be com- pleted at that time. Achievement of family devel- opmental tasks enables individuals within families to realize their own individual tasks. According to family developmental theory, every family is unique in its composition and in the complexity of its expectations of members at different ages and in different roles. Families, like individuals, are influenced by their history and traditions and by the social context in which they live. Further- more, families change and develop in different ways because their internal/external demands and situations differ. Families may also arrive at simi- lar developmental levels using different processes. Despite their differences, however, families have enough in common to make it possible to chart family development over the life span in a way that applies to most, if not all families (Friedman, Bowden, & Jones, 2003). Families experience stress when they transition from one stage to the next. The predictable changes that are based on these family developmental steps are called nor- mative changes. When changes occur in families out of sequence, “off time,” or are caused by a dif- ferent family event, such as illness, they are called nonnormative.

In contrast with the Duvall (1977) and later Duvall and Miller’s (1985) traditional develop- mental approach, Carter and McGoldrick (1989) and McGoldrick et al. (2010) built on this work by approaching family development from the per- spective of family life cycle stages. They explored what happens within families when family mem- bers enter or exit their family group; they focus on specific family experiences, such as disruption in family relationships, roles, processes, and fam- ily structure. Examples of a family member leav- ing would be divorce, illness, a miscarriage, or death of a family member. Examples of family members entering would include birth, adoption, marriage, or other formal union.

Today, the Developmental and Family Life Cycle Theory remains useful as long as it is viewed generally for use with families, despite all the cur- rent variations of families. McGoldrick et al. (2010) recently expanded the Family Life Cycle to incor- porate the changing family patterns and broaden the view of both development and the family.

Application of Developmental and Family Life Cycle Theory to the Jones Family In conducting family assessments using the devel- opmental model, nurses begin by determining the family structure and where this family falls in the family life cycle stages. Using the developmental tasks outlined in the developmental model, the nurse has a ready guide to anticipate stresses the family may be experiencing or to assess the devel- opmental tasks that are not being accomplished. Family assessment would also entail determining whether the family is experiencing a “normative” or “nonnormative” event in the family life cycle.

According to Duvall and Miller (1985), the Jones family is in the Families With Young Adults: Launching Phase because Amy left home and is now a freshman at a college. She is living away from home for the first time. Regardless of the fact that the Jones family is experiencing a nonnormative event (unexpected, developmental stressor) because Linda, the mother, is now in the hospital, the fam- ily is also experiencing the normative or expected challenges for a family when the oldest child leaves home. This is a good example of where major in- dividual and whole family events coincide and pres- ent challenges for families. Questions to explore with the family might include the following:

1. How has the family addressed the realloca- tion of family household physical space since Amy left for school? (For example, the allo- cation of bedrooms or the arrangement of space within the bedroom if Katie and Amy shared the bedroom).

2. How has Amy developed as an indirect caregiver (such as calling home to chat with dad and see how he is doing, talking with the siblings and teasing or supporting their efforts, or sharing with parents her school life to reduce their worry about her adjustment)?

3. How have family roles changed since Amy left for school? What roles did Amy perform

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for the family that someone else needs to pick up now? For example, who will per- form such roles as chauffeur, grocery shop- per, errand runner, and babysitter now that Linda is not able and Amy is gone?

4. How has the power structure of the family shifted now that Katie is more responsible for the care of Travis?

5. How has the parents’ couple time changed since Amy went off to college?

With the developmental approach, nursing interventions may include helping the family to un- derstand individual and family developmental tasks. Interventions could also include helping the family understand the normalcy of disequilibrium during these transitional periods. Another intervention is to help the family mitigate these transitions by cap- italizing on family rituals. Family rituals serve to decrease the anxiety of changes in that they help link the family to other family members and to the larger community (Imber-Black, 2005).

Family nurses must recognize that every family must accomplish both individual and family devel- opmental tasks for every stage of the Developmental and Family Life Cycle. Events at one stage of the cycle have powerful effects at other stages. Helping families adjust and adapt to these transitions is an important role for family nurses. It is important for nurses to keep in mind the needs and requirements of both the family as a whole and the individuals who make up the family.

Strengths and Weaknesses of the Developmental and Family Life Cycle A major strength of the developmental approach is that it provides a systematic framework for predict- ing what a family may be experiencing at any stage in the family life cycle. Family nurses can assess a family’s stage of development, the extent to which the family has achieved the tasks associated with that stage of family development, and problems that may or may not exist. It is a superb theoretical approach for assisting nurses who are working with families on health promotion. Family strengths and available resources are easier to identify because they are based on assisting families to achieve developmental milestones.

A primary criticism of family development the- ory is that it best describes the trajectory of intact, two-parent, heterosexual nuclear families. The

original eight-stage model was based on a nuclear family, assumed an intact marriage throughout the life cycle of the family, and was organized around the oldest child’s developmental needs. It did not take into account divorce, death of a spouse, remar- riage, unmarried parents, childless couples, or co- habitating or gay and lesbian couples. It normalized one type of family and invalidated others (Smith & Hamon, 2012). Today’s families vary widely in their makeup and in their roles. The traditional view of families moving in a linear direction from getting married, tracking children from preschool to launching, middle-aged parents, and aging fam- ilies is no longer so clear-cut and applicable. Carter and McGoldrick (1989, 2005), Carter (2005), and McGoldrick et al. (2010) expanded the family developmental model to include stresses in the re- married family. As family structures continue to change in response to the culture and ecologic sys- tem, trajectories of families likely will not fit within the traditional developmental framework (White & Klein, 2008).

Bioecological Systems Theory Urie Bronfenbrenner was one of the world’s lead- ing scholars in the field of developmental psychol- ogy (Bronfenbrenner, 1972a, 1972b, 1979, 1981, 1986, 1997; Bronfenbrenner & Morris, 1998). He contributed greatly to the ecological theory of human development, which concentrated on the interaction and interdependence of humans—as biological and social entities—with the environ- ment. Originally this idea was called the Human Ecology Theory, then it was changed to Ecological Systems Theory, and it finally evolved into the Bioecological Systems Theory (Bronfenbrenner & Lerner, 2004). The Bioecological System is the combination of children’s biological disposition and environmental forces coming together to shape the development of human beings. This theory combines both Developmental Theory and Systems Theory to understand individual and family growth.

Before Bronfenbrenner, child psychologists studied children, sociologists examined families, anthropologists analyzed society, economists scru- tinized the economic framework, and political sci- entists focused on political structures. Through Bronfenbrenner’s groundbreaking work in “human ecology,” environments from the family to larger

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economic/political structures have come to be viewed as part of the life course from childhood through adulthood. This “bioecological” approach to human development crosses over barriers among the social sciences and builds bridges among the disciplines, allowing for better understanding to emerge about key elements in the larger social structure that are vital for optimal human develop- ment (both individual and family) (Boemmel & Briscoe, 2001).

The human ecology framework brings together other diverse influences. From evolutionary theory and genetics comes the view that humans develop as individual biological organisms with capacities limited by genetic endowment (ontogenetic develop- ment) that lead to hereditary familial characteristics. From population genetics comes the perspective that populations change by means of natural selec- tion. For the individual, this means that individuals/ families demonstrate their fitness by adapting to ever-changing environments. From ecological the- ories come the notion that human and family de- velopment is “contextualized” and “interactional” (White & Klein, 2008, p. 247). All of this leads to the never-ending debate related to the dual nature of humans as constructions of both biology and culture, hence the argument nature versus nurture. Although this debate has never been resolved, sci- entists have moved beyond debate to the realization that the development of most human traits depends on a nature/nurture interaction rather than on one versus the other (White & Klein, 2008). Thus, Bronfenbrenner moved his own theory and ideas from the concept and terminology of ecology (en- vironment) to bioecology (both genetics and soci- ety) as a way of embracing two developmental origins for this theory. His Bioecological Systems Theory emphasizes the interaction of both the biological/genetics (ontologic/nature) and the so- cial context (society) characteristics of development (Smith & Hamon, 2012; White & Klein, 2008).

The human bioecological perspective consists of a framework of four locational/spatial contexts and one time-related context (Bengtson, Acock, Allen, Dilworth-Anderson, & Klein, 2005). A primary fea- ture of this theory is the premise that individual and family development is contextual over time. Accord- ing to Bronfenbrenner, individual development is affected by five types or levels of environmental sys- tems (Figure 3-6) (Emory University, 2008). Family Bioecological Theory describes the interactions and

influences on the family from systems at different levels of engagement.

Microsystems are the settings in which individuals/ families experience and create day-to-day reality. They are the places people inhabit, the people with whom they live, and the things they do together. In this level, people fulfill their roles in families, with peers, in schools, and in neighborhoods where they are in the most direct interaction with agents around them.

Mesosystems are the relationships among major microsystems in which persons or families actively participate, such as families and schools, families and religion, and families to peers. For example, how does the interaction between families and school affect families? Can the relationship between families and their religious/spiritual com- munities be used to help families?

Exosystems are external environments that influ- ence individuals and families indirectly. The person may not be an active participant within these sys- tems, but the system has an effect on the persons/ families. For example, a parent’s job experience affects family life, which, in turn, affects the chil- dren (parent’s job’s travel requirements, job stress, salary). Furthermore, governmental funding to other microsystems environments—schools, li- braries, parks, health care, and day care—affect the experiences of children and families.

Macrosystems are the broad cultural attitudes, ide- ologies, or belief systems that influence institutional environments within a particular culture/subculture in which individuals/families live. Examples include the Judeo-Christian ethic, democracy, ethnicity, and societal values. Mesosystems and exosystems are set within macrosystems, and together they are the “blueprints” for the ecology of human and family development.

Chronosystems refer to time-related contexts where changes occur over time and have an effect on the other four levels/systems of development mentioned earlier. Chronosystems include the patterning of environmental events and transitions over the life course of individuals/families. These effects are cre- ated by time or critical periods in development and are influenced by sociohistorical conditions, such as parental divorce, unexpected death of a parent, or a war. Individuals/families have no control over the evolution of such external systems over time.

Within each one of these levels are roles, norms, and rules that shape the environment.

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Theoretical Foundations for the Nursing of Families 85

CHRONOSYSTEM

Cha nges

in person s or environment over time

U ne

xp ec

te d

de at

h of

p ar

en t B

roa d i

de olo

gy, law

s, an d cust

oms of one’s culture, subculture, or social class

MACROSYSTEM

Extended Family EXOSYSTEM

MESOSYSTEM

MI CRO

SYSTEM

Friends of

family Neighbors

Mass media

Family Day-care center

Community health and

welfare services

Doctor’s office

Child

Legal services

Workplace

Church, synagogue Peers

School board

Sociohistorical Conditions

D isasters W

ar s

Critical events (e.g., parental divorce)

School Neighborhood play area

Church

School

FIGURE 3-6 Bioecological Systems Theory Model.

Bronfenbrenner’s model of human/family devel- opment acknowledges that people develop not in isolation, but rather in relation to their larger en- vironment: families, home, schools, communities, and society. All of these interactive, ever-changing, and multilevel environments over time are key to understanding human/family development.

Bronfenbrenner uses the term bidirectional to describe the influential interactions that take place between children and their relationships with

parents, teachers, and society. All relationships among humans/families and their environment are bidirectional or interactional. The environment in- fluences us as individuals or families, but, in turn, individuals/families influence what happens in their own environments. This kind of interaction is also basic to family systems theory.

In the bioecological framework, what happens outside family units is as important as what hap- pens inside individual members and family units.

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Developing families are on center stage as an ac- tive force shaping their social experiences for them- selves. The ecological perspective views children/ families and their environments as mutually shap- ing systems, each changing and adapting over time (again, a systems perspective). The bioecological approach addresses both opportunities and risks. Opportunities mean that the environment offers families material, emotional, and social encourage- ment compatible with their needs and capacities. Risks to family development are composed of direct threats or the absence of opportunities.

Application of the Bioecological Systems Theory to the Jones Family Assessment consists of looking at all levels of the system when interviewing the family in a health care setting. Assessment of the microsystem reveals that the Jones family consists of five members: two parents and three children. They live in a two-story home with four bedrooms in an older suburban section of the town. Mother Linda had been a full- time homemaker before experiencing health prob- lems related to her diagnosis of MS. The mesosystem assessment for the family consists of identifying the schools the children attend, neighborhood/friends, extended family, and religious affiliation. The old- est daughter is a college student who travels home on weekends to help the family. The second daugh- ter is in a local middle school and can walk back and forth to her school. The youngest child, a boy, attends an all-day preschool and is transported by his parents or other parents from the preschool. The family has attended a Protestant church in the neighborhood. The family lives in a house in an older established neighborhood, and has made friends through the schools, church, and neighbor- hood contacts. Part of the extended family (grand- parents) live nearby, and all of the family members get together for the holidays; neither parent has siblings who live nearby. The exosystem assessment shows that father Robert works 40 hours a week for an industrial plant at the edge of town, and he drives back and forth daily. The father has some job stress, because he is in a middle-management position. His salary is average for middle-class fam- ilies in the United States. State and county funding to the area schools, libraries, and recreational facil- ities are always a struggle in this community. The town has physicians/clinics of all specialties and has one community hospital. An assessment of the

macrosystem shows that this community is largely white, with only 10% of residents from ethnic backgrounds. Most people in the community em- brace a Christian ethic.

The value system includes a family focus and a strong work ethic. Many of the people prefer the Democratic Party. In terms of the time-related contexts of the chronosystem, a few things are no- table. These time-related events put more stress on the family than usual nonnormative events. Linda’s disease process with MS has exacerbated in recent times, placing additional strain on the family sys- tem. Robert’s own dad died in the past year, leaving him extra responsibility for his widowed mother in addition to his responsibility for his own children and now ill wife. The economy in the country and region is going through a recession, leading people to feel some fear about their economic futures. Robert had hoped that his wife could go to work part-time when their youngest child went to school, but that no longer seems to be a possibility. The family assessment would include how the fam- ily at each of the earlier-mentioned levels is influ- enced by the changes brought about by Linda’s progressing debilitative disease and recent hospi- talization. The family is experiencing disturbance at many of these levels.

Interventions include the following possibilities. In general, nurses can also look for additional sys- tems with which the family could interact to help support family functioning during this family ill- ness event. Nurses could make home visits to assess the living arrangements of the family and to deter- mine how the home could be changed to accom- modate a wheelchair/walker. The nurses should talk with the parents about their relationship to the schools, church, and extended family support sys- tems. The parents might be advised to inform the school(s), church, workplace, and grandparents of what is happening to their family. The nurses could make suggestions relative to Travis’s current be- havior with having to go to all-day preschool. The nurses also could explore with the family the larger external environment, including community re- sources (e.g., Multiple Sclerosis Society, visiting nurse service, or counseling services). The nurses should contact the medical doctor(s) and discharge planning nurse at the hospital to obtain informa- tion to interpret the diagnosis, prognosis, and treat- ment of MS to the family. The nurses might talk to the family about how their faith can be of help

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during these tough times and what their primary concerns are as a family. The nurses should get in touch with the social workers at the hospital to co- ordinate care and social well-being strategies for the posthospitalization period, as well as in the future. Strategies may involve application to social security for the disabled. A family care planning meeting should be set up to involve as many care- takers and stakeholders as possible.

Evaluation of the interventions would consist of follow-up with the family through periodic home visits and telephone contact. The nurses would be interested in how the family is adapting to its situation, how the father is dealing with the extra responsibility, how the children are coping, and the physical and mental health of the mother. Because MS is a chronic progressive relapsing dis- order, a plan would be put into place for periodic evaluations that might involve changing the plan of care.

Strengths and Weaknesses of the Bioecological Systems Theory The strength of the bioecological perspective is that it represents a comprehensive and holistic view of human/family development—a bio/psycho/socio/ cultural/spiritual approach to the understanding of how humans and families develop and adapt to the larger society. It includes both the nature (biological) and nurture (environmental contexts) aspects of growth and development for both individuals and families. It directs our attention to factors that occur within, as well as to the layered influences of factors that occur outside individuals and families. The bioecological perspective provides a valuable complement to other theories that may offer greater insight into how each aspect of the holistic approach affects individuals and families over time.

The strength of this theory is also part of the weakness of this approach. The different systems show nurses what to think about that may affect the family, but the direction of how the family adapts is not specifically delineated in this theory. In other words, the bio/psycho/socio/cultural/spiritual as- pects of human/family growth and development are not detailed enough to define how individuals/ families can accomplish or adapt to these contextual changes over time. Aspects of the theory require further delineation and testing, that is, the influence of biological and cognitive processes and how they interact with the environment.

Chronic Illness Framework The Chronic Illness Framework was proposed by Rolland (1987, 1994) to help foster understanding of how chronic illness affects the family. Chronic illness is a complex concept that has vast implica- tions for the individual and the family. Rolland’s conceptual framework has evolved over time and helps nurses think about multiple factors of the ill- ness and how these influence family functioning. This framework, sometimes called the Family Sys- tems and Chronic Illness Framework (Rolland, 1987), has three major elements:

■ Illness types ■ Time phases of the illness ■ Family functioning

The illness types include the following aspects of chronic illness: onset of the illness, the course of the disease, the outcome of the illness, and the degree of incapacitation of the family member. The aspect of time addresses how issues facing families and individuals vary depending on the timing in the course of the illness, such as initial diagnosis, long chronic illness day-to-day adjust- ment phase, or terminal phase. All of these factors influence the third major concept of family func- tioning. Family functioning includes the demands of managing the illness and the family strengths and vulnerabilities. All of these aspects of the Chronic Illness Framework are detailed in the fol- lowing section. Figure 3-7 depicts the different factors that influence how the family experiences the chronic illness of a family member. The over- arching factor for families living with chronic ill- ness is the degree of uncertainty about how the illness will present and affect the family. According to the Chronic Illness Framework, it is possible to have at a minimum 24 different configurations of the factors that influence chronic illness and family systems (Rolland, 1987).

Illness Types Onset of Illness: Gradual or Acute When chronic illness has an acute onset (e.g., a spinal cord injury, a traumatic brain injury, or an amputation), the family reacts by rapid mobi- lization of crisis mode strategies to manage the situation. These strategies include short-term role flexibility, accessing previously used problem- solving approaches in other crises, and the ability

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to use outside resources. As the acute phase of a chronic condition morphs into a chronic illness—or if a chronic illness has a gradual onset, such as multiple sclerosis, Parkinson’s disease, or renal failure—the family adaptation occurs over a pro- longed period of time. Course of Illness: Progressive, Constant, or Relapsing/Episodic The issues families manage are affected by the course of the illness. Chronic disease, however, is seldom a pure typology and over time it often changes from one course to another. When indi- vidual family members have a progressive chronic illness, the disability occurs in a stepwise fashion. It requires families to make gradual changes in their roles to adapt to the losses and needs of the family member as the illness progresses in severity. The families must address perpetual symptoms, which requires continual adaptation mixed with minimal periods of relief. Thus, families usually experience exhaustion from the demands of the illness. As the disease progresses, new family roles

develop and family caregiving tasks evolve over time. Examples of a progressive chronic illness are amyotrophic lateral sclerosis (ALS), Huntington’s disease, and Parkinson’s disease.

Chronic illness is considered constant when, after the initial chaos and stress caused by the acute illness/injury, it evolves into a semipermanent change in condition that is stable and somewhat predictable. The potential for family stress and exhaustion are present, but to a lesser degree than in a progressive chronic illness. Examples of a con- stant chronic illness are spinal cord injuries, cere- brovascular stroke, and myocardial infarction.

With a relapsing/episodic chronic illness, fam- ilies alternate between stable low symptomology periods and periods of exacerbation with flare-up. Families are strained by both the frequency of the transition between stable and unstable crisis modes of functioning and the ongoing uncer- tainty of when the remission and exacerbation will occur. The uncertainty and unpredictability of relapsing is very taxing on families. Examples

88 Foundations in Family Health Care Nursing

Initial/crisis Mid Terminal

Illness Types

Family Functioning Time Phases

Demands of illness

Family strengths and vulnerabilities

Chronic Illness Framework (Rolland, 1987)

Non-fatal

Unpredictable

Fatal

Incapacitating

Non-incapacitating

Progressive

Constant

Relapsing

Gradual

Acute

FIGURE 3-7 Family systems and illness model.

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of relapsing/episodic chronic illness are multiple sclerosis, bipolar disorder, schizophrenia, and lupus. Outcome: Trajectory of Illness The trajectory of the illness and the possible out- come affect family functioning. Stress is constant and adaptation strained when the chronic illness has a fatal outcome that results in a shortened life span, such as metastatic cancers, ALS, Huntington’s disease, or cystic fibrosis. Other chronic illnesses do not shorten the individual’s life span, so they do not generate the same amount of family adjust- ment as other outcomes. Types of chronic illness that do not shorten a person’s life span are arthri- tis, chronic fatigue syndrome, and gluten intoler- ance. Some chronic illnesses both shorten the life span of the individual and have the potential for sudden death. Examples of these types of chronic illness include congestive heart failure and auto- nomic dysreflexia with a high spinal cord injury. These types of chronic illness present with a dif- ferent set of family stressors and adaption needs than either of the two other possible outcomes or trajectories. Outcome: Incapacitation The extent and kind of incapacitation of the illness places different stressors on the family and the in- dividual living with chronic illness. Incapacitation can present in a variety of ways, such as cognitive (Alzheimer’s disease, Parkinson’s disease), energy production or expenditure (congestive heart failure, chronic obstructive pulmonary disease), impaired mobility (stroke, multiple sclerosis, cerebral palsy), disfigurement (amputation, scars), or social stigma (mental health disorders or HIV).

Time Phases The stress responses and needs of the family change depending on the time phase of the illness. The needs of the family when a chronic illness is newly diagnosed are different than when a person adjusts and lives with the illness over time. The needs change again when ill family members enter the terminal phase of their chronic illness. Specific family stressors or needs for each time phase are outlined below. Initial/Crisis Time Phase When family members are first diagnosed with a chronic illness they must (1) establish a positive working relationship with health care providers, (2) gather information about the diagnosis, and

(3) accept the diagnosis (Danielson, Hamel-Bissell, & Winstead-Fry, 1993). All diagnoses have the po- tential to create stress. The diagnostic process cre- ates stress and uncertainty in families. Families vary in their ability to seek resources or informa- tion and to understand the ramifications of the diagnosis. For some families, the diagnosis is un- expected and can put the family in a crisis mode. For other families, the diagnosis is confirmation of their observations and concerns and so may result in relief. Families may or may not accept the diag- nosis. Some families may deny the diagnosis, and others will question the diagnosis and seek other opinions. Once a medical diagnosis is given to families, the diagnosis becomes public knowledge, which means that everyone who knows the diag- nosis has a reaction and response. Families may choose to keep the information within their family unit or be discriminating about whom they tell. Nurses have a central role in providing informa- tion to families with new diagnoses and helping them navigate the health care system. Family education is critical to the health outcomes, specif- ically integrating the medical treatment plan into family life and family roles. Mid–Time Phase The mid–time phase is considered the “long haul” of chronic illness (Rolland, 1987, 2005a). Rolland (2005a) outlined the salient issues in this phase: (1) pacing and avoiding burnout, (2) minimizing relationship skew between the patient and other family members, (3) sustaining autonomy for all members of the family, (4) preserving or redesigning individual and family development goals within the constraints of the illness, and (5) sustaining intimacy in the face of threatened loss. According to Danielson, Hamel-Bissell, and Winstead-Fry (1993), this time phase also includes the following challenges: (1) accept the treatment plan, (2) reorganize family roles, and (3) maintain a positive relationship with health care providers. Once families accept the diagnosis, they move into what Danielson et al. (1993) called “illness career,” which is a way that families adapt and adjust to the illness on a day-by-day basis. The major challenge of the family is to redefine what is a normal bal- anced family life while also facing uncertainty about the future (Rolland, 2005a, 2005b). During this phase, families are constantly adjusting to the situation caused by the illness. Families vary in

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their ability to adjust to the illness situation—the more problems adjusting, the more stress families will experience. Family role stress, role strain, and role overload can occur when the family lives with illness over a long period.

Family tasks in this phase are to redefine normal, adjust to social stigma or altered relationships caused by the disability or illness, continue to main- tain positive relationships with the health care team, and successfully grieve the loss caused by the disability or chronic condition. The family must adjust continually to the remission and exacerba- tions of the illness. One of the major tasks is to bal- ance the needs of the family and the needs of ill family members (Danielson et al., 1993).

Families must adapt to the demands of the chronic condition; thus, a whole body of informa- tion has evolved around family coping and family adaptation with medical regimens. How do families promote the recovery of ill members while preserv- ing their energy to nurture other family members and perform other family functions? An example of an appropriate intervention would be to help fam- ilies find respite care for family caregivers so that caregivers do not “burn out.” The family relation- ship with the health care provider(s) is a critical component of this phase. Families expect that they will be active members of the treatment team. Terminal Time Phase The nursing tasks in the terminal time phase con- sist of working with the family through the dying of the family member, through the grieving process, to integrating the loss into the family and family life. Nurses can work with families to change focus from managing the illness to comfort care strategies and working on the concept of “letting go” (Rolland, 2005a). During this time, an impor- tant nursing role is to help families with the cascade of decisions that occur in the terminal phase. Each family member will respond differently to the loss, and the family will be forever changed by the loss. The loss requires the family to adjust and adapt to the finality and to develop or generate a different sense of identity of family without the person (see Chapter 10).

Family Functioning Families, as a whole, experience health events. When family members become ill, it triggers a stress response in the family to adapt to the needs of the individual and the family member. As

presented earlier in the chapter, the demands of the illness can take multiple forms, depending on the illness type and the time phases of the illness. As each family is unique in its strengths and vulnerabil- ities, the ways in which families adapt to the chal- lenge of chronic illness are vast and too numerous to list, which reinforces the opening statements of this chapter that nurses who bring knowledge of a variety of models, theories, and conceptual frame- works to their practice tailor their practice to the family needs by building on the strength of families in creative ways.

Application of the Chronic Illness Framework to the Jones Family The Jones family is living with, adjusting to, and stressed and influenced by Linda’s chronic illness of multiple sclerosis (MS). The course of MS is a gradual onset of symptoms. Linda was diagnosed after the birth of her second child, Katie; therefore, the Jones family has been living with her chronic illness for 13 years. The course of illness for Linda is typical of many individuals with MS. For the first 10 years, or in the Jones’ case 13 years, of the dis- ease, the most common type of MS is relapsing MS (RMS), which is characterized by exacerbation (relapses and attacks) followed by partial recovery periods (remission) and no disease progression be- tween exacerbations. For most people with MS, after this initial course of disease, the presentation changes to progressive. At this point in time, Linda’s illness has morphed to secondary progres- sive MS (SPMS), which is characterized by a steadily worsening disease course with or without occasional exacerbations, minor partial recoveries, or plateaus until death. Approximately 50% of people with RMS will convert to SPMS within 10 years (Lewis, Dirksen, Heitkemper, Bucher, & Camera, 2011). The Jones family remains in the mid–time phase of the illness trajectory, but the change in the course of Linda’s illness brings with it increased incapacitation and an unpredictable outcome.

The Jones family is constantly adjusting and adapting to the course of Linda’s illness and in- creasing incapacitation. The family is exhausted with managing this change; solutions that have worked for this family in the past are not working now. The family roles need to be supported, rede- fined, or renegotiated. Each of the members is ex- periencing role stress and strain. Linda is having

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to “let go” of more of her mothering role and ac- tions. Her self-concept regarding her illness has been changed. Robert is having role overload with all the changes in his life. The intimacy needs of the couple are stressed by these changes. Amy is thinking of staying home and not going to college in another town. Katie is now a struggling student. Travis is a full-day student in a preschool. Grand- mother, Elise, will no longer be living independ- ently as she moves into the Jones family home to assume new roles as caretaker to the children and Linda. All the role changes, and seeing Linda get worse or more incapacitated, creates uncertainty about the future for each member and the family as a whole. Each family member experiences un- certainty differently based on age, family roles, role expectations, and the developmental needs of each person.

Family functioning is of central concern for the family nurse as he helps Linda and the family learn to adapt to new treatment and regimen manage- ment issues and establish a new normal day-to-day long-haul balance. One aspect of family function- ing the nurse can help with revolves around family roles. The nurse can assist by exploring options for care and potential future decisions the family may face as Linda’s health continues to decline and the time phase changes to terminal.

Strengths and Weaknesses of the Chronic Illness Framework The strength of this descriptive framework is that it outlines how multiple factors of a chronic illness can be grouped in a variety of ways that affect family functioning. Rolland’s (1987, 1994) con- ceptual framework depicts the complexity of chronic illness and the diversity of potential family responses to chronic illness. It may appear at first glance that families have similar circumstances given the same chronic illness, but on closer as- sessment it becomes clear that families’ experi- ences of the different components of this framework result in different family stressors and strengths.

The weakness of this model is the same as the strengths in that the complexity of chronic illness is not predictive. Because this framework depicts how the individual’s illness progresses from more of a medical model, it is easy for nurses to focus only on that part of the framework and not think about the overarching aspect of the family as a whole.

Family Assessment and Intervention Model The Family Assessment and Intervention Model, originally developed by Berkey and Hanson (1991), is based on Neuman’s Health Care Sys- tems Model (Hanson, 2001; Hanson & Mischke, 1996; Kaakinen & Hanson, 2010). Neuman’s model and theoretical constructs are based on systems theory and were extended and modified to focus on the family rather than on the individ- ual (Neuman & Fawcett, 2010). Figure 3-8 de- picts the Family Assessment and Intervention Model.

According to the Family Assessment and Inter- vention Model, families are viewed as a dynamic, open system interacting with their environment. One of the roles for families is to help buffer their members, or protect the family as a whole, from perceived threats to the family system. The core of the family system comprises basic family structure, function, processes, and energy/strength resources. This basic family structure must be protected at all costs, or the family ceases to exist. The family de- velops normal lines of defense as an adapting mech- anism and abstract flexible protective lines of defense when the system is threatened by signifi- cant stressors. Family systems are vulnerable to tensions produced when stressors in the form of problems or concerns penetrate the family’s lines of defenses. Families also have lines of resistance to help prevent penetration into the basic family core. The lines of defense and resistance depicted in the model (see Fig. 3-8) demonstrate how unexpected/ unwanted health status changes can affect the basic family unit or core.

Families are subject to imbalance from normal homeostasis when stressors (e.g., physical or mental health problems) penetrate families’ flexible and normal lines of defense. Furthermore, the stressors can challenge the families’ lines of resistance, which have been put in place to maintain stability and to prevent penetration of the basic family defense sys- tem. In other words, health events cause families to react to stressors created by changes in the health status of a family member. Families vary in their response to the stressors and in their ability to cope, depending on how deeply the stressors pen- etrate the basic family unit and how capable or ex- perienced the family is in adapting to maintain its stability.

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92 Foundations in Family Health Care Nursing

Area 1: Wellness-health promotion activities: problem identification and family factors at line of defense and resistance

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FIGURE 3-8 Family Assessment and Intervention Model.

Reconstitution or adaptation is the work the family undertakes to preserve or restore family sta- bility after stressors penetrate the family lines of defense and resistance. This process alters the whole of the family. The model addresses three areas: (1) wellness–health promotion activities— problem identification and family factors at lines of defense and resistance, (2) family reaction and in- stability at lines of defense and resistance, and

(3) restoration of family stability and family func- tioning at levels of prevention and intervention. The Family Assessment and Intervention Model focuses specifically on what causes family stress and how families react to this stress. One critical con- cept is to build on the family’s strengths by helping the family identify its problem-solving strategies. The basic assumptions of this family-focused model are listed in Box 3-1.

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Family Systems Stressor-Strength Inventory Berkey and Hanson (1991) developed an assess- ment, intervention, and measurement tool, the Family Systems Stressor-Strength Inventory (FS3I), to help guide nurses working with families who are undergoing stressful health events and to build on the strengths of the family. The FS3I is divided into three sections: (1) family systems stressor—general, (2) family stressors—specific, and (3) family system strengths. The tool helps nurses assess family stability by gathering infor- mation on family stressors and strengths. The as- sessment of general, overall stressors is followed by an assessment of specific issues or problems, such as birth of first child, automobile accident, or family divorce. The tool helps to identify fam- ily strengths to help determine potential or actual problem-solving abilities of the family system. Examples of family strengths could include sup- portive extended family, health insurance, and availability of family counseling.

The FS3I is intended for use with multiple fam- ily members. Individual members of the family can

complete the FS3I, or the entire family can sit together and complete the assessment. The nurse meets with family members and interviews them to clarify their perceived general stressors, specific stressors, and family strengths as identified by the family members.

After the interview, the nurse completes the quantitative summary and enters each respondent’s score on the graph. Recording individual scores on the graph allows for a comparison of the family re- sponses and visually shows the variability among family members’ perceptions of general and specific health stressors. The nurse synthesizes the inter- view information gleaned from all the family par- ticipants on the qualitative summary. Together, the nurse and family develop a family care plan with in- tervention strategies tailored to the individual fam- ily needs and built on the strengths of the family.

A major benefit of using the FS3I for family as- sessment and intervention planning is that both quantitative and qualitative data are used to deter- mine the level of prevention and intervention needed: primary, secondary, or tertiary (Pender, Murdaugh, & Parsons, 2006). Primary prevention

Theoretical Foundations for the Nursing of Families 93

BOX 3-1 Basic Assumptions for Family Assessment and Intervention Model

■ Although each family has a unique family system, all families have a common basic structure that is a com- posite of common, known factors or innate characteris- tics within a normal given range of response.

■ Family wellness is on a continuum of available energy to support the family system in its optimal state.

■ The family, in both a state of wellness or illness, is a dynamic composite of interrelationships of variables (physiological, psychological, sociocultural, developmental, and spiritual).

■ A myriad of environmental stressors can affect the fam- ily. Each stressor differs in its potential for disturbing the family’s stability level or normal line of defense. The specific family interrelationships (physiological, psycho- logical, sociocultural, developmental, and spiritual) af- fect the degree to which a family is protected by its flexible lines of defense against possible reactions to the stressors.

■ Families evolve a normal range of response to the envi- ronment, which is called a normal line of defense. The normal line of defense is flexible or accordion-like as it moves to protect the family.

■ When the flexible line of defense is no longer capable of protecting the family or family system against the environmental stressor, the stressor is said to break through the normal line of defense.

■ Families have an internal resistance factor called the line of resistance that functions to stabilize and return the family to its usual wellness state (normal line of de- fense), or possibly to a higher level of stability after an environmental stressor reaction.

■ Primary prevention is general knowledge that is applied in family assessment and intervention for identification and mitigation of risk factors associated with environ- mental stressors to prevent possible reaction.

■ Secondary prevention is symptomatology after reaction to stressors, appropriate ranking of intervention priori- ties, and treatment to reduce their noxious effects.

■ Tertiary prevention is the adjusting processes that take place as reconstitution begins and maintenance factors move the client back in the circular manner toward primary prevention.

■ The family is in a dynamic, constant energy exchange with the environment.

Adapted from Berkey, K. M., & Hanson, S. M. (1991). Pocket guide to family assessment and intervention. St. Louis, MO: Mosby–Year Book.

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focuses on moving the individual and family to- ward a state of improved health or toward health- promotion activities. Primary interventions include providing families with information about their strengths, supporting their coping and functioning capabilities, and encouraging movement toward health through family education. Secondary inter- ventions attain system stability after stressors or problems have invaded the family core. Secondary interventions include helping the family to handle its problems, helping family members to find and use appropriate treatment, and intervening in crises. Tertiary prevention is designed to maintain system stability through intervention strategies that are initiated after treatment has been completed. Coordination of care after discharge from the hos- pital and postdischarge rehabilitation services are examples of tertiary prevention.

The Family Assessment and Intervention Model focuses on the family as client. The Family Systems Stressor-Strength Inventory (FS3I) was developed to provide a concrete, focused assessment and interven- tion instrument that helps families identify current family stressors and strengths and that assists nurses and families in planning interventions to meet family needs. The model and inventory represent a nursing model made for nursing care of families. An updated blank copy of the instrument, with instructions for administration and a scoring guide, can be found in Appendix A. A summary of a completed instrument applied to the case study follows.

Application of the Family Assessment and Intervention Model With the Jones Family The FS3I was used to assess stressors (problems) and strengths (resources) that the Jones family had to cope with their situation. Robert and Linda were interviewed together by the nurse, but each person completed a separate FS3I. Scores were tallied using the scoring guide for the FS3I. Amy was away attending college, and Katie and Travis were too young to complete the assessment instrument.

The general stressors were viewed similarly by both Robert and Linda, and these stressors were assessed as more serious by the nurse than by the couple. Robert, Linda, and the nurse concurred that the general stress level was high. The specific stressors were perceived slightly differently by Robert and Linda. The following figures summa- rize information gained from the Jones family: Figure 3-9, which applies the FS3I to the Jones

Family; Figure 3-10, which presents an FS3I quan- titative summary of family system stressors, general and specific, for the Jones family; Figure 3-11, which lists FS3I family and clinician perception scores of the Jones family; Figure 3-12, which is an FS3I qualitative summary, family and clinician, of the Jones family; and Figure 3-13, which provides an FS3I family care plan for the Jones family.

The qualitative summary, family and clinician form in Figure 3-12, serves as the groundwork for the family care plan. This form synthesizes infor- mation pertaining to general stressors, specific stressors, family strengths, and the overall func- tioning and physical and mental health of the fam- ily members. The nurse completed this form using her assessment skills with information obtained from the verbal exchange and the FS3I.

The family members and the nurse perceived that the chronic and debilitating diagnosis of MS was the major general stressor. Linda’s specific stressors included her growing inability to func- tion as a wife and mother; her physical problems, such as increasing physical weakness, swallowing challenges, pain, vision impairment, vertigo/tinnitus, constipation, urinary infections; and her mental health issues, such as guilt, anxiety, and depression. Specific stressors for Robert included his worry about Linda’s health; loss of his life’s partner in taking care of the family, household maintenance, and raising children; fear of the unknown future and health outcomes; loss of sexual expression with his wife; and financial worries. The strengths of the family were seen as communication between the couple, religious faith, the social support net- work of extended family, and the availability of good health providers. The overall family func- tioning was considered to be as good as could be expected under the circumstances. Where the mother’s physical health was compromised, the father’s physical health was good. Both Linda and Robert expressed mental health concerns. Overall, the nurse perceived that this family had the strengths it needed to deal with both the general and specific stressors. After completing a genogram (Fig. 3-3) and ecomap (Fig. 3-4) of this family unit, the nurse concluded that the family was being supported by community/family re- sources. These social support systems are impor- tant factors in coping with stress, and the nurse concluded that this family could use assistance in utilizing these resources.

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Theoretical Foundations for the Nursing of Families 95

The Family Systems Stressor-Strength Inventory (FS 3 I) is an assessment and measurement instrument

intended for use with families (see Chapter 14). It focuses on identifying stressful situations occurring in families and the strengths families use to maintain healthy family functioning. Each family member is asked to complete the instrument on an individual form before an interview with the clinician. Questions can be read to members unable to read.

After completion of the instrument, the clinician evaluates the family on each of the stressful situations (general and specific) and the strengths they possess. This evaluation is recorded on the family member form.

The clinician records the individual family member’s score and the clinician perception score on the Quantitative Summary. A different color code is used for each family member. The clinician also completes the Qualitative Summary, synthesizing the information gleaned from all participants. Clinicians can use the Family Care Plan to prioritize diagnoses, set goals, develop prevention and intervention activities, and evaluate outcomes.

Family Name Jones Date April 18, 2009

Family Member(s) Completing Assessment Robert and Linda

Ethnic Background(s) “American all mixed up”

Religious Background(s) Protestant

Referral Source Neurologist For Linda

Interviewer Meredith Rowe, RN

noitacudE pihsnoitaleR ylimaF Members in Family Age Marital Status (highest degree) Occupation

1. Robert Father 48 yr Married MS Software engineer 2. rekam emoHdeirraMry 34rehtoMadniL 3. Amy Daughter 19 yr Single 4. Katie Daughter 13 yr Single 5. Travis Son 4 yr Single 6.

Family’s current reasons for seeking assistance:

Linda MS is progressing family feels stressed.

FIGURE 3-9 Family System Stressor-Strength Inventory: Jones family. (Source: Hanson, S. M. H. [2001]. Family health care nursing: Theory, practice, and research [2nd ed.]. Philadelphia, PA: F. A. Davis, with permission.)

The family care plan for the Jones family was developed by the nurse in concert with the family members who completed the FS3I (see Fig. 3-13). The family care plan addresses the diagnosis of general and specific family systems stressors and family systems strengths that support the family care plan and the goals of the family and the clinician(s): interventions/prevention

activities—primary/secondary/tertiary, and outcome/ evaluation/replanning proposed for this family. The goal of this family care plan was to achieve a restoration of optimum health that could provide homeostasis and stability for this family, as well as more positive health outcomes than the family could reach at the beginning of their health challenges. The outcome/evaluation/replanning

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96 Foundations in Family Health Care Nursing

DIRECTIONS: Graph the scores from each family member inventory by placing an “X” at the appropriate location. (Use first name initial for each different entry and different color code for each family member.)

YLIMAF)LARENEG( SROSSERTS SMETSYS YLIMAF SYSTEMS STRESSORS (SPECIFIC)

SCORES FOR FAMILY MEMBER CLINICIAN SCORES FOR FAMILY MEMBER CLINICIAN WELLNESS PERCEPTION PERCEPTION WELLNESS PERCEPTION PERCEPTION AND STABILITY SCORE SCORE AND STABILITY SCORE SCORE

0.50.5

X8.48.4 √1

6.46.4

4.4 X

4.4 X

4.2 X√1

4.2 X√2

4.0 X√ 0.42

8.38.3

6.36.3

4.34.3

2.32.3

0.30.3

8.28.2

6.26.2

4.24.2

2.22.2

0.20.2

8.18.1

6.16.1

4.14.1

2.12.1

0.10.1

*PRIMARY Prevention/Intervention Mode: Flexible Line 1.0-2.3 √1 = Robert *SECONDARY Prevention/Intervention Mode: Normal Line 2.4-3.6 *TERTIARY Prevention/Intervention Mode: Resistance Lines 3.7-5.0 √2 = Linda *Breakdowns of numerical scores for stressor penetration are suggested values.

FIGURE 3-10 Quantitative summary of family systems stressors, general and specific: Jones family.

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Theoretical Foundations for the Nursing of Families 97

DIRECTIONS: Graph the scores from the inventory by placing an “X” at the appropriate location and connect with a line. (Use first name initial for each different entry and different color code for each family member.)

FAMILY SYSTEMS STRENGTHS

SUM OF STRENGTHS

AVAILABLE FOR PREVENTION/ FAMILY MEMBER CLINICIAN

EROCS NOITPECREPEROCS NOITPECREPEDOM NOITNEVRETNI

5.0

4.8

4.6

4.4 X

4.2 √2

4.0

3.8

3.6

3.4 √1

3.2

3.0

2.8

2.6

2.4

2.2

2.0

1.8

1.6

1.4

1.2

1.0

3.2-0.1eniL elbixelF :edoM noitnevretnI/noitneverP YRAMIRP* √1 = Robert *SECONDARY Prevention/Intervention Mode: Normal Line 2.4-3.6 *TERTIARY Prevention/Intervention Mode: Resistance Lines 3.7-5.0 √2 = Linda *Breakdowns of numerical scores for stressor penetration are suggested values.

FIGURE 3-11 Family and clinician perception scores: Jones family.

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98 Foundations in Family Health Care Nursing

Summarize general stressors and remarks of family and clinician. Prioritize stressors according to importance to family members. The major general stressor of the family is the DX of MS and the impact of the progressive disabling illness on the entire family.

A. Summarize specific stressors and remarks of family and clinician. Linda’s specific stressors: growing disability to function as wife/mother, physical signs of impairment and guilt, anxiety, and depression. Robert’s specific stressors: loss of fully functional wife, fear of unknown; loss of sexual expression and finances.

B. Summarize differences (if discrepancies exist) between how family members and clinicians view effects of stressful situation on family. Each family member has some different stressors, but share in common the fears, anxiety, helplessness, sadness over their losses due to Linda’s condition. Nurse views general and specific stressors higher than family rates them.

C. Summarize overall family functioning. Functioning as best as can be expected. Physical health in question. Mental health standing up so far. Family addressing issues one by one.

D. Summarize overall significant physical health status for family members. Mother’s physical health compromised. Father’s physical health is okay.

E. Summarize overall significant mental health status for family members. Mother is frustrated and anxious. Expressed guilt, which makes her depressed. Father is also frustrated and worried about Linda, the children, and finances.

Summarize family systems strengths and family and clinician remarks that facilitate family health and stability. Couple communication, religious faith, social support of extended family and believe they have competent caring health care providers.

FIGURE 3-12 Qualitative summary, family and clinician: Jones family.

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Theoretical Foundations for the Nursing of Families 99

Prevention/Intervention Mode

Diagnosis: General and Specific Family System Stressors

Dx of MS weakness of swallowing, pain, vision impairment, vertigo/tinnitus, constipation, urinary infections, guilt/anxiety, depression, sexual dysfunction, over- load for caregiver father.

Couple communication, religious faith, social support of extended family, good medical care.

Restoration of stability and homeostasis at each level of progressive chronic illness.

Support of family changes, connect family with MS family support group, locate part-time family helper for home, coordinate with other medical groups involved, set up rehabilitation, and physical therapy.

Couple receives counseling, pain and symptom management; involve social worker to look at community agencies to offer assistance.

Evaluation to be done once plan implemented.

Family Systems Strengths Supporting

Family Care Plan

Primary, Secondary, or Tertiary

Prevention/ Intervention Activities

Outcomes Evaluation and Replanning

Goals for Family and Clinician

FIGURE 3-13 Family care plan: Jones family.

section of the family care plan remains blank for now because it is dependent on feedback from the interventions proposed for the family, as well as the physical and mental health status of the entire family.

Strengths and Weaknesses The strength of the FS3I approach is that both quantitative and qualitative data are used to deter- mine the level of prevention and intervention needed: primary, secondary, or tertiary. The in- strument is brief, is easy to administer, and yields data to compare one family member with another member and one family with another family. The weakness of this model and instrument is that they focus only on family strengths and stressors rather than all the dimensions of the family as a unit. This model and instrument hold much promise for nurs- ing assessment of families, but more work needs to be done on this approach. See Box 3-2 for a com- parison of the approaches.

SUMMARY

By understanding theories and models, nurses are better prepared to think creatively and critically about how health events affect the family. This chapter introduced nurses to the concept of theory- guided, evidence-based family nursing practice. It presented the relationship between theory,

practice, and research, and explained crucial as- pects of theory. The chapter then explored five theories and models for the nursing care of fami- lies and applied the theories to the case study in the chapter:

■ Family Systems Theory ■ Developmental and Family Life Cycle Theory ■ Bioecological Theory ■ Chronic Illness Framework ■ Family Assessment and Intervention Model

The chapter revealed how nurses can practice family nursing differently with the Jones family ac- cording to the different theoretical perspectives.

The following points highlight critical concepts that are addressed in this chapter:

■ No single theory, model, or conceptual framework adequately describes the complex relationships of family.

■ No one theoretical perspective gives nurses a sufficiently broad base of knowledge and understanding to guide assessment and interventions with all families.

■ No one theoretical perspective is better, more comprehensive, or more correct than another.

■ Nurses who draw from multiple theories are more effective in tailoring their nursing practice and family interventions. Using multiple theories substantially increases the

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BOX 3-2 Comparison of Theories as They Apply to the Jones Family

Family Systems Theory Conceptual Family is viewed as a whole. What happens to the family as a whole affects each individual family member, and what happens to individuals affects the totality of the fam- ily unit. Focus is on the circular interactions among mem- bers of the family system, resulting in functional or dysfunctional outcomes.

Assessment The family may be assessed together or individually. Assessment questions relate to the interaction between the individual and the family, and the interaction between the family and the community in which the family lives.

Intervention Examples ■ Complete a family genogram to understand patterns

and relationships over several generations over time. ■ Complete family ecomap to see how individuals/family

relate to the community around them. ■ Collect data about the family as a whole and about

individual family members. ■ Conduct care-planning sessions that include family

members.

Strengths Focus is on family as a whole or its subsystems, or both. It is a generally understood and accepted theory in society.

Weaknesses Theory is broad and general. It does not give definitive prescriptions for interventions.

Application to Jones Family All members of the Jones family are affected by the mother’s progressive chronic health condition and changes. Family structure, functions, and processes of the family are influenced, changing family roles and dynamics. Everyone in the family has his or her own concerns and needs attention from health care professionals.

Family Developmental and Life Cycle Theory Conceptual Family is viewed as a whole over time. All families go through similar developmental processes starting with the birth of the first child to death of the parents. Focus is on the life cycle of families and represents normative stages of family development.

Assessment The family may be assessed together or individually. As- sessment questions relate to the normative predictable events that occur in family life over time. It also includes nonnormative, unexpected events.

Intervention Examples ■ Conduct family interview to determine where family is

in terms of cognitive, social, emotional, spiritual, and physical development.

■ A family genogram and ecomap should be completed. ■ Determine the normative and nonnormative events that

have occurred to the family as a whole or to individuals within the family.

■ Analyze how an individual’s growth and developmental milestones may affect the family developmental trajectory.

Strengths Focus is on the family as a whole. The theory provides a framework for predicting what a family will experience at any given stage in the family life cycle so that nurses can offer anticipatory guidance.

Weaknesses The traditional linear family life cycle is no longer the norm. Modern families vary widely in their structure and roles. Divorce, remarriage, gay parents, and never-married parents have changed the traditional trajectory of growth and developmental milestones. The theory does not focus on how the family adapts to the transitions from one stage to the other; rather, it simply predicts what transitions will occur.

Application to Jones Family The Jones family is in the stages of “families with adoles- cents” and “launching young adults.” The nonnormative health condition of the mother is changing the predictable normative course of development for the individuals and for the family as a whole. These health events will change the cognitive, social, emotional, spiritual, and physical de- velopment as the family shifts to integrate new roles into their lives as family members.

Bioecological Systems Theory Conceptual Bioecological systems theory combines children’s biologi- cal disposition and environmental forces that come to- gether to shape the development of human beings. This theory has a basis in both developmental theory and sys- tems theory to understand individual and family growth. It combines the influence of both genetics and environ- ment from the individual and family with the larger eco- nomic/political structure over time. The basic premise is that individual and family development are contextual over time. The different levels of the theory that apply to the family at any one point in time vary depending on what is happening at that time. Therefore, the interaction of the systems vary over time as the situation changes.

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Theoretical Foundations for the Nursing of Families 101

BOX 3-2 Basic Assumptions for Family Assessment and Intervention Model—cont’d

Assessment Assess all levels of the larger ecological system when interviewing the family. Determine the microsystem, mesosystem, exosystem, macrosystem, and chronosys- tem of the individual and of the family as a whole.

Intervention Examples ■ Conduct a family interview to determine the family’s sta-

tus in relationship to four locational/spatial contexts and one time-related context.

■ A family genogram and ecomap should be completed. ■ Determine how individuals are doing in relationship to

their entire environment, which includes immediate family, extended family, home, school, and community.

■ Analyze the family in its smaller and larger contextual aspects.

Strengths Focus is on a holistic approach to human/family develop- ment. A bio/psycho/socio/cultural/spiritual approach to understanding how individuals and families develop and change/adapt over time in their society is a more com- plete approach.

Weaknesses This holistic approach is not specific enough to define contextual changes over time. Nor can the larger context in which individuals/families are embedded be predicted or controlled.

Application to Jones Family ■ Microsystem: The Jones family consists of school-age

children living at home. The parental roles have been traditional until recent health events.

■ Mesosystem: Family has much interaction with schools, church, and extended family.

■ Exosystem: Family influenced by father’s work at the fac- tory and other institutions in the community.

■ Macrosystem: Family consistent with community culture, attitudes, and beliefs. Their community is largely Cau- casian, middle class, and Christian.

■ Chronosystem: At this time in the illness story of the Jones family with the mother’s illness changing, the family situation changes and moves between stability and crisis.

Chronic Illness Framework Conceptual This is a conceptual framework and not a theory. There- fore, each aspect of the framework represents several fields of inquiry relative to chronic illness. The framework has been built and data have been organized to provide a coherent way of thinking about families when a member

has a chronic illness. The areas of inquiry that inform this model are onset of the chronic illness, course of illness, outcome or trajectory of the chronic illness, outcome rela- tive to degree of incapacitation from the illness, time phase of the illness, and family functioning.

Assessment In this framework, it is important first to analyze the vari- ous aspects of the specific type of chronic illness. Each aspect presents a different type of stress or challenge for the family based on the particular chronic illness. The last aspect of the framework, family function, requires the family nurse to explore how the specific chronic illness affects this specific family based on the demands of the illness and the family strengths and vulnerabilities.

Intervention Examples ■ Complete a family genogram and ecomap. ■ Implement a plan of care to help facilitate family adap-

tation and coping strategies. ■ Work with families by building on the family strengths to

adjust family roles to help the family with managing the stressors identified in this specific chronic illness for this specific family.

Strengths The Chronic Illness Framework is designed to support family-centered nursing care. Focus is on family strengths and vulnerabilities through identified predictable stressors experienced by families who are in that aspect of the chronic illness. Anticipatory guidance can be provided as the chronic illness may progress through typical trajecto- ries or times phases.

Weaknesses The model is not specific enough to identify precise ways families adapt; rather, it is more of a guideline to typical stressors and coping tasks that may happen when a fam- ily member develops a chronic illness.

Application to Jones Family The Jones family is struggling to adapt during the rocky chronic illness phase. As the mother’s illness has changed from being episodic to progressive in nature, the family is stressed with adapting to the mother losing ambulation and needing more physical support than in the past. The family is in a constant state of stress as it adjusts to the new patterns, regimens, and roles. The family is grieving as Linda becomes more disabled.

Family Assessment and Intervention Model Conceptual Families are viewed as dynamic, open systems in interac- tion with their environment. A major role of family is to

Continued

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102 Foundations in Family Health Care Nursing

BOX 3-2 Basic Assumptions for Family Assessment and Intervention Model—cont’d

help protect itself from events such as illness that may threaten the family’s inner core. The inner core of the family consists of family structure, function, process, and energy/strength resources and must be protected or the family ceases to exist. Adaptation is the work the family undertakes to preserve/restore family stability. This model evolved out of nursing and builds on general systems theory, stress theory, and change theory.

Assessment Family may be assessed together, but all individuals are asked to complete the measurement instrument. The Family Systems Stressor-Strength Inventory (FS3I) is administered to determine general family stressors, spe- cific family stressors, and family system strengths. The stressors that affect the balance of the family strengths are analyzed to assist the family to achieve stability.

Intervention Examples ■ The FS3I is completed by all adult individuals in the

family. Scores are derived from the measurement scales and then analyzed. Health care providers meet with families to review results and provide different interven- tion strategies based on the specific stressors, how the family is coping, and what strengths are brought to the situation.

■ A family genogram and ecomap should be completed.

Strengths The model and instrument provide a structured approach to family assessment and intervention based on both quantitative and qualitative data. These data help deter- mine the primary, secondary, and tertiary levels of preven- tion and intervention. The focus on family strengths is unique to this model and approach.

Weaknesses This model is used specifically when families enter the health care system. It is applicable when health problems have come up that cause stressors. Although the model per se is applicable to all families in terms of life stressors and strengths, the administration of the FS3I is specific to only these two aspects of the health events.

Application to Jones Family The adults in this family were interviewed together, with each person completing the FS3I. General stressors and specific stressors were rated similarly by each member of the couple. The nurse also rated her per- ceptions of the family stressors and strengths. Overall family physical and mental functioning were also rated. The nurse concluded that this family had the strengths it needed to deal with both the general and specific stressors.

likelihood that the family will be able to achieve stability and health as a family unit.

■ Theories that inform the nursing of families should be the “gold standard” of nursing practice (Segaric & Hall, 2005); hence, family nursing is a theory-guided, evidence-based nursing practice.

This chapter presents ways of providing excel- lent family health care nursing that is theory driven and evidence based. By using different lenses to view family care problems, different solutions and options for care and interventions become avail- able. Clearly, no one theoretical perspective gives all nurses in all settings a sufficiently broad base of knowledge on which to assess and intervene with the complex health events experienced by families. What is crucial is that nurses use multiple theoret- ical perspectives to guide their practice with the nursing care of families.

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105

Family Nursing Assessment and Intervention

c h a p t e r 4

Joanna Rowe Kaakinen, PhD, RN

Aaron Tabacco, BSN, RN, Doctoral Candidate

C r i t i c a l C o n c e p t s

■ Families are complex social systems with which nurses interact in many ways and in many different contexts; the use of a logical systematic family nursing assessment approach is important.

■ In the context of family nursing, the creative nurse thinker must be aware of possibilities, be able to recognize the new and the unusual, be able to decipher unique and complex situations, and be inventive in designing an approach to family care.

■ Nurses determine through which theoretical and practice lens(es) to analyze the family event.

■ Knowledge about family structures, functions, and processes inform nurses in their efforts to optimize and provide in- dividualized nursing care, tailored to the uniqueness of every family system.

■ Nurses begin family assessment from the moment of contact or referral.

■ Family stories are narratives that nurses construct in framing, contextualizing, educating, communicating, and provid- ing interpretations of their family clients’ needs as they exercise clinical judgment in their work.

■ Interacting with families as clients requires knowledge of family assessment and intervention models, as well as skilled communication techniques so that the interaction will be effective and efficient for all parties.

■ The family genogram and ecomap are both assessment data-gathering instruments. The therapeutic interaction that occurs with the family while diagramming a genogram or ecomap is itself a powerful intervention.

■ Families’ beliefs about health and illness, about nurses and other health care providers, and about themselves are es- sential for nurses to explore in order to craft effective approaches to family interventions and promote health literacy.

■ Families determine the level of nurses’ involvement in their health and illness journeys, and nurses seek to tailor their work and approach accordingly.

■ Nurses and families who work together and build on family strengths are in the best position to determine and priori- tize specific family needs; develop realistic outcomes; and design, evaluate, and modify a plan of action that has a high probability of being implemented by the family.

■ The final step in working with families should always be for nurses to engage in critical, creative, and concurrent re- flection about the family, their work with the family, and professional self-reflection of their practice.

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Families are complex social systems. Therefore, the use of logical, systematic approaches to assess and intervene with family clients is essential for several reasons: (1) to ensure that the needs of the family are met, (2) to uncover any gaps in the family plan of action, and (3) to offer multiple supports and re- sources to the family. Nurses use a variety of as- sessment models to collect information about families. In concert with the family, this informa- tion is used to develop the interventions families use to manage their current health event. Some as- sessment and intervention instruments are based on theoretical models, and some are developed using a psychometric approach to instrument de- velopment. Built on the traditional nursing process as visualized by Doenges, Moorhouse, and Murr (2013) (Fig. 4-1) and combined with the Outcome Present State Testing Model (Pesut & Herman, 1999), this chapter presents a dynamic systematic critical reasoning method to conducting a family as- sessment and tailoring interventions to meet family needs (Fig. 4-2) and applies it to a case study. The chapter explores assessment strategies, including how to select assessment instruments, determine the need for interpreters, assess for health literacy, diagram family genograms, and develop family ecomaps. Intervention strategies follow assessment strategies to assist nurses and families in shared de- cision making. The chapter concludes with a brief

introduction to three family assessment and inter- vention models that were developed by nurses.

FAMILY NURSING ASSESSMENT

Central to the delivery of safe and effective family nursing care is the nurse’s ability to make accurate assessments, identify health problems, and tailor plans of care. Each step of working with families, whether applied to individuals within the family or the family as a whole, requires a thoughtful, delib- erate reasoning process. Nurses decide what data to collect and how, when, and where those data are collected. Nurses determine the relevance of each new piece of information and how it fits into the emerging family story. Before moving forward, nurses decide whether they have obtained sufficient information on problem and strength identifica- tion, or whether gaps exist that require additional data gathering.

Nurses must always be aware that “common” in- terpretations of data may not be the “correct” in- terpretation in any given situation, and that commonly expected signs and symptoms may not appear in every case or in the same data pattern presentation. The ability of nurses to be open to the unexpected and to be alert to unusual or differ- ent responses is critical to determining the primary

106 Foundations in Family Health Care Nursing

NURSE

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needs confronting the family. Nurses should be able to perceive that which is not obvious and to understand how this family story is similar to or different from other family stories.

The family nursing assessment includes the fol- lowing steps:

■ Assessment of the family story: The nurse gathers data from a variety of sources to see the whole picture of the family experience.

■ Analysis of family story: The nurse clusters the data into meaningful patterns to see how the family is managing the health event. The family needs are prioritized using a Family Reasoning Web.

■ Design of a family plan of care: Together, the nurse and family determine the best plan of care for the family to manage the situation.

■ Family intervention: Together, the nurse and family implement the plan of care incorporat- ing the most family-focused, cost-effective, and efficient interventions that assist the fam- ily to achieve the best possible outcomes.

■ Family evaluation: Together, the nurse and family determine whether the outcomes are being reached, are being partially reached, or need to be redesigned. Is the care plan

working well, does a new care plan need to be put into place, or does the nurse/family relationship need to end?

■ Nurse reflection: Nurses engage in critical, creative, and concurrent reflection about them- selves and their own family experiences, the family client, and their work with the family.

Engaging Families in Care

Background and First Contact Nurses encounter families in diverse health care settings for many different kinds of problems and circumstances. Every family has a story about how the potential or actual health event influences its individual members, family functioning, and man- agement of the health event. Nurses are charged with gathering, sifting, organizing, and analyzing the data to craft a clear view of the family’s story. Nurses filter data gathered in the story through dif- ferent views or approaches, which affects how they think about the family as a whole and each individ- ual family member. For example, a family who is faced with a new diagnosis of a chronic illness would have different needs than a family who is faced with a member dying of an end-stage chronic

Family Nursing Assessment and Intervention 107

FIGURE 4-2 Family nursing assessment model.

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illness. Nurses might use different strategies if the patient is in the acute hospital setting, is in an as- sisted living center, or is living at home.

The underlying theoretical approach used by the nurses working with families influences how they ask questions and collect family data. For example, if the family is worried about how their 2-year-old child will react to a new baby, such as in the Bono family case study presented later in this chapter, the nurse may elect to base the assessment and interventions on a family systems theoretical view, or the devel- opmental family life cycle theoretical view. Refer to Chapter 3 for a detailed discussion of working with families from different theoretical perspectives.

Data collection, which is the first part of assess- ment, involves both subjective and objective family information that is obtained through direct obser- vation, examination, or in consultation with other health care providers. In all cases, family assess- ment begins from the first moment that the family is referred to the nurse. Following are some cir- cumstances in which a family is referred to a nurse:

■ A family is referred by the hospital to a home health agency for wound care on the feet of a client with diabetes.

■ A couple seeks advice for managing their busy life with three children as the mother returns home from the hospital following an unplanned cesarean section.

■ A family calls the Visiting Nurse Association to request assistance in providing care to a family member with increasing dementia.

■ A school nurse is asked by the school psy- chologist to conduct a family assessment with a family who is suspected of child neglect.

■ A physician requests a family assessment with a child who has nonorganic failure to thrive.

■ A family with a member with critical care needs is asked to make decisions about life-sus- taining treatments in the intensive care unit.

Making Community-Based Appointments As soon as a family is identified, the nurse begins to collect data about the family story. Sources of data that can be collected before contacting a fam- ily for a home or clinic appointment are listed in Box 4-1. Specifically, the nurse needs to know the following information:

■ The reason for the referral or requested visit ■ The family knowledge of the visit or referral

■ Specific medical information about the family member with the health problem

■ Strategies that have been used previously ■ Insurance sources for the family ■ Family problems identified by other health

providers ■ Family demographic data, when available,

such as the number of people and ages of family members or basic cultural background information

■ The need for an interpreter

Before contacting the family to arrange for the initial appointment, the nurse decides whether the most appropriate place to conduct the appointment is in the family’s home or the clinic/office. The type of agency where the nurse works may dictate this decision. Advantages and disadvantages of a home setting and a clinic setting are listed in Table 4-1.

Contacting the family for the appointment pro- vides valuable information about the family. It is im- perative that the nurse be confident and organized when making the initial contact. Information that is important for the nurse to note is whether the family acts surprised that the referral was made, shows reluctance in setting up a meeting, or ex- presses openness about working together. The fam- ily also gathers important information about the nurse during the initial interaction. For example, family members will notice whether the nurse takes time to talk with them, uses a lot of words they do not understand, or appears organized and open to working with the family. To facilitate the best pos- sible outcomes in engaging families for the first time to learn about their health and illness story, effective nurses consider the family and its needs as central to starting a successful collaboration.

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BOX 4-1 Sources of Pre-encounter Family Data

■ Referral source: includes data that indicated a problem for this family, as well as demographic information

■ Family: includes family members’ views of the prob- lem, surprise that the referral was made, reluctance to set up the meeting, avoidance in setting up the ap- pointment

■ Previous records: in the health care systems or that are sent by having the client sign a release for information form, such as process logs, charts, phone logs, or school records

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This relationship of trust begins from the moment of first contact with families. As a guide, Box 4-2 outlines steps to follow when making an appoint- ment with a family.

Family Assessments in Acute Care Settings Nurses in acute care settings encounter families of their individual patients on a daily basis. The de- gree to which nurses feel comfortable and to which they demonstrate clinical competence engaging families varies widely. Because cost (which is con- strained) determines length of stay, and because of the increasing population of people with chronic

illnesses who experience poor symptom manage- ment, nurses in acute care settings often feel there is little time to engage families effectively. Lack of time, in fact, has been identified by nurses as the primary barrier to engaging families, though there are many other barriers as well, including nurse bias, safety concerns, and negative nurse attitudes about working with families (Duran, Oman, Abel, Koziel, & Szymanski, 2007; Gurses & Carayon, 2007; Svavarsdottir, 2008). It is critical that nurses gain skill and comfort with families in acute care settings as families are the primary caregivers fol- lowing the discharge of their family members. Families need the help of nurses in order to learn how to provide effective postdischarge care tasks; engage in shared decision making with health care providers; understand the current health status of their ill family member; balance admission and postdischarge family life demands; assist families during critical events such as resuscitation; and solve ethical dilemmas that arise in the care of their loved one. With this extensive list of needs, it is es- sential that nurses in acute care settings intention- ally and effectively engage families.

Nurses in acute care settings encounter a num- ber of challenges, including caring for several acutely ill persons simultaneously, managing the informational needs of interdisciplinary providers, and coping with a host of distractions that often keep nurses away from the bedside. Therefore,

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Table 4-1 Advantages and Disadvantages of Home Visits Versus Clinic Visits

Home Visit

Advantages • Opportunity to see the everyday family environment. • Observe typical family interactions because the family

members are likely to feel more relaxed in their physical space.

• More family members may be able to attend the meeting. • Emphasizes that the problem is the responsibility of the

whole family and not one family member.

Disadvantages • Home may be the only sanctuary or safe place for the

family or its members to be away from the scrutiny of others. Therefore, conducting the meeting in the home would invade or violate this sanctuary and bring the clinical perspective into this safe world.

• The nurse must be highly skilled in communication, specifically setting limits and guiding the interaction, or the visit may have a more social tone and not be efficient or productive.

Clinic Visit

• Conducting the family appointment in the office or clinic al- lows for easier access to consultants.

• The family situation may be so strained that a more formal, less personal setting will facilitate discussions of emotion- ally charged issues.

• May reinforce a possible culture gap between the family and the nurse.

BOX 4-2 Setting Up Family Appointments

■ Introduce yourself. ■ State the purpose of the requested meeting, including

who referred the family to the agency. ■ Do not apologize for the meeting. ■ Be factual about the need for the meeting but do not

provide details. ■ Offer several possible times for the meeting, including

late afternoon or evening. ■ Let the family select the most convenient time that

allows the majority of family members to attend. ■ Offer services of an interpreter, if required. ■ Confirm date, time, place, and directions.

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nurses seeking to engage families, complete family assessments, and implement family interventions must be highly efficient and creative. A number of specific strategies and tools must be used to accom- plish a meaningful and effective experience. For an in-depth discussion of acute care family nursing needs, refer to Chapter 14.

Using Interpreters With Families It is critical for the nurse to determine whether an interpreter is needed during the family meeting, be- cause the number of families who do not speak Eng- lish is increasing. For 55.4 million Americans, English is not the primary language spoken in the home, and 13.6 million of these people speak English poorly or not at all (U.S. Census Bureau, 2010). Lan- guage barriers have been found to complicate many aspects of patient care, including comprehension and adherence to plans of care. Furthermore, language barriers have been found to contribute to adverse health outcomes, compromised quality of care, avoidable expenses, dissatisfied families, and in- creased potential for medical mistakes (Flores, Abreu, Barone, Bachur, & Lin, 2012; Schenker, Wang, Selig, Ng, & Fernandez, 2007). Thus, it is essential that nurses who are not bilingual use interpreters when working with non–English-speaking families.

The types of interpreters that nurses solicit to help work with families have the potential to influ- ence the quality of the information exchanged and the family’s ability to follow the suggested plan of action. One of the most common types of inter- preters used are bilingual family members or friends, called ad hoc family interpreters. The prob- lems with using family members as interpreters are that they have been found to buffer information, alter the meaning of the content, or make the de- cision for the person for whom they are interpret- ing (Flores et al., 2012; Ledger, 2002). The ad hoc family member interpreter also has been found to lack important language skills, especially when it comes to medical interpretation (Flores et al., 2012; Khwaja et al., 2006; Ledger, 2002). If the ad hoc family member interpreter is a child, the informa- tion that is being discussed may be frightening or the topic may be too personal and sensitive (Ledger, 2002). Using ad hoc family interpreters also raises confidentially issues (Gray, Hilder, & Donaldson, 2011). Therefore, it is not ideal for nurses to use a family member for interpretation, especially if another choice is available.

If a qualified medical interpreter cannot come to the meeting in the family home, the nurse should plan to use a speaker phone so that the professional interpreter can be involved in the conversation with the family. One of the problems with using an in- terpreter on the phone is that interpreters do not have the advantage of seeing the family members in person and cannot observe nonverbal commu- nication (Bethell, Simpson, & Read, 2006; Gray et al., 2011; Herndon & Joyce, 2004). Also, the nurse should be aware that using a telephone inter- preter introduces another outside person into the family setting, which may be perceived as imper- sonal by the family (Bethell et al., 2006).

Family-Centered Meetings and Care Conferences Family-centered care (FCC) principles should be applied in all interactions between nurses and fam- ilies or other health care providers. According to the Institute for Patient and Family Centered Care (IPFCC) (2013), the core principles of FCC are re- spect and dignity, information sharing, participa- tion, and collaboration. The goal of FCC is to increase the mutual benefit of health care provision for all parties, with a focus on improving the satis- faction and outcomes of health care for families (IPFCC, 2013). By utilizing these principles in all aspects of the family nursing approach from assess- ment through intervention and evaluation, nurses can facilitate exchanges of shared expertise, which lead to better holistic health outcomes.

During the initial interaction with families, it is critical for nurses to introduce themselves to the family, meet all the family members present, learn about the family members not present, clearly state the purpose for working with the family, outline what will happen during this session, and indicate the length of time the meeting will last. Taking these actions demonstrates respect for family mem- bers and their unique story. To continue with this precedent, the nurse needs to develop a systematic plan for the first and all following family meetings. This focus on respect, dignity, and collaboration in initial meetings helps to establish relationships that are therapeutic; effective, satisfying partnerships between nurses and families are critical as they work together toward health-related goals.

Nurses who use a therapeutic approach to family meetings have found that their focus on family-centered care increased, and that their

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communication skills with families became more fluid with experience (Harrison, 2010; Martinez, D’Artois, & Rennick, 2007). When nurses use therapeutic communication skills with families, the families report feeling a stronger rapport with the nurse, an increased frequency of communication between families and the nurse occurs, and families perceive these nurses to be more competent (Harrison, 2010; Martinez et al., 2007).

Conducting family meetings not only requires skilled communication strategies but also requires knowledge of family assessment and intervention models. Nurses use a variety of data collection and assessment instruments to help gather information in a systematic and efficient manner. Therefore, it is important that the instruments be carefully se- lected so they are family friendly and render infor- mation pertinent to the purpose of working with the family.

FAMILY NURSING ASSESSMENT MODELS AND INSTRUMENTS

Nurses practice family nursing using a variety of tools. The following three family assessment models have been developed by family nurses. The Family Assessment and Intervention Model and the FS3I were developed by Berkey-Mischke and Hanson (1991). Friedman developed the Friedman Family Assessment Model (Friedman et al., 2003). The Calgary Family Assessment Model (CFAM) and Calgary Family Intervention Model (CFIM) were developed by Wright and Leahey (2013). These three approaches vary in purpose, unit of analysis, and level of data col- lected. Table 4-2 has a detailed comparison of the essential components of these three family assess- ment models.

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Table 4-2 Comparison of Family Assessment Models Developed by Family Nurses

Name of model

Citation

Purpose

Theoretical underpinnings

Level of data collected

Settings in which primarily used

Units of analysis

Calgary Family Assessment and Intervention Model

Wright & Leahey (2013)

Conceptual model and mul- tidimensional approach to families that looks at the fit among family functioning, affective, and behavioral aspects

Systems: Cybernetics Communica- tion Change Theory

Qualitative: Nominal

Outpatient Community

Family as system

Friedman Family Assess- ment Model

Friedman, Bowden, & Jones (2003)

Concrete, global family as- sessment interview guide that looks primarily at fami- lies in the larger community in which they are embedded

Developmental Structural-functional Family stress-coping Environmental

Qualitative: Nominal

Outpatient Community

Family as client Family as component of society

Family Assessment and In- tervention Model and the Family System Stressor- Strength Inventory (FS3I)

Berkey-Mischke & Hanson (1991) Hanson (2001)

Concrete, focused measure- ment instrument that helps families identify current family stressors and builds interventions based on family strengths

Systems: Family systems Neuman systems

Model: Stress-coping theory

Quantitative: Ordinal and interval

Qualitative: Nominal

Inpatient Outpatient Community

Family as context Family as client Family as system Family as component of society

(continued)

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Family Assessment and Intervention Model The Family Assessment and Intervention Model, originally developed by Berkey-Mischke and Hanson (1991), is presented in greater detail in Chapter 3, but is worth exploring in this context as well. The Family Assessment Intervention Model is based on Neuman’s health care systems model (Kaakinen & Hanson, 2005).

According to the Family Assessment and Inter- vention Model, families are subject to tensions when stressed. The family’s reaction depends on how deeply the stressor penetrates the family unit and how capable the family is of adapting to main- tain its stability. The lines of resistance protect the family’s basic structure, which includes the family’s functions and energy resources. The family core contains the patterns of family interactions and strengths. The basic family structure must be pro- tected at all costs or the family ceases to exist. Re- constitution or adaptation is the work the family undertakes to preserve or restore family stability. This model addresses three areas: (1) health pro- motion, wellness activities, problem identification, and family factors at lines of defense and resistance; (2) family reaction and instability at lines of defense and resistance; and (3) restoration of family stability and family functioning at levels of prevention and intervention.

The FS3I is the assessment and intervention tool that accompanies the Family Assessment and In- tervention Model. The FS3I is divided into three sections: (1) family systems stressors—general; (2) family stressors—specific; and (3) family system strengths. An updated copy of the instrument, with

instructions for administration and a scoring guide, can be found in Appendix A.

Nurses can assess family stability by gathering in- formation on family stressors and strengths. The nurse and family work together to assess the family’s general, overall stressors, and then specific family problems. Identified family strengths give an indi- cation of the potential and actual problem-solving abilities of the family system. A plus to the FS3I ap- proach is that both quantitative and qualitative data are used to determine the level of prevention and intervention needed. The family is actively involved in the discussions and decisions. Moreover, this as- sessment and intervention approach focuses on family stressors and strengths, and provides a theo- retical structure for family nursing.

Friedman Family Assessment Model The Friedman Family Assessment Model (Friedman et al., 2003) is based on the structural-functional framework and developmental and systems theory. This assessment model takes a macroscopic approach to family assessment by viewing families as subsystems of the wider society, which includes institutions de- voted to religion, education, and health. Family is considered an open social system and this model fo- cuses on family’s structure, functions (activities and purposes), and relationships with other social systems. The Friedman model is commonly used when the family-in-community is the setting for care (e.g., in community and public health nursing). This approach enables family nurses to assess the family system as a whole, as a subunit of the society, and as an interac- tional system. Box 4-3 delineates the general assump- tions of this model (Friedman et al., 2003, p. 100).

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Table 4-2 Comparison of Family Assessment Models Developed by Family Nurses—cont’d

Strengths

Weaknesses

Conceptually sound

Not concrete enough to be useful as a guideline unless the provider has studied this model and approach in detail

Comprehensive list of areas to assess family

Large quantities of data that may not relate to the problem No quantitative data

Short Easy to administer Yields data to compare one family member with another family member Assess and measure focused presenting problem

Narrow variable

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Structure refers to how a family is organized and how the parts relate to each other and to the whole. The four basic structural dimensions are role sys- tems, value systems, communication networks, and power structure. These dimensions are interrelated and interactive, and they may differ in single-par- ent and two-parent families. For example, a single mother may be the head of the family, but she may not necessarily take on the authoritarian role that a traditional man might in a two-parent family. In turn, the value systems, communication networks, and power structures may be quite different in the single-parent and two-parent families as a result of these structural differences.

Function refers to how families go about meet- ing the needs of individuals and meeting the pur- poses of the broader society. In other words, family functions are what a family does. The functions of the family historically are discussed in Chapter 1, but the following specific family functions are con- sidered in this approach:

■ Pass on culture, religion, ethnicity. ■ Socialize young people for the next genera-

tion (e.g., to be good citizens, to be able to cope in society through education).

■ Exist for sexual satisfaction and reproduction. ■ Provide economic security. ■ Serve as a protective mechanism for family

members against outside forces. ■ Provide closer human contact and relations.

The Friedman Family Assessment Model form consists of six broad categories of interview ques- tions: (1) identification data, (2) developmental

stage and history of the family, (3) environmental data, (4) family structure (i.e., role structure, family values, communication patterns, power structure), (5) family functions (i.e., affective functions, social- ization functions, health care functions), and (6) family stress and coping. Each category has sev- eral subcategories (Friedman et al., 2003).

Friedman’s assessment was developed to provide guidelines for family nurses who are interviewing a family. The guidelines categorize family informa- tion according to structure and function. Fried- man’s Family Assessment Form exists in both a long form and a short form. The long form is quite extensive (13 pages), and it may not be possible to collect all of the data in one visit. Moreover, all the categories of information listed in the guidelines may not be pertinent for every family. Like other approaches, this model has its strengths and weak- nesses. One problem with this approach is that it can generate large quantities of data with no clear direction as to how to use all of the information in diagnosis, planning, and intervention. The strength of this approach is that it addresses a comprehen- sive list of areas to assess the family, and that a short assessment form has been developed to highlight critical areas of family functioning. The short form, which is included in Appendix B, outlines the types of questions the nurse can ask.

Calgary Family Assessment Model The CFAM by Wright and Leahey (2013) blends nursing and family therapy concepts that are grounded in systems theory, cybernetics, commu- nication theory, change theory, and a biology of recognition. The following concepts from general systems theory and family systems theory make up the theoretical framework for this model (Wright & Leahy, 2013, pp. 21–44):

■ A family system is part of a larger suprasys- tem and is also composed of many subsys- tems.

■ The family as a whole is greater than the sum of its parts.

■ A change in one family member affects all family members.

■ The family is able to create a balance be- tween change and stability.

■ Family members’ behaviors are best under- stood from a perspective of circular rather than linear causality.

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BOX 4-3 Underlying Assumptions of Friedman’s Family Assessment Model

■ A family is a social system with functional require- ments.

■ A family is a small group possessing certain generic features common to all small groups.

■ The family as a social system accomplishes functions that serve the individual and society.

■ Individuals act in accordance with a set of internalized norms and values that are learned primarily through socialization.

Source: Friedman, M. M., Bowden, V. R., & Jones, E. G. (2003). Family nursing: Research, theory & practice (5th ed.). Upper Saddle River, NJ: Prentice Hall/Pearson Education.

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Cybernetics is the science of communication and control theory; therefore, it differs from sys- tems theory. Systems theory helps change the focus of one’s conceptual lens from parts to wholes. By contrast, cybernetics changes the focus from sub- stance to form. Wright and Leahey (2013) pull two useful concepts from cybernetics theory:

■ Families possess self-regulating ability. ■ Feedback processes can simultaneously occur

at several system levels with families.

Communication theory in this model is based on the work of Watzlawick and colleagues (Watzlawick, Weakland, & Fisch, 1967, 1974). Communication represents the way that individuals interact with one another. Concepts derived from communica- tion theory used in the CFAM are as follows (Wright & Leahey, 2013):

■ All nonverbal communication is meaningful. ■ All communication has two major channels

for transmission: digital (verbal) and analogi- cal (nonverbal).

■ A dyadic relationship has varying degrees of symmetry (similarity) and complementarity (divergence, contrast, or complementary characteristics).

■ All communication has two levels: content and relationship.

Helping families to change is at the very core of family nursing interventions. Families need a bal- ance between change and stability. Change is re- quired to make things better, and stability is required to maintain some semblance of order. A number of concepts from change theory are important to this family nursing approach (Wright & Leahey, 2013):

■ Change is dependent on the perception of the problem.

■ Change is determined by structure. ■ Change is dependent on context. ■ Change is dependent on co-evolving goals

for treatment. ■ Understanding alone does not lead to change. ■ Change does not necessarily occur equally in

all family members. ■ Facilitating change is the nurse’s responsibility. ■ Change occurs by means of a “fit” or meshing

between the therapeutic offerings (interven- tions of the nurse) and the bio-psycho- social-spiritual structures of family members.

■ Change can be the result of a myriad of causes.

Figure 4-3 shows the branching diagram of the CFAM (Wright & Leahey, 2013, p. 48). The as- sessment questions that accompany the model are organized into three major categories: (1) struc- tural, (2) developmental, and (3) functional. Nurses examine a family’s structural components to answer these questions: Who is in the family? What is the connection between family members? What is the family’s context? Structure includes family compo- sition, sex, sexual orientation, rank order, subsys- tems, and the boundaries of the family system. Aside from interview and observation, strategies recommended to assess structure include the genogram and the ecomap.

The second major assessment category in the Calgary approach is family development, which in- cludes assessment of family stages, tasks, and at- tachments. For example, nurses may ask, “Where is the family in the family life cycle?” Understand- ing the stage of the family enables nurses to assess and intervene in a more purposeful, specific, and meaningful way. There are no actual instruments for assessing development, but nurses can use de- velopmental tasks as guidelines.

The third area for assessment in the CFAM is family functioning. Family functioning reflects how individuals actually behave in relation to one an- other, or the “here-and-now aspect of a family’s life” (Wright & Leahey, 2013, p. 116). Aspects of family functioning include activities of daily life, such as eating, sleeping, meal preparation, and health care, as well as emotional communication, verbal and nonverbal communication, communica- tion patterns (the way communication and re- sponses are passed back and forth between members), problem solving, roles, influence and power, beliefs, and alliances and coalitions. Wright and Leahey indicate that nurses may assess in all three areas for a macroview of the family, or they can use any part of the approach for a microassess- ment. Wright and Leahey (2013) developed a com- panion model to the CFAM, the CFIM. This intervention model provides concrete strategies by which nurses can promote, improve, and sustain effective family functioning in the cognitive, affec- tive, and behavioral domains. The strength of the Calgary Assessment and Intervention Model is that it is a conceptually sound model that incorporates

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multiple theoretical aspects into working with fam- ilies. The strength of this approach is also its weak- ness in that unless you are intimately knowledgeable with the model and the interventions, it is difficult to implement in acute care settings.

Family Assessment Instruments Because there are approximately 1,000 family- focused instruments that have been developed and used in assessing family-related variables (Touliatos, Perlmutter, & Straus, 2001), the selection of the ap- propriate instrument can be complex. Sometimes, a simple questionnaire or instrument can be com- pleted in just a few minutes. One such example is the Patient/Parent Information and Involvement Assessment Tool (PINT), which is an instrument

that Sobo (2004) designed to assess the family’s per- spective on shared decision making. Other times, more comprehensive family assessment instruments are necessary, such as the Family Systems Stressor- Strength Inventory (FS3I) (Berkey-Mischke & Hanson, 1991; Hanson, 2001; Kaakinen, Hanson, & Denham, 2010). The FS3I is an instrument designed by nurses to provide quantitative and qual- itative data pertinent to family stressors, family strengths, and intervention strategies (see Appendix A). To select the most appropriate assessment in- strument, be sure the instrument has the following characteristics:

■ Written in uncomplicated language at a fifth- grade level

■ Only 10 to 15 minutes in length ■ Relatively easy to score

Family Nursing Assessment and Intervention 115

Family composition Gender Sexual orientation Rank order Subsystems Boundaries Extended family Larger systems Ethnicity Race Social class Religion and/or spirituality Environment

Activities of daily living Emotional communication Verbal communication Nonverbal communication Circular communication Problem-solving Roles Influence and power Beliefs Alliances/coalitions

Structural

Developmental

Stages

Tasks

Attachments

Instrumental

Expressive

Functional

Family assessment

Internal

External

Context

FIGURE 4-3 Calgary assessment model diagram. (From Wright L. M., & Leahey, M. [2009]. Nurses and families: A guide to family assessment and intervention [5th ed.]. Philadelphia, PA: F. A. Davis, with permission.)

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■ Offers valid data on which to base decisions ■ Sensitive to sex, race, social class, and ethnic

background Regardless of which assessment/measurement in-

strument is used, families should always be informed of how the information gathered through the instru- ments will be used by the health care providers.

Two other family data-gathering instruments that should be used in working with families are the family genogram and the family ecomap. Both are short, easy instruments and processes that supply essential family data and engage the family in ther- apeutic conversation.

Family Genogram and Family Ecomap Genograms and ecomaps provide care providers with visual diagrams of the current family story and situation (Harrison & Neufeld, 2009; Kaakinen, 2010). The information gathered from both the genogram and ecomap help guide the family plan of action and the selection of intervention strate- gies (Ray & Street, 2005). One of the major bene- fits of working with families with these two instruments is that family members can feel and vi- sualize the amount of energy they are expending to manage the situation, which in itself is therapeutic for the family (Harrison & Neufeld, 2009; Holts- lander, 2005; Rempel, Neufeld, & Kushner, 2007).

The use of genograms and ecomaps among nurses and other disciplines is growing and these useful tools are being applied in a number of practice and re- search contexts. Genograms, used historically in the context of genetic prediction and counseling, have been applied alongside ecomaps as primary assess- ment and decision-making tools in acute centers (Leahey & Svavarsdottir, 2009; Svavarsdottir, 2008). Examples of how other providers have applied the use of these tools include enhancing health promo- tion (Cascado-Kehoe & Kehoe, 2008); increasing provider cultural competence and spiritual assess- ment of families (Hodge & Limb, 2010); and assess- ment of child social support systems (Baumgartner, Burnett, DiCarlo, & Buchanan, 2012). It is clear that generating and annotating visual data in these dia- grammatic forms will be increasingly useful to nurses caring for families in many settings and contexts. Family Genogram The family genogram is a format for drawing a fam- ily tree that records information about family members and their relationships over at least three generations (McGoldrick, Gerson, & Petry, 2008).

This diagram offers a rich source of information for planning intervention strategies because it dis- plays the family visually and graphically in a way that provides a quick overview of family complexi- ties. Family genograms help both nurses and fam- ilies to see and think systematically about families and the impact of the health event on family struc- ture, function, and processes.

The three-generational family genogram had its origin in Family Systems Theory (Bowen, 1985; Bowen & Kerr, 1988). According to family systems, people are organized into family systems by gener- ation, age, sex, or other similar features. How a person fits into his or her family structure influ- ences its functioning, relational patterns, and what type of family he or she will carry forward into the next generation. Bowen incorporated Toman’s (1976) ideas about the importance of sex and birth order in shaping sibling relationships and charac- teristics. Furthermore, families repeat themselves over generations in a phenomenon called the trans- mission of family patterns (Bowen, 1985). What hap- pens in one generation repeats itself in the next generation; thus, many of the same strengths and problems get played out from generation to gen- eration. These include psychosocial and physical and mental health issues.

Nurses establish therapeutic relationships with families through the process of asking questions while collecting family data. Families become more engaged in their current situation during this inter- action as their family story unfolds. Both the nurse and the family can see the “big picture” historically on the vertical axis of the genogram and horizontally across the family (McGoldrick et al., 2008). This ap- proach can help families see connectedness, and help identify potential and missing support people.

The diagramming of family genograms must ad- here to specific rules and symbols to ensure that all parties involved have the same understanding and interpretations. It is important not to confuse family genograms with a family genetic pedigree. A family pedigree is specific to genetic assessments (see Chapter 7), whereas a genogram has broader uses for family health care practitioners. Olsen, Dudley- Brown, and McMullen (2004) have suggested, how- ever, that given the advancement of genomics in driving health care, nursing should consider blend- ing pedigrees with genograms and ecomaps as a way to offer a more comprehensive holistic nursing care perspective. Creative blended models built upon

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these ideas are emerging in practice with innovative applications such as the use of color coding for en- hancing multimodal understanding of children and families (Driessnack, 2009).

Figure 4-4 provides a basic genogram from which a nurse can start diagramming family mem- bers over the first, second, and third generations (McGoldrick, Gerson, & Schellenberger, 1999). Figure 4-5 depicts the genogram symbols used to describe basic family membership and structure, family interaction patterns, and other family infor- mation of particular importance, such as health sta- tus, substance abuse, obesity, smoking, and mental health comorbidities (McGoldrick et al., 2008). The health history of all family members (e.g., morbid- ity, mortality, and onset of illness) is important in- formation for family nurses and can be the focus of analysis of the family genogram. An example of a family genogram developed from one interview is contained in the Bono family case study below.

The structure of the interview for gathering the genogram information is based on the reasons why the nurse is working with the family. For example, if the context of creating a genogram is that of ob- taining a health history aimed at uncovering family patterns of illness, the nurse may wish to explore more fully the health history of each generational family member. If, on the other hand, the context of the nursing care is determining the nature of so- cial relationships and roles among family members to craft an acute care plan of discharge, the nurse may wish to focus the interview more closely on determining who is directly in the home and how

their relationships function to aid in the recovery of the ill family member. A suggested format for conducting a concise, focused family genogram in- terview is outlined in Box 4-4. Most families are co- operative and interested in completing their genogram, which becomes a part of their ongoing health care record. The genogram does not have to be completed at one sitting. As the same or a dif- ferent nurse continues to work with a family, data can be added to the genogram over time in a con- tinuing process. Families should be given a copy of their own genogram. Family Ecomap A family ecomap provides information about systems outside of the immediate nuclear family that are sources of social support or that are stressors to the family (Olsen et al., 2004). The ecomap is a visual representation of the family unit in relation to the larger community in which it is embedded (Kaaki- nen, 2010). It is a visual representation of the rela- tionship between an individual family and the world around it (McGoldrick et al., 2008). The ecomap is thus an overview of the family in its cur- rent context, picturing the important connections among the nuclear family, the extended family, and the community around it.

The blank ecomap form consists of a large circle with smaller circles around it (Fig. 4-6). A simpli- fied version of the family is placed in the center of the larger circle to complete the ecomap. This cir- cle marks the boundary between the family and its extended external environment. The smaller outer circles represent significant people, agencies, or

Family Nursing Assessment and Intervention 117

FIGURE 4-4 Basic genogram format.

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Sexual abuse

Female

Heterosexual

Gay Lesbian

Male Therapy or Institutional Connection

Household shown by circling members living together (couple living with their dog after launching children)

Age

above symbol

m 1970 LT 95

*When multiple deceased generators are included, use an X only for untimely death.

inside symbol

Adopted at 5

use an arrow to show family into which child moved

Birth Date

Marriage Secret Affair

Man to woman

Woman to man

82

23

60

62 63

27

Ed Judy

DogSam

Jolie

Transgender People

Pet

Sexual Relationship Living Together

LT 95

Committed Relationship

m 70, s 95

Marital Separation Marital Reconciliation

After Separation

Adopted Child/Foster Child

Bisexual

94 A 99

10

lesbian couple’s daughter conceived

with egg of one partner and sperm donor

gay couple’s daughter conceived

with sperm of one partner and egg donor, carried by

surrogate mother

Donor Insemination

95 A 97LW 98–99

10

41

Immigration

94 1113

92

Location & Annual Income

X and age at death in

symbol, death date above*

above birth date

identified patient (IP) symbol has double line

and is written lower than siblings

spouses written smaller & lower

Death

72

Boston $100,000

1941–2001

Has Lived in 2+ Cultures

Family Secret

24

m 70, s 95, d 97

Divorce

s 95–96

Reconciliation After Divorce

d 98, remar 00

Divorce and Remarriage

d 98, remar 00m 95

Biological child

Focused on HostileClose Fused

Close-hostile

Focused on negatively

Distant Cutoff

Cutoff repaired

Caretaker

Spiritual connection or affinity

Positive relationship

Physical abuse Emotional abuse

Physical or psychological illness

Physical or psychological illness in remission In recovery from substance abuse In recovery from mental or physical problems and from substance abuse Language difficulty (person does not speak dominant language of the country)

Substance abuse

Suspected substance abuse

Physical or psychological illness

Smoker S

Obesity O

97 99 03 04 05

Stillbirth Information unknown

Miscarriage

01

AbortionFoster child

Adopted child

Twins Identical twins

Pregnancy

m 80, s 85–86 d 90, remar 93, rediv 94

Children

Interactional Patterns Between People Addiction, Physical or Mental Illness or Other Problem

list in birth order beginning with the oldest on left

FIGURE 4-5 Genogram symbols. (From Genograms: Assessment and Intervention, Second Edition by Monica McGoldrick, Randy Gerson, and Sylria Shellenberger. Copyright © 1999 by Monica McGoldrick and Sylvia Shellenberger. Copyright © 1985 by Monica McGoldrick and Randy Gerson. Used by permission of W. W. Norton & Company, Inc.)

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institutions with which the family interacts. Lines are drawn between the circles and the family mem- bers to depict the nature and quality of the rela- tionships, and to show what kinds of energy and resources are moving in and out of the immediate family. Straight lines show strong or close relation- ships; the more pronounced the line or greater the number of lines, the stronger the relationship is. Straight lines with slashes denote stressful relation- ships, and broken lines show tenuous or distant re- lationships. Arrows reveal the direction of the flow of energy and resources between individuals, and between the family and the environment. Ecomaps not only portray the present situation but also can be used to set goals, for example, to increase con- nections and exchanges with individuals and agen- cies in the community. See the Bono family case study later in this chapter for an example of a com- pleted ecomap.

The value of using a genogram and ecomap in family nursing practice is expansive. By creating a visual picture of the system in which the family

Family Nursing Assessment and Intervention 119

FIGURE 4-6 Blank ecomap.

BOX 4-4 Family Genogram Interview Data Collection

1. Identify who is in the immediate family. 2. Identify the person who has the health problem. 3. Identify all the people who live with the immediate

family. 4. Determine how all the people are related. 5. Gather the following information on each family

member. ■ Age ■ Sex ■ Correct spelling of name ■ Health problems ■ Occupation ■ Dates of relationships: marriage, separation, divorce,

living together, living together/committed ■ Dates and age of death

6. Seek the same information for all family members across each generation for consistency and to reveal patterns of health and illness.

7. Add any information relative to the situation, such as geographical location and interaction patterns.

Place basic genogram of the immediate family in the center of the ecomap circle

Child’s school

Subsystem

Family interacts

Extended family or

family

Church

Work

Strong relationship

Weak relationship

Tense relationship

Direction of energy flow

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exists, families are more able to envision alternative solutions and possible social support networks (Ray & Street, 2005; Yanicki, 2005). In addition, the process of this data collection itself helps to expose a clearer picture of the supportive or unsupportive family relationships that are going on in a family system (Neufeld, Harrison, Hughes, & Stewart, 2007). This information will enhance understand- ing of the family’s social network with their care- givers (Ray & Street, 2005).

Family Health Literacy Health literacy is the ability to use health infor- mation to make informed decisions through the comprehension of reading material, documents, and numbers. Functional health literacy incorpo- rates all of these elements, but it also implies that the client (family) has the ability to act on health care decisions. Concepts of health literacy include the comprehension of medical words, the ability to follow medical instructions, and the under- standing of the consequences when instructions are not followed (Speros, 2005). Nurses who understand the concept of health literacy will ac- tively seek to collect ongoing assessment data about the learning needs of family members in their meetings, interviews, or conferences. This data about the family members’ abilities and pref- erences for learning will help guide the nurse to provide education, materials, and other supports, such as videos or Web sites, that are accessible to the family.

Through interactions with the family and when completing the genogram and ecomap, nurses have the opportunity to determine whether there is an issue of health literacy for any member of the fam- ily. Health literacy is an important measure for health care practitioners because lower health lit- eracy is strongly associated with poor health out- comes (Berkman, Sheridan, Donahue, Halpern, & Crotty, 2011; Sentell & Halpin, 2006; Speros, 2005). Health literacy plays a primary role in peo- ple’s ability to gain knowledge, make decisions, and take actions that result in positive health outcomes (Berkman et al., 2011; DeWalt, Boone, & Pignone, 2007; Speros, 2005), especially when managing a chronic illness (Gazmararian, Williams, Peel, & Baker, 2003). Assessment is particularly important when low literacy or low language proficiency ex- ists, because such individuals are more likely to at- tempt to hide their inability to read or understand

because of shame or embarrassment (Bass, 2005; Dreger & Tremback, 2002; Osborn et al., 2007).

When nurses design written material for the family, the following common elements make it easier to understand from a health literacy per- spective (Bass, 2005; Peters, Dieckmann, Dixon, Hibbard, & Mertz, 2007):

■ All written information should be in at least 14-point font using high-contrast Arial or sans serif print with plenty of blank space on glossy paper.

■ Uppercase and lowercase letters should be used.

■ Information is most easily seen when using black ink on white paper. Use short sen- tences with bullets or lists no longer than seven items (Peters et al., 2007).

Written information presented at the third- grade reading level will reach the largest audience, but it may be necessary to write at the fifth-grade level to retain the meaning of the content (Mayer & Rushton, 2002; Peters et al., 2007). Using mul- tiple forms of communication, including visual aids, will help families retain the information (Bass, 2005; Dreger & Tremback, 2002; Osborn et al., 2007).

Nurses need to approach assessment of the fam- ily health literacy with sensitivity and understand- ing. It is a crucial element to take into consideration during the analysis of the family story and in the de- velopment of the family action plan.

ANALYSIS OF THE FAMILY STORY

One of the challenges of data collection is organ- izing the individual pieces of information so that the “big picture” or whole family story can be un- derstood and analyzed. To understand the family picture, the nurse must consolidate the data that were collected into meaningful patterns or cate- gories so as to visualize the relationships between and among the patterns of how the family is man- aging the situation. Diagramming the family and the relationships between the data groups assists identifying the most pressing issues or problems for the family. If the family and nurse focus on solving these major family problems, the outcome will have a ripple effect by positively influencing the other areas of family functioning.

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The Family Reasoning Web (Fig. 4-7) is an organizational tool to help analyze the family story, by clustering individual pieces of data into meaningful family categories. The components of the Family Reasoning Web have been pulled from various theoretical concepts, such as Family Structure and Function Theory, Family Develop- mental Theory, Family Stress Theory, and family health promotion models. This systematic ap- proach to collecting and analyzing information helps structure the information collection process to ensure inclusion of important pieces of infor- mation. The categories of the Family Reasoning Web are as follows:

1. Family routines of daily living (i.e., sleep- ing, meals, child care, exercise)

2. Family communication 3. Family supports and resources 4. Family roles 5. Family beliefs 6. Family developmental stage 7. Family health knowledge 8. Family environment 9. Family stress management

10. Family culture 11. Family spirituality

Once the data have been placed into the cate- gories of the Family Reasoning Web template, the nurse assigns a family nursing diagnosis to each cat- egory. “A nursing diagnosis is defined as a clinical judgment about individuals, families, or community responses to actual or potential health problems/life processes. Nursing diagnoses link information to care planning. Nursing diagnoses provide the basis for selecting nursing interventions to help achieve outcomes for which nurses are accountable” (Doenges et al., 2013, p. 11). The case study below presents more information on nursing diagnoses.

The North American Nurses Diagnosis Associ- ation (NANDA) (2007) is the most global nursing classification system. NANDA nursing diagnoses that are specific to families are listed in Box 4-5. If the pattern of family data in the specific category in the Family Reasoning Web does not match one of the NANDA nursing diagnoses, nurses are en- couraged to create a family nursing diagnosis that captures the family problem. Nursing diagnosis manuals are extremely important resources for nurses because family nursing diagnoses are read- ily linked with both the Nursing Intervention Classification (NIC) (Bulechek, Butcher, Dochter- man, & Wagner, 2013) and Nursing Outcomes Classification (NOC) (Moorhead, Johnson, Maas,

Family Nursing Assessment and Intervention 121

FIGURE 4-7 Family Reasoning Web template.

Family environment

Family health knowledge

Family developmental

stage

Family diagnosis

Family communication

Family social supports and

resources Family roles

Family beliefs

Family culture

Family stress management

Family routines of daily living,

(e.g., meals, sleep, exercise, child)

Family spirituality,

religion

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& Swanson, 2012) data sets. These resources pro- vide many new ideas for family interventions and suggest focused family outcomes that can be ex- plored with families.

Other diagnostic classification systems that can be used to identify problems include the Omaha System–Community Health Classification System (Martin, 2004), the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5; American Psychiatric Association, 2013), and the International Classification of Diseases: Clinical Modifications, Ninth Edition (ICD-9-CM; American Medical Associa- tion, 2012). See Tables 4-3 and 4-4, respectively, for examples of selected family diagnoses from the DSM and ICD-9-CM sources.

A rapidly growing system of diagnostic language relevant to nursing in North America is that of the World Health Organization ICD companions, the International Classification of Functioning (ICF) and its related child and youth version (ICF-CY) (World Health Organization, 2013). This broad schema of classification focuses on making diagnostic statements of health impact in four domains: body structure, body function, activ- ity and participation, and environment (World Health Organization, 2013). Family nursing practice

greatly involves the focus on the domains of activity and participation and the environmental context of family life. Given that nurses’ primary focus with individuals and families is the functional aspect of health in daily life, this system of categorizing and coding functional outcomes of health is com- pelling. The ICF and ICF-CY approaches are being used with expanded focus in Europe and Canada particularly (Florin, Björvell, Ehnfors, & Ehrenberg, 2012; Raggi, Leonardi, Cabello, & Bickenbach, 2010).

After the categories have been assigned and a family nursing diagnosis determined, the next step in analyzing the family story is for the nurse and family to work together to determine the relation- ships between the categories. Arrows are drawn

122 Foundations in Family Health Care Nursing

BOX 4-5 NANDA Nursing Diagnoses Relevant to Family Nursing

■ Risk for impaired parent/infant/child attachment ■ Caregiver role strain ■ Risk for caregiver role strain ■ Parental role conflict ■ Compromised family coping ■ Disabled family coping ■ Readiness for enhanced family coping ■ Dysfunctional family processes: alcoholism ■ Readiness for enhanced family processes ■ Interrupted family processes ■ Readiness for enhanced parenting ■ Impaired parenting ■ Risk for impaired parenting ■ Relocation stress syndrome ■ Ineffective role performance ■ Ineffective family therapeutic regimen management

Source: Doenges, M. E., Moorhouse, M. F., & Murr, A. C. (2013). Nursing diagnosis manual: Planning, individualizing, and doc- umenting client care (3rd ed.). Philadelphia, PA: F. A. Davis, with permission.

Table 4-3 Selected Family-Centered Diagnoses From Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition

V61.9 Relational problem related to a mental disorder or general medical condition

V61.20 Parent-child relational problem

V61.10 Partner relational problem

V61.8 Sibling relational problem

V71.02 Child or adolescent antisocial behavior

V62.82 Bereavement

V62.3 Academic problem

V62.4 Acculturation problem

V62.89 Phase-of-life problem

Source: American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (DSM-5) (5th ed.). Washington, DC: Author.

Table 4-4 Selected Family-Centered Diagnoses From ICD-9-CM

313.3 Relationship problems

313.8 Emotional disturbances of childhood or adolescence

V61.0 Family disruption

V25.09 Family planning advice

V61.9 Family problem

94.41 Group therapy

94.42 Family therapy

Source: American Medical Association. (2013). International classification of diseases: Clinical modifications (IDC-9-CM). Dover, DE: Author.

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between the family categories showing the direc- tion of influence if the data in one category influ- ence the data in another category. The important family problems or issues surface by systematically working through all of the relationships because they are the ones that have the most arrows indi- cating the strongest relationships to all other areas of family functioning. The step reveals the primary family problems.

Another dimension of the family story that is of importance to nurses is the dimension of beliefs. Family and family member beliefs about health, ill- ness, health care providers, and even their own roles and processes are of great importance for nurses to assess in planning to provide optimal care. The Beliefs and Illness Model by Wright and Bell (2009) suggests that nurses should assess families’ beliefs in a number of areas, specifically, family structure, roles, communication, and decision- making authority; beliefs about health and illness (how they are defined, why they occur, how they are managed); and beliefs about health care providers (their intentions, motivations, and knowledge and the meaning of their presence and actions to the families and their health or illness ex- perience). Individuals and families often behave based upon their beliefs and thus any attempt for nurses to engage families in health promotion, health literacy, or health intervention in any setting requires an exploration of these key areas. After verifying all of these findings with the family, the next step is to work with the family to understand their preferences for decision making and design a family plan of care accordingly.

Shared Decision Making Family nurses should explore how involved the family would like to be in the decision-making processes. Universal needs of families include con- sistency, clarity, comprehensive information, and involvement in shared decision making with the health care provider (Salmond, 2008; Schattner, Bronstein, & Jellin, 2006; Whitmer, Hughes, Hurst, & Young, 2005). Nurses, consciously and otherwise, affect the family stress level by control- ling how much (and how quickly) they involve the family in the care of their family members (Corlett & Twycross, 2006). Nurses control how much in- formation they share with families, how much they involve the family in the daily routine, visiting

hours, and even discussions with/among family members. Families have expressed fears of alienat- ing health care providers (Taylor, 2006), thus com- promising their loved ones’ care. All of this may interfere with nurses being able to be effective fam- ily advocates (Leske, 2002).

Health care providers underestimate the extent that families want to be involved in the care of and decision making about loved ones (Bruera, Sweeny, Calder, Palmer, & Benisch-Tolly, 2001; Pierce & Hicks, 2001). Although most families prefer a shared decision-making approach (de Haes, 2006; Schat- tner et al., 2006; Whitmer et al., 2005), families vary relative to the amount of information they want and their role in the decision-making process (Sobo, 2004). The amount of information families seek or need changes over the course of the health event, the stage of the illness, and the likelihood of a cure (Butow, Maclean, Dunn, Tattersall, & Boyer, 1997).

An option grid is one strategy for implementation of shared decision making (Elwyn et al., 2012). An option grid is developed by the family nurse keeping health literacy principles at the fifth-grade level. Elwyn et al. specifically developed the grid format as a decision-making paper worksheet addressing com- mon therapeutic approaches to specific health con- ditions where patients and families could view the benefits or drawbacks associated with different pos- sible treatment decisions. On the worksheet, the most relevant, frequently asked questions about a specific condition make up the rows of the grid, and the specific options available for the decision make up the columns. Patients are given the paper grid and talked through the options available to them with their provider. For example, see Box 4-6, an option grid that a nurse could design to help parents deter- mine respite placement for their 12-year-old daugh- ter who is medically fragile with severe cerebral palsy. This specific tool shows promise for nurses working with families because not only does it represent the principles of family-centered care in practice, but also because families often have difficulties understanding their options and the potential benefits or conse- quences associated with their choices.

Another approach to shared decision making is to use the Patient/Parent Involvement Informa- tion Assessment Tool (PINT) developed by Sobo (2004). The PINT is a self-administered survey that can be kept in the medical record to facilitate and target information for communication be- tween the health care team and the family. In the

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challenge to collaborate in the care and meet the needs of individuals and family members, nurses may ask the following two sample questions from the PINT tool (Sobo, 2004, p. 258):

1. When possible, what level of information would you prefer to receive? ■ The simplest information possible ■ More than the simplest, but want to keep

it on everyday terms ■ In-depth information that you can help me

understand ■ As much in-depth and detailed informa-

tion as can be provided

2. When possible, what decision-making role do you want to assume? ■ Leave all decisions to the health care team ■ Have the care team make the decisions

about care with serious consideration of our views

■ Share in the making of the decisions with the health care team

■ Make all the decisions about care with se- rious consideration of the health care team advice

Supporting the hypothesis that not all families and family members want full involvement in making

health care decisions, Makoul and Clayman (2006) have outlined the following nine options for shared decision making (p. 307):

■ Doctor alone ■ Doctor led and patient acknowledgment

sought or offered ■ Doctor led and patient agreement sought or

offered ■ Doctor led and patient views/option sought

or offered ■ Shared equally ■ Patient led and doctor views/opinions sought

or offered ■ Patient led and doctor agreement sought or

offered ■ Patient led and doctor acknowledgment

sought or offered ■ Patient alone

One of the problems with the implementation of shared decision making is that every health care provider has a different definition and un- derstanding of the components of this concept, as well as personal biases and beliefs about how individuals and families may or may not wish to participate (Elwyn et al., 2012; Makoul & Clayman, 2006). Shared decision making is not

124 Foundations in Family Health Care Nursing

BOX 4-6 Example of Option Grid

The following is an example of an option grid for helping a family to decide about 1-week respite placement for their 12-year-old medically fragile child:

Option 1: Home

Child knows own home and is around familiar surroundings.

Home is adapted to the child’s needs and wheelchair.

Caregiver would be the skills trainer who knows the child.

Parents are comfortable with the child being with the skills worker during the day, but do not have experience with this person at night.

Cost: $250 a day for 7 days for a total of $1,750. This would come out of the parents’ pocket because insurance does not cover this care.

Option 2: Grandmother’s home

Child has been to grandmother’s home only a couple of times because it is in a different city.

Home is not adapted to the physical care needs of child, such as wheelchair and bathing.

Caregiver is grandmother, who the child knows well and has spent consid- erable time with.

Parents are comfortable with the child being with grandmother. Grandmother has helped take care of child for short times before, such as a weekend.

Cost: nothing.

Option 3: Nursing home

New setting for child.

Setting can accommodate the child’s special needs and wheelchair.

No personal relationship with care- givers in this setting. Grandmother could visit during day.

Parents do not have a relationship with the caregivers in this setting.

Cost: Covered by insurance.

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just informing the family of the decisions and keeping the lines of communication open, nor is it the health care providers determining what de- cisions the family can make. Shared decision making requires that health care providers tailor their communication, accommodate their talk to the level of the family, and present information in a way that allows the family to make informed choices. Shared decision making includes the fol- lowing steps as outlined by Makoul and Clayman (2006, pp. 305–306):

■ The family and health care provider must de- fine and agree on the health problem that is confronting the family member.

■ The health care provider presents and dis- cusses options of care in a way that invites family questions.

■ The family and health care provider discuss pros and cons of options, including cost ben- efits, convenience, and financial costs.

■ The family and health care provider discuss values and preferences, including ideas, con- cerns, and outcome expectations.

■ The family and health care provider discuss ability and confidence to follow through with steps or regimen for each option.

■ Both the health care provider and family should check and clarify for understanding the discussion and information shared.

■ Both the health care provider and family should reach a decision or defer decisions until an agreed-on, specified time.

■ The health care provider should follow up to track the outcome of the decision.

FAMILY NURSING INTERVENTION

The family plan of action (or care) is designed by the nurse and the family to focus on the concerns that were identified in the Family Reasoning Web as the most pressing or causing the family the most stress. The plan should account for the fam- ily preferences for decision making and should meet their health literacy needs. The more spe- cific the family plan of action and the interven- tions, the more positive the outcomes. The role of the nurse is to offer guidance to the family, pro- vide information, and assist in the planning inter- ventions. Working with families from an outcome perspective helps to clarify what information and resources are necessary to address the family need.

The following four points will help the family break the plan into action steps:

1. We need the following type of help. 2. We need the following information. 3. We need the following supplies or resources. 4. We need to involve or tell the following

people about our family action plan.

For the purposes of clarity and evaluation, this plan should be a written document. The action steps or interventions should be clear and concise. The plan should outline specifically who needs to do what by when and also articulate the timeframe in which the nurse will follow up. The last step of any family action plan should entail evaluation that involves the nurse and family reflecting and sharing ideas about what worked well, what needs to con- tinue to be addressed by the family, and avenues for seeking help in the future.

Working with families to improve health and adapt to illness is the primary goal of family health care nursing. Nevertheless, there has been little direct evidence of the potential outcomes and effects asso- ciated with family nursing intervention because nurses are not often leading such research and/or tend to focus more on descriptive rather than interven- tional research (Chesla, 2010). What has been dis- tilled from the bodies of literature on family health care intervention, however, is that family intervention does seem to produce better effects than usual, indi- vidual-focused medical care; greater effects have been shown in improving child health than adult health in some chronic conditions; and family-focused inter- vention examples found in childhood obesity efforts reveal the most compelling effects (Chesla, 2010).

Chesla (2010) also articulated that the means of interventions varied and ranged from simple home visits to coach families to much more complex edu- cational and skill-developing strategies. Nurses were involved in relationship-based interventions to improve family communication, problem solving, and skill building as they related to illness or health management. The more tools nurses tended to use to assist families (multimodal) as part of their care plans, the better the outcomes seemed to be, par- ticularly in managing complex health conditions that required numerous lifestyle changes. Family members were sometimes noted to be beneficiaries of interventions, experiencing unique and improved outcomes that were separate from the health of the patient (Chesla, 2010). The field requires additional intervention strategies and resulting evidence of

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outcomes, though more frequent examples are be- ginning to emerge in practice (Svavarsdottir & Jonsdottir, 2011).

Nurses help families in the following ways: (1) providing direct care, (2) removing barriers to needed services, and (3) improving the capacity of the family to act on its own behalf and assume re- sponsibility. Family nursing interventions can be di- rected toward improving the health outcomes of the member with the illness or condition, the family members’ health-related outcomes of caregiving, or a combination of both. One of the important as- pects of working with the family is the nurse-family relationship, which is an intervention in and of itself as families can experience a sense of strength, com- fort, and confidence that can be therapeutic and useful (Friedman, Bowden, & Jones, 2003).

The nurse is responsible for helping the family implement the plan of care. The nurse can assume the role of teacher, role model, coach, counselor, advocate, coordinator, consultant, and evaluator in helping the family to implement the plan of the care they jointly created. The types of interventions are limitless because they are designed with the family to meet its needs in the context of its family story. Three examples below illustrate different family nursing interventions in various contexts.

Brief Therapeutic Conversations in Acute Care Brief family conversations or interviews can be con- sidered a family intervention. These brief interviews could include nurses making introductions to family members, collecting focused data to complete simple

genograms and ecomaps, and opening pathways of knowing about families’ self-defined needs and pri- orities (Wright & Leahey, 2013). Svavarsdottir, Tryggvadottir, and Sigurdardottir (2012) conducted a study measuring families’ perceptions of nurse sup- port and their own reports of family functioning. The study compared families who received brief family intervention interviews with nurses and those who did not. Predictably, families who received the nursing intervention interview reported feeling more supported than those who did not. Surpris- ingly, this finding was true for families with a child with an acute health crisis but was not true for those coping with chronic conditions. Expressive family functioning did not seem to change in the latter sit- uation. Families of acutely ill children may experi- ence significant benefits, however, when nurses take small amounts of time to enact simple family health care strategies (Svavarsdottir et al., 2012).

Home Visits and Telephone Support Nursing visits to family homes are part of the early historical tradition of nursing and are appropriate to use today in family nursing. Northouse et al. (2007) utilized a clinical trial design to provide three in- home support visits along with two follow-up tele- phone calls to partnered couples where men were living through prostate cancer treatment. In the study, both patients and partners who received the in-home visits and phone calls reported that their communication and relationship with one another improved. Nurses offered these families coaching in communication, facilitated discussions that identified the beliefs and needs of both partners, and helped the families make decisions about care tasks and life bal- ance. The partners seemed to benefit by demonstrat- ing improved quality of life, increased self-efficacy, and less overall caregiving negativity than partners who did not receive the intervention. Additionally, some spouses continued to report these effects for up to 8 months following the intervention, suggesting that the act of providing access to nurses in the home and via telephone helped spouses long after the con- tact ended (Northouse et al., 2007).

Self-Care Talk for Family Caregivers Nurses caring for families can intervene to pro- mote health by helping families to identify poten- tial health risks that stress the health of the family,

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such as when a 45-year-old father and husband with metabolic syndrome refused to comply with diet and exercise interventions. Parker, Teel, Leen- erts, and Macan (2011) proposed a unique family nursing intervention for developing self-care mo- tivation and implementation in family caregivers of people with high-acuity health needs; it is widely known that intensive periods of caregiving can re- sult in worsening health of caregivers. In this inter- vention, family nurses made a series of six extended telephone calls that helped the family caregivers identify the barriers they faced in taking care of themselves and then used a theory-based frame- work to remove those barriers and implement self-care strategies to improve their own health. Clinical trial research is needed to demonstrate the efficacy and effectiveness of this intervention, but early evidence from similar approaches indicates that the ideas have promise for improving caregiver health. Moreover, the relational nature of the in- tervention, supplied entirely by telephone, is cre- ative and has implications for nurses serving families in a variety of settings, including those in rural locations.

FAMILY NURSING EVALUATION

In making clinical judgments, nurses engage in critical thinking to determine whether and to what extent they have met an outcome. The means of measuring desired changes in outcomes varies with the specific problem upon which the action plan is focused. For example, if the family has identified that a primary focus problem is disrupted sleep routines for their young child with attention- deficit/hyperactivity disorder, the nurse may pro- pose that the family create a simple chart to measure their new routine of sleep hygiene prac- tices on a daily basis. The family determines that at present, the child is not able to fall asleep with ease on any given night and they set a goal to have the child falling asleep with ease 3 nights a week initially. Using the simple daily charting concept, the nurse and family can easily look to the col- lected data at a specified time to determine if the goal has been met. The team makes the decision about whether to proceed as originally planned, to modify the family action plan, or to revisit the fam- ily story in total. As indicated previously, the crit- ical reasoning approach of thinking about families

and their needs is not linear. In practice, a constant flow occurs between the components of the family assessment and intervention strategy with plans being continually evaluated and modified through reflection.

There can be many reasons underlying a lack of success in meeting desired outcomes when working with families, some of which may be related to fam- ily factors, others to nurse factors, and even others to additional environmental factors. Apathy and indecision are examples of potential family barriers. Family apathy may occur because of value differ- ences between the nurse and the family. The family may be overcome with a sense of hopelessness, may view the problems or bureaucracy as too over- whelming, or may have a fear of failure. Nurses also should consider whether they themselves imposed barriers. Examples of nurse barriers to achieving desired family outcomes could include discrepant values or beliefs from the family, resulting in a lack of follow-through on the part of the nurse; not lis- tening to family concerns about the problems of importance, leading to two separate, rather than one unified, outcome goal; or even lack of time and resources needed for the nurse to address the fam- ily needs in a timely fashion. Examples of additional environmental factors that act as barriers to desired outcomes can be things such as a change in the pre- scription formulary that limits access to the effec- tive drug of choice on a family’s insurance plan, lack of access to an appropriate specialty care provider because of rural geography, or the loss of a job by the primary wage earner in the family. A more detailed list of possible barriers to family out- comes can be found in Box 4-7.

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BOX 4-7 Barriers to Family Outcomes

■ Family apathy ■ Family indecision about the outcome or actions ■ Nurse-imposed ideas ■ Negative labeling ■ Overlooking family strengths ■ Neglecting cultural or gender implications ■ Family perception of hopelessness ■ Fear of failure ■ Limited access to resources and support ■ Limited finances ■ Fear and distrust of health care system

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Aside from evaluating outcomes, another im- portant part of the family evaluation is the decision when to end the relationship with the family. Sometimes care with a family ends suddenly. In this case, it is important for nurses to determine the forces that brought about the closure. The family may seek to end the relationship prema- turely, which may require a renegotiating process. The insurance or agency requirements may place a financial constraint on the amount of time nurses can work with a family. Other times, the family- nurse relationship comes to an end more naturally, as when the nurse and family together determine that the family has achieved the intended out- comes. Whatever the reason for the end of the nurse-family relationship, it is crucial that closure be achieved between the parties.

Building closure into the family action plan will benefit the family by providing for a smooth transi- tion process. Strategies often used in this transition include decreasing contact with the nurse, extending invitations to the family for follow-up, and making referrals when appropriate. If possible, this process should include a summary evaluation meeting where the nurse and family put formal closure to their relationship. Following up with a therapeutic letter can encourage families to continue positive adapta- tion. The therapeutic letter should include recogni- tion of the family achievement, a summary of the actions, commendations to each family member, and an insightful question for the family to think about in the future that may provide the family a future direction (Wright & Bell, 2009). An example of a therapeutic family letter is found in Box 4-8.

128 Foundations in Family Health Care Nursing

BOX 4-8 Example of Therapeutic Family Letter

Dear W, H, and T, First, I want to thank all of you for allowing me the op-

portunity to get acquainted with your family. I appreciated your openness and willingness to talk with me.

During our time together, we discussed several issues that were important to your family. One of these issues was the ongoing possibility of H losing his job because of the seasonal nature of his work. We explored the effects of potential job loss on a personal and family level.

H, you expressed some concern about your ability to provide adequately for your family. You indicated a per- sonal constraining belief that a lack of steady employment meant that you were letting your family down and not providing for them. We discussed the idea that a paying job is only one part of the entire family support system that you provide. We explored some examples of noneco- nomic means of support, such as specific tasks related to farm chores, household management, and child care. If your job situation changes again, I hope you will find some of these suggestions helpful.

W, I was so impressed with your ability to juggle your caregiving job with home, farm, kids, and spouse. I can’t think of many women who could handle all of that with such strength and grace. With all that you do, it’s not sur- prising that there isn’t much time left over for your own personal endeavors. We discussed your constraining belief that you had to be responsible for everything. You envi- sioned the possibility of letting go of certain tasks and suggesting ways to share other tasks more equitably

among family members. If you and your family choose to implement some task-sharing ideas, I sincerely hope this will work for all of you.

T, you have mapped out a path to higher education and a future career. You have every reason to expect suc- cess. We briefly touched upon what “success” might mean for you and whether success depends on the uni- versity attended. I hope you will consider my thoughts in this regard. Whatever the outcome, you have the love and support of your parents.

Finally, I would like to commend all of you for your deep devotion to each other and for putting family first. You value family time, and you strive to communicate in a way that sustains your close relationship with each other.

I would like to invite W and H to consider a suggestion regarding making time for just the two of you. “Couple time” is easy to overlook when you are focused on creat- ing a loving, stable home for E and helping to launch T into higher education. Please remember that you two are the solid foundation of your family; the stronger your rela- tionship is, the stronger your whole family can be.

As a result of our time spent together, I came away with the feeling that your family is exceptionally strong, deeply committed to one another, and fully capable of adapting to any of life’s challenges. Thank you again for your time.

Best wishes to you and your family, Nursing student signature here

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NURSE AND FAMILY REFLECTION

The final step in critically thinking about family nursing is for nurses and families to engage in vital, creative, and concurrent reflection about their work together. There are two purposes of engaging in individual and collaborative reflection: to facilitate evaluation of progress toward the desired family outcomes and to increase expertise of the nurse.

The first purpose is for the nurse to reflect on the success of the family outcome in collaboration with the family as part of outcome evaluation. Re- flection entails thinking about your thought process relative to this family client. Nurses can link ideas and consequences together in logical se- quences by using an “if (describe a situation) ... then (explain the outcome)” exercise, which can help the

family member articulate concerns. A comparative analysis approach of the family problem can be used to analyze the strengths and weaknesses of competing alternatives. The nurse may decide to reframe the family problem or priority need by at- tributing a different meaning to the content or con- text of the family situation based on testing, judgment, or changes in the context or content of the family story (Pesut & Herman, 1999). While this process of reflecting with the family results in new co-created evaluation and knowledge related to the collaborative work, the nurse can also engage in this comparative reflective reasoning individually in preparation for and follow-up to the discussions with the family.

The second purpose of reflection is for nurses to build on their expertise by reflecting on client stories and their practice with each family. In essence, nurses create a library of family stories so that each time they come upon a similar family story, they can pull ideas from previous experi- ences. This aspect of reflection assists nurses with pattern recognition.

Yet another, more individual purpose of reflection is to engage in self-reflection and self-evaluation. By using this critical thinking strategy, nurses learn from mistakes and cement patterns of action that assist them to advance in their nursing practice from novice to expert family nurse.

A family case study follows that demonstrates crit- ical reasoning about a family, assessment to identify concerns, and interventions to meet family needs.

Family Nursing Assessment and Intervention 129

new member. (See Chapter 3 for details about this theo- retical model.) Based on this approach, Vicki has many questions in her mind as she prepares for her appointment with the Bono family. The questions Vicki has about each family member and the whole family are presented in bul- leted lists after a brief description of each family member.

Libby Bono is a 35-year-old mother recovering from a cesarean section delivery 7 days ago. She does not have any existing health problems. Libby’s roles in the family are primary child-rearer, events planner, disciplinarian, and health expert. Libby is a hairdresser and is independently contracted with a hair salon. She has planned to take off 3 months for maternity leave.

• How might Libby’s recovery from the cesarean section be affecting her roles in the family, especially with an active 2-year-old and a newborn?

(continued)

Family Case Study: Bono Family In preparation for her appointment with the Bono family in the mother-baby clinic, Vicki reviews the chart notes written by the nurse midwife about the family. Vicki sees that the Bono family is coming in for a 1-week well-baby checkup of new- born infant Hannah and a follow-up for Libby, the mother, after her cesarean section (C-section) delivery 7 days ago. The note from the receptionist indicates that Libby expressed some concerns with her effectiveness in breastfeeding Han- nah. The appointment book notes that the whole Bono family is coming for this visit. Vicki notes that the Bonos are a nuclear family that consists of a married couple with two biological children. Figure 4-8 shows the Bono family genogram.

Knowing that this is a nuclear family coming in for a well-baby checkup, Vicki decides to use a Developmental Family Life Cycle theoretical approach to this family with a

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• What are Libby’s thoughts or plans for returning to work after her maternity leave?

• How is Libby adjusting to her expanded mother role? Assess Libby for postpartum depression.

Matt Bono, 36 years old, works for Frito Lay Company in sales and distribution. His primary roles in the family are decision maker, maintenance person, pioneer, and infor- mation provider. He reports feeling little attachment to his occupation and welcomes this new birth as a change in routine and an opportunity to consider a change in his place of employment. His current medical problems in- clude type 2 diabetes and mild hypertension; both are well managed and controlled by oral diabetic and antihyperten- sive medications. Currently, he is following the Weight Watchers diet to reduce his weight and to control the symptomatology experienced from his health conditions.

• How is Matt adjusting to the expanded role of father of two daughters?

• What are Matt’s plans for employment, specifically about financial support for the family if he leaves his job? How would this affect health insurance for the family?

Sabrina Bono is a healthy 2-year-old girl who is devel- opmentally appropriate. Psychologically, Sabrina is in the autonomy versus shame-and-doubt developmental stage. Her parents report that she often attempts to try new things on her own, and they frequently praise her efforts to

promote independence. Her interest in potty training is de- veloping, but still intermittent. Her immunizations are cur- rent. She normally goes to a day-care center that is close to her mother’s work.

• How is Sabrina adjusting to the new baby? • Is Sabrina showing any regression in her skills and abilities? • Are each of the parents finding time to spend with Sab-

rina alone? • How are the parents talking with Sabrina about her role

as big sister?

Hannah Bono, 7 days old, was delivered after 42 weeks’ gestation and was proved to be adequate for gestational age (AGA; 10th–90th percentile), 53.75 cm and 3,966 g, with American Pediatric Gross Assessment Record (APGAR) scores of 8 at 1 minute and 9 at 5 minutes.

• Is Hannah developing on target for her age and gesta- tional age at birth?

• How often is Hannah eating, and is she gaining weight? • How is Hannah nursing?

The Bono family is a nuclear family with the addition of second child.

• What are the major concerns for the family at this time? • Who in the family is having the most difficult adjustment

to the changes brought about by the addition of a new family member?

130 Foundations in Family Health Care Nursing

3 yr

Matt 36 yr

M 2000

Libby 35 yr

Works in sales Diabetes type 2 Hypertension Family health insurance

Healthy Developmentally appropriate Behavior regression with birth of Hannah Day care all week

C-section 7 days ago Hairdresser, on leave 3 months

HealthyHannah 7 days

Sabrina 2 yr

Ava 30 yr

FIGURE 4-8 Bono family genogram.

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• How is the family adjusting to these changes? • Who or what are the support systems for this new

family?

Bono Family Story: During the appointment, Vicki confirms that family life for the Bono family has changed. Hannah was found to be healthy and developmentally appropriate. Libby is healing well from the C-section, but reported occasional discomfort when she “overdoes it.” Libby’s concerns about breastfeed- ing were easily relieved as Vicki validated her breastfeeding technique. An assessment for postpartum depression re- vealed that Libby is not demonstrating any signs of depres- sion at this time. Throughout the examination of Hannah, the parents demonstrated overwhelming signs of bonding, such as talking with the infant and bragging about her beauty and temperament. During the appointment, Vicki noted that Sabrina was throwing toys and attempting to crawl onto her mother’s lap while Libby was nursing Han- nah. Sabrina would say “baby back” when she was upset. When Matt attempted to coddle or praise the baby, Sabrina became extremely angry with her father. They were not ig- noring Sabrina but were not focused on her during the ap- pointment. The parents’ nonverbal actions showed frustration with Sabrina’s behaviors. When asked, they re- ported that Sabrina has been very temperamental and in- consolable at day care. They reported that she had begun to show progress with toilet training before Hannah’s birth but had now lost all interest.

Analysis of Bono Family Story: To help everyone see the larger family picture, Vicki uses the Family Reasoning Web (see Fig. 4-7). Based on the re- sponses from using the Family Reasoning Web, she uncov- ered the following family information for analysis:

• Family routines of daily living: Matt and Libby are both tired from Hannah’s every-3-hour breastfeeding sched- ule. They share some of the responsibility for comforting Hannah and seeing to her needs. Meals have been chal- lenging as Matt has had to assume this responsibility be- cause Libby has not recovered from her C-section. At this time, they do not have extended family support. Sabrina is still going to day care but is evidencing difficulty there.

• Family communication: Communication has been identi- fied as a strength of the couple. They have a shared de- cision-making style. They appear nurturing with their children. Sabrina is emotionally up and down. She is clingy with her dad and ignores her mother except when she is breastfeeding Hannah. Sabrina was throwing toys when upset or frustrated. She periodically pointed to Hannah and said, “Take back.”

• Family supports and resources: This family is fully cov- ered under Matt’s health insurance through his work. They have some family they can call on to help them. Ava, Libby’s sister, volunteered to come for a visit and stay for 2 weeks. Matt’s brother, his wife, and their 3- year-old child live in the same city. They have informally talked about sharing some child care. Both parents need to work to sustain their family lifestyle. Libby does not have benefits in her contracted hairdresser job. When she is off work, she does not make money. She does not have paid maternity leave. The couple planned for Libby to take 3 months off from work. The needs identified are for some immediate family support with everyday living and some financial concern at the end of the 3 months, given that the family had not planned for a longer period of reduced income than this.

• Family roles: All of the family members are experiencing role ambiguity with their new roles. Matt and Libby are now parents of two daughters. Sabrina is a big sister, and Hannah is the new infant. Matt expressed some role overload because he is assuming many of the typical daily household chores of meals, laundry, food shopping, and primary care provider for Sabrina.

• Family beliefs: They strongly state that “family comes first.” This was a planned pregnancy. They see them- selves as loving parents. They express some confusion about disciplining Sabrina given her recent behaviors.

• Family developmental stage: This is a nuclear family in the family-with-toddler stage. They also have a new in- fant; therefore, they are in two developmental stages at the same time.

• Family health knowledge: The family expressed that it needed more help in knowing how to help Sabrina. The parents do not know how to work with Sabrina to help her adjust to being a big sister. They are confused with Sabrina’s behavior of aggression, mood swings, clinging, and pointing at the baby and saying “take back.” They feel that she has lost some of her skills. Health literacy does not appear to be an issue.

• Family environment: At this time, they have enough room in their home for a family of four. They live in a safe neighborhood, but they do not know their neighbors well.

• Family stress management: They express feeling stressed about Sabrina’s behaviors. They are both tired. Sabrina is stressed, as evidenced by her behaviors and changes in behavior. They are dealing with the current situation on their own but are open to asking for help from family for the immediate assistance with daily living routines. They are open to learning more about how to help Sabrina.

(continued)

Family Nursing Assessment and Intervention 131

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• Family culture: They are white with an Italian Catholic background. They are of working lower-middle-class so- cioeconomic status.

• Family spiritually: They were both raised Catholic but are not practicing their religion. They do not belong to a church. They describe themselves as spiritual.

The parents identified that both of them and Sabrina are having difficulty adjusting to the expansion of their fam- ily and the shift in their family roles. They state that they are most concerned with Sabrina’s adjustment to the new baby. They state that they just do not know the best way to help her. They shared that they thought that since this was the “second time around” they believed they could be even better parents. They have been frustrated thinking about how to cope with what to do with two young chil- dren. The nursing diagnosis Readiness for Enhanced Par- enting is related to the new role of parents of two children and is evidenced by the parents’ subjective statements

about parenting, Sabrina’s reactions to the new baby, and parents asking for information and help on sibling rivalry.

Bono Family Intervention: Together, the nurse, along with Matt and Libby, review the family genogram (see Fig. 4-8), which helps the couple vi- sualize the family. The parents decide that Ava is the best person to come to help at this time. They say they will talk later with Matt’s brother and family about sharing some childcare. They complete a family ecomap (Fig. 4-9) to help assess what is creating stress and determine what could help alleviate family stress.

Vicki provides Matt and Libby with several educational packets about toddlers and new infants. She directs them to several online Web sites after she confirms that they have computer skills. They discuss ideas on how both par- ents can make personal time to spend with each daughter. They brainstorm ways to help Sabrina interact with Hannah but to keep Hannah safe from aggressive toddler behavior

132 Foundations in Family Health Care Nursing

Strong relationship

Weak relationship

Tense relationship

Direction of energy flow

Day-care center

Matt’s brother and wife

Family health insurance

Computer resources parenting

Libby’s work

Ava

Vicki, RN

Matt’s work

FIGURE 4-9 Bono family ecomap.

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to a new sibling. They plan to talk with the day-care providers so they can be effective with their help for Sabrina. They will call Ava as soon as they get home to plan for her visit. Vicki makes a follow-up appointment with the Bono family for their next well-baby visit and to see how they are progressing with both children.

Bono Family Evaluation: Vicki plans a follow-up phone call to check in with Libby and Matt. At the next visit, Vicki will revisit the family action plan with Libby and Matt to see whether their priority fam- ily concerns remain the same, or have decreased/in- creased or disappeared. Vicki plans to observe Sabrina’s behaviors to see how she is coping and whether she is adapting in more positive ways. She will talk with the par- ents to assess their anxiety level. She will observe the par- ents and their interactions with both children.

Nurse Reflection: Vicki reflects about her work with the Bono family. She de- termines that her therapeutic communication skills were excellent. She showed empathy and validated the family’s concern for the added stresses that a newborn child cre- ates for a family. The 7-day-old well-baby visit in the clinic setting presented an ideal time to observe and address parenting techniques and ease parental concerns. Learning how to shift focus from the more medical concern of the well-baby to family dynamics was the most challenging as- pect, yet also the most rewarding. The interventions were appropriate and truly empowered their overall ability to cope and function as a family.

Family Nursing Assessment and Intervention 133

SUMMARY

■ Conducting a family assessment includes the following components: assessment strategies, including how to select assessment instru- ments, determining the need for interpreters, assessing for family health literacy, and dia- gramming family genograms and ecomaps.

■ Family nurses must work in partnership with families as they build from a strengths model and not a deficit model.

■ Using the family assessment approach out- lined in this chapter, nurses and families to- gether identify the family priorities.

■ The Family Reasoning Web is a systematic method used to ensure that families are viewed in a holistic manner, which also helps to keep the interventions oriented to family strengths.

■ Family interventions need to be tailored to each individual family, with consideration of the family’s structure, function, and processes.

■ By subscribing to and selecting a theory- based approach to assessment, and formulat- ing mutually derived intervention strategies, families are more likely to be committed and follow through with family plans and interventions.

■ Family nurses serve as the catalyst for assess- ment, intervention, and evaluation that are specific to family identified needs.

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137

Family Social Policy and Health Disparities

c h a p t e r 5

Isolde Daiski, RN, BScN, EdD

Casey R. Shillam, PhD, RN-BC

Lynne M. Casper, PhD

Sandra M. Florian, MA, PhD Candidate

C r i t i c a l C o n c e p t s

■ Health disparities arise from complex, deeply rooted social issues, and are directly related to the social and political structure of a society.

■ Many factors contribute to (determine) health status, including educational level, socioeconomic status, and physical surroundings.

■ It is critical for nurses to recognize the link between the determinants of health and health disparities.

■ The social and political structures of a society influence how health care is delivered to and restricted from those in need. An upstream approach of health promotion and disease prevention is more effective than a downstream approach of reactive treatment of disease.

■ For those who are sick, access to quality, affordable health care should be considered a basic human right from a societal perspective. All aspects of health care should be designed to minimize disparities.

■ The policy decisions made by a society or government about families and how they are legally defined, what constitutes a legal relationship, and how health care is delivered have a profound effect on families and their health. Defining families from a legal perspective may contribute to health disparities by restricting access to social and health care services. Ethical issues can arise if we restrict care to families by how they are defined legally.

■ In the past, the profession of nursing had a well-defined role in advocating for vulnerable populations. Recently, nursing involvement in the development of health policy from either professional organization or individual perspectives has declined, resulting in increased health disparities for families.

■ Nursing professionals can benefit from theoretical and practical education about social policy issues, resulting in resounding effects on the health of a family.

■ Nurses can participate in advocacy related to family policies at all levels of health care systems in the context of society.

■ Illness of one member affects all members of the family, and in turn, family health affects all of society. Therefore, nurses have to consider the whole family unit within the context of the changed health situation and larger social system.

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This chapter exposes the nurse to social issues, be- havioral risks, and disparities that affect the health of families. Threaded throughout the chapter is the role of the nurse providing care within a framework of family nursing. Specifically, this chapter presents the key components that contribute to health disparities between families in the health care sys- tem. It explores health disparities in the context of health determinants, social policy, and the nurse’s role with respect to social policy. This chapter also discusses the unique factors that affect health policy and family health in both Canada and the United States. At the completion of this chapter, the nurse will have developed a broad understand- ing of social policy and how it can contribute to or mitigate health disparities. Armed with this knowl- edge, nurses can assist families to adopt health pro- motion and disease prevention strategies and can advocate for families in their organizations, com- munities, and nations for policies that minimize disparities and maximize access to resources.

DEFINING SOCIAL POLICY AND HEALTH DISPARITIES

It is critical first to create a common understanding of and foundation for the concepts underlying the substance of the chapter, such as health determi- nants, health disparities, and family social policy. This section also provides a brief overview of where both the United States and Canada stand in terms of health care coverage for all citizens.

Determinants of Health The determinants of health are defined as factors that directly influence the health of individuals, families, and communities (World Health Organi- zation [WHO], 2012a). WHO (2012a) defines social determinants of health as “the conditions in which people are born, grow, live, work and age, including the health system. These circumstances are shaped by the distribution of money, power and resources at global, national and local levels” (paragraph 1). More specifically, determinants include a person’s demographic characteristics, such as gender, race, and ethnicity, which cannot be changed, but to which societal responses can be altered. They also include characteristics that can be changed. These changeable characteristics are considered behavioral

or social. Behavioral determinants include activities such as eating habits, smoking, substance use, phys- ical activity, and coping skills. Social determinants include physical, social, and economic environ- ments, which further break down into income, housing, education, employment, access to health care, public safety, transportation, and availability of community-based resources (Hunter, Neiger, & West, 2011; Mikkonen & Raphael, 2010; U.S. Department of Health and Human Services [USDHHS], 2010). Along with demographic and behavioral ones, these social determinants have a strong, indelible influence on the health of families and will continue to contribute to health dispari- ties within family systems. An uneven distribution of the social determinants of health is often reported as the root problem of health disparities. Without the necessary financial resources for a healthy lifestyle, for example, it is difficult or even impossible to overcome such disparities.

Health Disparities Health disparities are defined in the United States and Canada as follows: (a) health differences for particular populations that are (b) closely linked to social or economic disadvantage and (c) result in distinct differences in the presence of disease, health outcomes, or access to care (Public Health Agency of Canada, 2012; USDHHS, 2010). Health and health status are complex concepts, and no universal agreement has been reached on the def- initions. WHO defines health as a “state of com- plete physical, mental, and social well-being and not merely the absence of disease or infirmity” (WHO, 2012b). This basic definition has not been changed since it was published in 1948. Later, the WHO (1986) added the following: “Health is seen as a resource for living, a positive concept” that affects the extent an individual is able to change and cope with the environmental factors. These definitions, combined, will be used for the purposes of this chapter.

Family Social Policy An exploration of health determinants and health disparities logically begins with a discussion of so- cial policy and its impact on families. But what constitutes social policy? Policy can be under- stood broadly as a course of action. Social policies

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are those policies that include social concepts, such as health, education, housing, and employ- ment affecting people’s everyday lives. Multiple social issues affect the health of families; in effect, they both create and mitigate health disparities. Nevertheless, social policies are developed for the purpose of mitigating health disparities and pro- moting equity and social justice. Social justice has been defined as “full participation in society and the balancing of benefits and burdens by all citizens, resulting in equitable living and a just or- dering of society” (Buettner-Schmidt & Lobo, 2012, p. 948). Some examples of social policies adopted in the United States that have had re- sounding effects on the health of families include the State Child Health Insurance Program (SCHIP), Medicare Part D, and the Welfare- to-Work program. These programs, enacted dur- ing the 2000s, were intended to improve access to health care, manage costs, reduce taxpayer burden, and thereby ultimately address health disparities. Interestingly, however, the very policies created to mitigate health disparities often result in the most vulnerable of these populations experiencing even further challenges. For example, Medicare Part D was enacted in 2006 to increase prescription cov- erage for older adults. Although mean annual out- of-pocket medication expenditures have decreased by 30% to 50%, older adults with persistent pain experience additional disparities (Millett, Everett, Matheson, Bindman, & Mainous, 2010). Multiple factors contribute to these disparities: pain medica- tions are often more expensive than many other medications, Medicare part D reimburses a lower percentage of pain medications than other medica- tions, and Medicare does not cover complementary or alternative therapies often used for pain man- agement such as massage therapy, acupuncture, or transcutaneous electrical nerve stimulation. Cur- rently, tremendous social policy changes are under- way in the United States with respect to health care access, changes that will bear heavily on the health of the population.

Briefing on the Current State of Health Care Policy The United States is in the midst of a transition to a more affordable and accessible health care system. The Affordable Care Act (ACA), passed in March 2010 (USDHHS, 2011b), seeks to enhance access

to health insurance. Despite much legislative and legal wrangling, the ACA was upheld by the U.S. Supreme Court in 2012 and implementation efforts began in 2013 (USDHHS, 2011b). The immediate benefit of the law will be to decrease disparities in access to health care insurance (and hence in health) by, for example, providing expanded cov- erage to young adults, addressing inconsistencies in Medicare drug benefits, and disallowing cover- age denial for many pre-existing health conditions. Additionally, beginning in 2013, the approximately 40 million uninsured U.S. citizens will be able to access health coverage through the Health Insurance Marketplace. The Marketplace, a set of government-regulated and standardized health care plans, will allow those without insurance to submit one application to choose from multiple private-sector policies. The selection is based on their individual eligibility, but there is no possibil- ity of being denied coverage or being charged a higher premium due to pre-existing treatments or conditions (USDHHS, 2011b).

Despite the progress sure to be wrought by these recent changes to the health care system, the United States will continue to face health disparity issues for many years to come. The long-standing lack of a universally available health care system has resulted in the development of social systems that will con- tinue to influence determinants of health (Mikkonen & Raphael, 2010; Raphael, Curry-Stevens, & Bryant, 2008). In fact, on an annual basis, it is estimated that nearly 50 million residents of the United States have no health insurance (Kaiser Family Foundation, 2011). More than three-quarters of those uninsured are from working families whose employers do not offer such coverage. Young adults are further dis- proportionately affected, as their low incomes make it more difficult to afford coverage if it is not provided by the employer (Kaiser Family Founda- tion, 2011). Women and children are also dispro- portionately affected because they are more likely to be living below the poverty level. Without a payment system for health coverage, many people delay seeking health care services, which increases the likelihood that illness or need for services will be at a crisis level when they enter the system and re- quire intensive downstream care. When this delay occurs, costs for health care increase.

The Centers for Medicare and Medicaid Serv- ices is a governmental agency in the United States with responsibility for Medicare, Medicaid, SCHIP,

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the Health Insurance Portability and Accountability Act (HIPAA), and the Clinical Laboratories Im- provement Amendment. Medicare is a health insurance program for people older than 65 years, certain disabled individuals younger than 65 years, and those with end-stage renal disease. Medicare covers nearly 50 million persons on an annual basis (Kaiser Family Foundation, 2012). Medicaid is a federal–state partnership health insurance pro- gram for eligible low-income groups and is man- aged by individual states. SCHIP was enacted in 1997 to address the lack of health insurance cov- erage of children who did not qualify for Medicaid. In 2009, President Obama signed the Children’s Health Insurance Program Reauthorization Act (CHIPRA) into law, providing new financial re- sources and options to expand and improve health coverage for children through both Medicaid and SCHIP (USDHHS, 2011c). This restructuring of the program has been successful in delivering cov- erage to more than 40 million children compared to only roughly 10 million in the earlier part of the century (USDHHS, 2011c). Enrollment growth is attributed both to the restructuring of the program and the economic downturn that began in early 2008.

Also worth noting is the Prenatal Care Assis- tance Program (PCAP), which targets pregnant women who meet certain income requirements and are eligible for part of the Medicaid system. The PCAP program includes prenatal care; deliv- ery services; postpartum care up to 2 months after the birth of the baby; referral to the Women, In- fants, and Children Program (WIC); and infant care for 1 year.

Because in the United States the majority of government health care programs are managed and delivered by individual states with only partial sup- port by the federal program, the burden to state budgets is enormous. Some unique programs have been implemented to help individual states bridge this gap in costs of health care coverage. The state of Massachusetts now mandates that residents have some form of health insurance, similar to the com- mon requirement that anyone with a car have collision insurance. Residents who do not have cov- erage are at risk for fines and tax penalties. A Mas- sachusetts state-subsidized plan, Commonwealth Care, was established to offer affordable health care to residents. Still, the potential exists of posing an additional burden on the poor, especially if they are

fined for not enrolling in something they can ill afford.

Canada By way of contrast, Canada has boasted universal, federally funded health care access for physi- cians’ services, hospital care, and diagnostics since 1966 (Medical Care Act, Canada, 1966). Canada’s Medical Care Act (1966) has had a major influence on social policy affecting health care. It ensures that on a national level, hospital care, doctor’s vis- its, and diagnostic services are accessible to every- one, without charge. Many people also have additional extended benefit plans through their employers, for medication coverage, dental care, and other therapies. Persons who are on social as- sistance programs, such as welfare or disability pensions, as well as those receiving old-age pen- sions, have additional publicly funded coverage for essential medications and basic dental care. These additional benefits do not, however, extend to those working for low wages with no additional benefits, who often cannot afford their medica- tions (Pilkington et al., 2010). Although some provincially funded coverage is available for this group, obtaining it is very difficult; it is only meant for dire situations of need, and disqualifies most of those working for low wages. As a result, many prescriptions remain unfilled as choices have to be made between paying the rent, feeding the family, and buying medications (Pilkington et al., 2010). Although universal health care exists, it does not cover all aspects of health.

So the system is not perfect. There is a gap in the health care delivery for those who lack private insurance. Provinces and municipalities provide long-term care for persons in need, but there are never enough facilities. At various times, some cash-strapped provinces have attempted to imple- ment user fees for doctor and emergency depart- ment visits. Due to immense public pressure, the federal government so far has stepped in to pre- vent this from happening. One policy, severely curtailing federal health care funding for refugees, was implemented in 2012 by the federal govern- ment, leaving this vulnerable and often trauma- tized group unprotected (Canadian Association of Community Health Centres [CACHC], 2012; Service Canada, 2012). This move was seen as a major injustice by the public—physicians’ and nurses’ associations, as well as hospitals and

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community health centers, have voiced a strong unified opposition to this policy. In the meantime, much of needed care for this group is provided free by volunteer health providers, while individ- ual hospitals and provinces are absorbing the costs for emergency treatments within their general budgets. Care is provided first and questions are asked later (CACHC, 2012).

MODELS

There are several models that pertain to health determinants and implementation of social policy that are worth mentioning briefly here. The Social Determinants of Health Model (Dahlgren & Whitehead, 1991; Institute of Medicine [IOM], 2002, p. 404) conceptualizes an approach to assess- ment and planning care using a foundation of family nursing theory. This model, depicted in Figure 5-1, can assist the nurse in understanding how—aside from the behaviors of individuals— physical, social, environmental, and psychological components influence and affect the state of family health. In this model the general social, economic, cultural, and environmental conditions are the con- text and give rise to the next layer, which consists of the social determinants of health, the specific social and physical factors representing healthy or unhealthy living conditions. In turn, these fac- tors influence social and community networks, which then influence the lifestyles possible within this context. The center of the model finds the individual/family with their age and gender, enabled/ restricted by the contextual layers. Nurses must

take into consideration the family within context to provide holistic care. Changing any of the deter- minants depicted can bring about changes in family health, as they impinge upon the primary underly- ing conditions of health and illness (Canadian Nurse Association, 2012). Using this model pro- vides an overview of how all factors interrelate and what possibilities for health promotion may emerge at the institutional and community/societal levels.

The Care Model (Fig. 5-2), pertaining specifi- cally to health care delivery, can be used to guide nurses’ care for families/communities in the context of implementing social policy. Initially developed by the Robert Wood Johnson Foundation to deliver quality care to those with chronic illness, the Care Model has since been adapted to assist health care teams change the wider health care delivery sys- tems with a goal of eliminating health disparities (Dahlgren & Whitehead, 1991). Components of the Care Model include the health care organiza- tion, community resources and policies, decision support, delivery system support, clinical informa- tion systems, and self-management support. Fur- ther, the Care Model has the potential to frame the work necessary to address complex self-management problems with a social-policy approach, which in- cludes forming community partnerships to support self-management. Acknowledging the importance of family and community is essential in order to implement a successful program, as humans are re- lational social beings depending on each other. A proactive health care team employing the Care Model, for example, might initiate an intervention policy of a community garden and kitchen within a poor neighborhood, where many clients have

Family Social Policy and Health Disparities 141

Agriculture and food

production

Education Water and sanitation

Health care services

Housing

Work Environment Unemployment

Living and working conditions

G en

er al

so cio

eco nom

ic, cultur al, and environmental conditionsSoc

ial a nd community networks

Ind ividu

al lifestyle factorsAge, sex, and constitutional factors

FIGURE 5-1 Social Determinants of Health Model suggested by Dahlgren and Whitehead (1991).

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type 2 diabetes and lack the resources to buy healthy foods. Clients referred to this program can share growing food and cooking meals together. This in- novative policy adds new resources, while enhancing client skills and self-management support. At the same time, the program also strengthens commu- nity ties and cohesion.

Similarly, Canadian scholars Doane and Varcoe (2005) describe a socio-environmental approach to nursing care focused on relationships within fam- ilies, communities, and health care systems. Health is seen by these authors as a socio-relational experi- ence that is shaped by contextual factors. As in the models discussed earlier, nurses need to take into consideration not only the clients and their families but also all of their physical and social surroundings. Working closely with families and communities and building on the concept of health as a resource for living, the socio-environmental approach recognizes that health is deeply rooted in human nature and environmental structures (WHO, 1986). Knowing their needs and situations, empowered communities therefore are able to promote health with the capacity “to define, analyse and act on concerns in one’s life and living conditions” (Doane & Varcoe, 2005, p. 29). This approach, like the Care Model, functions under the premise that a comprehensive social-health-policy approach must be utilized for

optimal delivery of health care, as change is most effectively brought about at the level of physical and social environments.

SOCIAL DETERMINANTS AND RESULTING HEALTH DISPARITIES

Health disparities are such an overwhelming prob- lem in the United States that Congress charged the Institute of Medicine (IOM) to investigate and de- velop a report on the subject. The landmark IOM report, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care (2003), detailed long-standing and deeply rooted inequalities in health care directly related to race and ethnicity. Despite the IOM providing a comprehensive re- view of the contributing factors to health disparities and recommendations to promote health equity, a 2012 evaluation on the progress toward reducing health disparities reveals continued health dispari- ties (IOM, 2012). For instance, African Americans continue to experience higher rates of death from heart disease and cancer than white Americans, and children who live in urban areas are more likely to have asthma than children living in less population dense areas (IOM, 2012). These health disparities continue to correlate with certain environments

142 Foundations in Family Health Care Nursing

Care Model

Functional and Clinical Outcomes

Productive interactionsProductive interactions

Health System Health care organization

Community

Self- management

support

Clinical information

systemDelivery system design

Decision support

Resource and policies

Informed, activated patient

Prepared, proactive

practice team

FIGURE 5-2 The Care Model. (From Texas Association of Community Health Centers. (2008). The care model. Retrieved April 29, 2009, from http://www.tachc. org/HDC/Overview/Care Model.asp, with permission.)

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and lack of adequate resources in multiple areas, such as limited access to health care, exposure to environmental toxins in impoverished environ- ments, personal behaviors related to substance abuse, inadequate nutrition, lack of physical exer- cise, and lack of treatment for mental illnesses (IOM, 2012). This section will discuss key social determinants of health, their direct outcomes and effects, and the associated health disparities.

Poverty Social determinants of health are interrelated and mutually reinforcing. Poverty is likely the most fundamental social determinant contributing to health disparities. It influences the other social de- terminants, such as housing, food and job security, education, and lifestyle choices, and is related to racism and chronic illness. So, it is impossible to discuss one without delving into the others. For in- stance, poor-quality housing or overcrowding—a result of poverty—affects health by contributing to stress and safety issues, while mildew and dampness might trigger asthma or other respiratory condi- tions. Unemployment/employment insecurity, which can result in poverty, limits the choice of affordable housing, and living in a low-resource community further adds to unhealthy lifestyle choices. For example, areas where affordable hous- ing is located tend to lack public transportation and grocery stores, and they have less access to fresh fruits and vegetables, which makes shopping for, and eating, healthy foods difficult. Often, the only choice is to buy unhealthy processed foods from the local variety stores, and frequently at high prices (Hilmers, Hilmers, & Dave, 2012).

Poverty creates serious issues when it comes to housing and can result in homelessness for many families who live below the poverty level. Homeless children are three times more likely to have been born to a single mother than their nonhomeless counterparts (National Center on Family Home- lessness, 2008). Education is a strong predictor of eventual stability, success, and health, yet education is not (or cannot be) emphasized within homeless communities (National Alliance to End Homeless- ness, 2006). In the end, homeless children are less healthy—they are more likely to have developmen- tal delays, to have learning disabilities, and to re- peat a grade in school (National Center on Family Homelessness, 2008).

In the United States today, as well as in Canada, concern exists over a widening income gap leaving many families and individuals below the poverty level. Interestingly, although the annual median household income for 2011 experienced a contin- ued decline by 1.5% to $50,054, the national poverty rate only declined 0.1%, indicating that the top-income-earning Americans continue to increase in wealth and the middle- and lower- middle-class Americans are experiencing signifi- cant declines in income (Luhby, 2012). This widen- ing income inequality between the wealthy and the middle class poses a serious threat of more Americans heading toward poverty. Today, more than 4.9 million Americans, including 1.2 million children, live in poverty in the United States. As explored further below in the sections on race and gender, African American families and those with female heads of households disproportionately ac- count for those living at or below the poverty level. African Americans earn 61% ($31,969) of what non-Hispanic white individuals earn ($52,423). Women continue to earn approximately 77% of what men earn overall (DeNavas-Walt, Proctor, & Smith, 2007).

Canada fares only slightly better, as there is a widening income disparity too. Whereas the top 10% of incomes represent more than a quarter of total incomes, the bottom 10% only represents 1/40th of total incomes. The 80% in between earn the remaining 75% (Canadian Centre for Policy Alternatives [CCPA], 2013). The Canadian Index of Wellbeing [CIW] (2012, p. 2), reported that Canada, since 2008, is experiencing an economic backslide. From 1994 to 2010, even though Canada’s Gross Domestic Product (GDP) grew by an im- pressive 28.9%, improvements in Canadians’ well- being grew by a significantly smaller 5.7%. The key message is that despite years of steady eco- nomic growth in Canada, this prosperity has not been fairly distributed among the Canadian popu- lation (CIW, 2012), as income disparities continue to rise. CIW further pointed out that income in- equality, measured as the difference between the richest 20% and the poorest 20% of Canadian fam- ilies, is particularly problematic, as this gap has grown by over 40% since 1994.

In the United States, availability of employment- based health coverage has declined from 64.4% in 1997 to 56.5% in 2010 (U.S. Census Bureau, 2010). This decline has left many more workers

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and their dependents without health coverage. The cost of health coverage is well beyond the means of those living in or close to the poverty level. Meanwhile, the public debate on an appro- priate level of support for families who lack basic housing, food, health services, or social stability continues. Another important factor that affects poor families is a lack of affordable day care. To relieve stress on the families and to escape poverty, families need reliable and quality day care allowing both parents to work.

Multiple other factors worsen the influence of poverty on health outcomes (Woolf, Johnson, Phillips, & Philipsen, 2007), factors such as access to resources, health literacy, gender, ethnicity, and education. All of these factors are considered major contributors to poor health, particularly cardiovascular disease (Shikatani et al., 2012), type 2 diabetes (Chaufan, Constantino, & Davis, 2011; Pilkington et al., 2011), and mental illness (Mental Health Strategy of Canada, 2012; Mental Health Commission of Canada, nd). It is impor- tant that nurses and other health professionals support policies that help to eradicate poverty and the resulting health disparities (Kirkpatrick & Tarasuk, 2009).

Gender Gender is a social determinant everywhere, with women and sexual minorities experiencing dispar- ities in access to resources and well-paying jobs (Mikkonen & Raphael, 2010). Women earn less than men when performing the same job, approxi- mately 77% of men’s wages (Devas-Walt, Proctor & Smith, 2007), yet they are more likely than men to be heads of single parent households. In fact, gender is one of the factors that further exacerbates poverty and, in turn, contributes to even greater health disparities. Gender affects health care in other ways as well. For example, women with car- diovascular disease are more likely to receive a mis- diagnosis, as their symptoms do not follow the typical presentation men demonstrate, and most tests for cardiovascular disease were developed based on male physiology (Schiff, Kim, Abrams, Cosby, & Lambert, 2005). Women are also less likely to receive referrals for surgical procedures, pain management, and other health conditions even when displaying comparable symptoms as male controls.

Race and Ethnicity Racial and ethnic minorities, or those of First Nation status, tend to have lower incomes and lower-quality jobs (Mikkonen & Raphael, 2010), factors that contribute directly to health disparities. Recent Canadian data show that the health of non- European immigrants of color deteriorates over time whereas the health of European immigrants is actually superior to that of Canadian-born resi- dents. Hispanic/Latino men are three times as likely to contract HIV as white men, and Latino populations are disproportionately affected by HIV, accounting for nearly 20% of new infections in the United States (Centers for Disease Control and Prevention [CDC], 2013a). Other examples of disparities based on race and ethnicity are as fol- lows: African American, American Indian, and Puerto Rican infants have higher death rates than white infants; African Americans, Hispanics, American Indians, and Alaska Natives are twice as likely to have diabetes than non-Hispanic whites; and Hispanic and African American older adults are less likely than non-Hispanic whites to receive in- fluenza and pneumococcal vaccines (CDC, 2013a; Rodriguez, Chen, & Rodriguez, 2010).

Additionally, members of these groups may ex- perience overt or subtle differences in treatment in the health care system, due to discrimination against minority populations. Self-reported racial/ ethnic discrimination encountered by health care providers is significantly associated with lower quality of care indicators, such as development of foot disorders and regulation of HbA1c (Peek, Wagner, Tang, Baker, & Chin, 2011). Other re- cent studies indicate that although minorities are more likely to require health care, they are less likely to receive health services. Further, even when access is equal, minorities are far less likely to re- ceive surgical or other therapies. Nurses have the moral obligation to advocate for clients who are faced with discrimination in the system and ensure that they receive the same care and treatment as everyone else.

Presence of Chronic Illness The presence of chronic illness is a determinant that leads to health disparities beyond the mere presence of the chronic illness. It often results in poor quality of life and increased financial strain, especially for those who have no or limited access

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to health care and resources. In severe cases chronic illness also leads to inability to work and therefore forces those who are ill to rely on the social safety net, which has been increasingly cut back over the last 20 years (Mikkonen & Raphael, 2010). Despite improvements in treatment and management strategies for chronic illness im- proving both quantity and quality of life, social determinants continue to place disadvantaged populations at risk of poor outcomes from chronic illness. Likewise, the presence of chronic illness itself is a determinant that leads to health dispar- ities for and between families. If one family mem- ber is ill the whole family is affected and often has to pick up the financial and care burden. This is true for the United States but also in Canada where medications and home care, for example, are not covered by universal health care. Unless a patient has private insurance benefits, these costly treatments place a burden on families. The following section explores several common chronic illnesses and the ways that they contribute to health disparities.

Type 2 Diabetes Type 2 diabetes is on the rise and is four times more likely in low-income communities than in their higher-income counterparts. Lower-income communities often also coincide with high pro- portions of immigrant population and people on social assistance (Mikkonen & Raphael, 2010). Health promotion efforts involving diet and exercise to ward off obesity have a significant in- fluence on disease rates; however, they require sufficient resources (Webster, Sullivan-Taylor & Turner, 2011). Due to lack of resources, preven- tive measures, such as keeping a healthy weight, are much less likely in lower-income groups (Chaufan et al., 2011; Dinca-Panaitescu et al., 2012; Pilkington et al., 2011; Raphael, 2008; Raphael, Daiski, Pilkington, Bryant, Dinca-Panaitescu & Dinca-Panaitescu, 2011). Aboriginal peoples, for example, only developed diabetes when they started to eat Western foods, instead of their traditional diets. Before the 1940s, this disease was virtually unknown in that group (Health Canada, 2011).

Dinca-Panaitescu et al. (2012), however, pres- ent research showing that even with obesity levels the same, diabetes rates were four times higher among those persons who lived in lower-income

neighborhoods, confirming that the reasons for this disparity are complex and multilayered. These layers include lack of needed resources for a healthy lifestyle, such as healthy diets; lack of ex- ercise; inability to pay for prescription drugs; lower incomes; unhealthy environments; racial and/or ethnic discrimination; and stress. Researchers have found evidence that worry and chronic stress, which leads to high cortisol levels, plays a role in chronic disease (Brunner & Marmot, 2006). Chronic stress disproportionately affects most minority ethnic groups who are often subject to discrimination and the constant worries attached to low incomes. When people have to cope with the added expenses of the illness, it increases stress further, creating a cycle and exacerbating chronic illness. As stated earlier, the social determinants that create health disparities are multilayered, complex and mutually reinforcing.

Asthma and Other Lung Diseases According to the American Lung Association (2008), approximately 34.1 million Americans re- port a diagnosis of asthma, and the incidence of asthma is increasing, with similar reports from Canada (Public Health Agency of Canada, 2012). Direct health costs for treating asthma are esti- mated to be $10 billion annually. Asthma is the leading chronic illness among children and is the third leading cause of hospitalization for children younger than 15 (American Lung Association, 2008). It is associated with poor-quality physical environments, such as increased air pollution and substandard housing. Major asthma attack triggers include secondhand tobacco smoke, dust, pollu- tion, cockroaches, pets, and mold. Less common triggers include exercise, extremes of weather, food, and hyperventilation (National Center for Environmental Health, 2013).

In adults we find chronic obstructive pulmonary disease (COPD) and lung cancer to be serious chronic diseases that shorten life and decrease its quality. Lung diseases, like all other diseases, are associated with social determinants such as poverty, as well as with considerable health care costs.

HIV/AIDS More than 1 million people live with HIV/AIDS today in the United States. AIDS is now seen as a chronic, treatable disease in America and other de- veloped countries (AIDS in America, n.d.). With

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the introduction of antiretroviral drugs in the 1990s, HIV has been treated as a chronic illness, and more people are living longer with the infection. Unfor- tunately, the treatability has contributed to an “unsafe sex problem” leading to complacency, and the infection rate, instead of declining, has remained stable since 2006 (AIDS in America, n.d.).

Mental Illness Mental illness is widespread and very debilitating, particularly due to the stigma attached. It often leads to homelessness and family breakup, two other significant health determinants. It is esti- mated that one in five persons in North America will have a mental illness at some point in their lives and it can strike at any age, including childhood. Those with mental illness who are poor are more likely to end up homeless and destitute (Canadian Mental Health Association [CMHA], 2009).

of nurses to help clients with chronic diseases is teaching health literacy.

Health Literacy Health literacy, first noted in the Healthy People 2010 objectives, is defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (National Network of Libraries of Medicine, n.d.). Health literacy is one of the so- cial determinants that contributes to health dis- parities; but though a relationship between health disparities and health literacy has been estab- lished, it is complex. The IOM found that ap- proximately 9 out of 10 adults have difficulty understanding health information (IOM, 2011), and the Canadian Council on Learning (2007) found 60% of Canadians are health illiterate. In- dividuals with low health literacy do not under- stand health information, so it affects their health outcomes disproportionately because they seek fewer health screenings, they use urgent or emer- gency care, they experience errors in medication dosing and scheduling, they lack alternatives in treatment regimens, and they are unable to access accurate health-related information.

Nurses, as educators and advocates, must con- sider the health literacy of the patients and fami- lies that they serve. Explaining health-related concepts in plain language will help to ensure that patients understand the information cor- rectly. Nurses may also assist families by filling out complicated forms when applying for social support or filing insurance claims (Street Health Report, 2007).

The Definition of Family The definition of family, rarely challenged until recent times in the United States, has major social implications in terms of health disparities. Most directly, the definition of family can influence who is able to access health care and social support resources and who is not. The typical definition of family is “two or more people who are related by blood, marriage/partnership or adoption, that live together for a certain period of their lives” (Statistics Canada, 2011). In Canada “the tradi- tional family, a married couple with 2.5 children,

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In North America it is estimated that 4 persons out of 10 will develop cancer in their lifetime. In recent years, with improved detection and treat- ments, many cancers are now cured or, like AIDS, can become chronic diseases that people live with for some time. Similarly, cardiovascular disease is becoming a chronic health condition (Hemingway, 2007; Shikatani et al., 2012), with those affected needing support to manage their disease. As per- sons with chronic illnesses live and work within their communities, they need to learn how to self- manage their conditions (Health Council of Canada, 2012). Nurses as advocators and coaches have a large role to play here, when they care for individuals and families within the context of their physical and social environments. One of the roles

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has been reconfigured to include cohabiting cou- ples (with or without children), lone parent fami- lies, blended or step-families, same-sex couples, couples who remain childless by choice, and inter- generational families” (Statistics Canada, 2011). The definition is evolving as families evolve, but perhaps not as quickly as necessary.

Members of a “family” can be given access to or denied health insurance, housing, and access to social and health programs. In the United States, the Administration for Children and Families, overseen by the USDHHS, “is responsible for federal programs that promote the economic and social well-being of families, children, individuals, and communities in the U.S.” (USDHHS, 2013a). Such programs include, for example, Temporary Assistance to Needy Families (TANF), the Healthy Marriage Initiative, and Head Start (USDHHS, 2008). But because of how families are legally de- fined, many individuals who consider themselves part of a family unit would be ineligible for these programs. In fact, a limited legal definition of family can have devastating results. Take, for ex- ample, one instance in Black Jack City, Missouri, where a family composed of two parents and three children was denied an occupancy permit simply because the parents were not legally married and the male parent was not the biological father of the oldest child residing in the household (Coleman, 2006).

Canada is somewhat more liberal in this regard. The provinces, with exception of the Province of Quebec, legally recognize the common-law fam- ily, meaning two people cohabitating without being officially married (Statistics Canada, 2011). In 1967, former Prime Minister Pierre Elliott Trudeau, then Justice Minister, declared: “The state has no business in the bedrooms of the nation” (cited by Overall, 2004, p. 1). Today, same-sex marriage is legally recognized in that “a couple may be of the opposite or same sex” (Statistics Canada, 2011). Canada’s recognition of both same-sex and common-law families re- sults in major implications for access to spousal benefits and pensions, child custody, and other traditionally family-oriented rites of inheritance. Previously, only traditionally married couples of the opposite sex were recognized as beneficiaries, leaving many nontraditional spouses destitute after their life partners died or divorced them. Legal definitions of family in the United States

will continue to be blurred as families continue to evolve through adoption, same-sex marriage, cohabitation, and blended families.

Education Education is another key social determinant of health. Schools in affluent areas have better re- sources for the most part. In poor areas, poor qual- ity education and high drop-out rates contribute further to poverty, preventing access to high-quality jobs and incomes. School districts vary greatly, as does the quality of education they provide. They may be as small as a single grade school or as large as the multimillion-pupil New York City system. In the United States, the historical expectation is that a locally elected or appointed school board will de- termine the way in which the community’s children will be educated. Federal funds, often for special education or programs for impoverished students, account for only about 7% of school expenditures (Ramirez, 2002). The reporting about schools with- out texts, without modern science laboratories or computers, and cutting back on “frills” such as music, art, and gym has stimulated an active search for ways to make equitable funding available. Given the high positive correlation between health status and level of education, this determinant of health and associated policies should be an area of concern to every nurse. Education makes it possible to obtain a better job and higher income and is the best way out of poverty.

Health Resources Despite the presence of the universal health insur- ance program in Canada, some major inequities re- main. For example, in rural areas, access to health care is often very limited. This is of particular con- cern in Canada’s far north, inhabited mainly by First Nations people. Communities there are served mostly by nurses. Although the nurses have the opportunity to provide primary health care, resources are limited. For major health problems requiring surgical or other complex interventions, or even to give birth, patients are routinely flown out to larger centers, resulting in family separation and lack of community support for the patient. Using technology such as telemedicine provides hope for improvements of health care in these un- derserviced communities.

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RISKS AND BEHAVIORS THAT CONTRIBUTE TO DISPARITIES

This section focuses on the behavioral health de- terminants that contribute to health disparities. In popular discussions, and sometimes among profes- sionals, health-related behaviors are treated as re- sulting solely from conscious choice by individuals, who are to blame if their risky behavior leads to poor health outcomes. Many health activists, by contrast, seek to place blame on commercial inter- ests that profit from these behaviors or on govern- ment policies that protect them. Research on the causes of risky behaviors is much less developed than is research on the consequences of such behaviors. But even so, it is clear that these risky behaviors are the result of multiple causes and can be influenced by health policy in multiple ways (Berkman & Mullen, 1997; Singer & Ryff, 2001). This section explores obesity, alcohol use, smoking, and other risk factors specifically pertinent to adolescents.

Obesity In North America, one of the most disturbing trends in health over the past decade has been the increase in the proportion of the population that is overweight or obese. Obesity is defined as body mass index (BMI) at or above the 95th percentile of the sex-specific BMI, according to the CDC’s BMI-for-age growth charts (CDC, 2010). BMI is calculated as weight in kilograms divided by the square of height in meters. Obese people are more likely than are those of normal weight to suffer from heart disease, stroke, diabetes, gallstones, sleep apnea, and some types of cancer (USDHHS, 2009). Hypertension, musculoskeletal problems, and arthritis tend to be more severe in obese people. Obesity increased little in the U.S. popu- lation between the early 1960s and 1980. Since 1980, however, obesity has increased dramatically in the United States. Fifteen percent of American adults were obese in the mid-to-late 1970s. The prevalence of obesity doubled in the two subse- quent decades to 31% by 2000, and by 2009–2010, nearly 36% of adults were obese (CDC, 2012). Women (36.2%) are more likely than men (32.6%) to be obese (Shields, Carroll, & Ogden, 2011).

Obesity rates are lower in Canada than in the United States, but Canadian rates have also

increased rapidly in recent years. Approximately 24% of Canadian adults were obese in 2007–2009 (Shields et al., 2011). In contrast to the United States, in Canada men were more likely to be obese than women; trends in the incidence of obesity are now similar for both: in 2007–2009 24.3% of men and 23.9% of women were obese in Canada (Shields et al., 2011).

In 2009–2010, over one-third of adults age 65 and older in the United States were obese (CDC, 2012). Since 1999, the incidence of obesity among older adults has increased, especially among men. With projections for the number of older adults to more than double from 44.2 to 88.5 million by 2050, obesity in this group will contribute signifi- cantly to health care costs (Fakhouri, Ogden, Carroll, Kit, & Flegal, 2012).

The percentage of children and teenagers who are obese has been increasing dramatically since the 1980s. In the mid-1980s in the United States, only 5% of children were obese, yet by the early 2000s, obesity increased to 18% among children and adolescents (Federal Interagency Forum on Child and Family Statistics, 2012). A recent report in August 2013 by the CDC (2013b) reveals for the first time in decades that there is a slight improve- ment in obesity rates in the United States among preschool children who live in low poverty. From 2008 through 2011, data were collected in 43 states and territories for preschool children who partic- ipate in the Women, Infants, and Children (WIC) federally funded program. There was a slight drop in the obesity rates in 19 of these states, with the largest drop of 1% in Florida, Georgia, Missouri, New Jersey, and South Dakota. One factor that could contribute to this new trend is changes in the WIC program, which include eliminating juice from food packets, less food with saturated fats, and easier access to fruits and vegetables. Along with these changes, the breastfeeding rates in the United States continue to increase. Whereas this is an excellent trend, childhood obesity remains of deep concerns as one in eight children are obese, with one in five African American chil- dren and one in six Hispanic children still obese. Boys and girls have been historically about equal in their likelihood to be overweight, but in 2007–2008, a higher percentage of boys (21.2%) were obese than girls (17.3%). Mexican American and African American teenagers are more likely to be over- weight than are non-Hispanic white teenagers.

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By 2007–2008, the percentage of overweight Mexican American teenagers was 24.2%, compared with 22.4% for African Americans and 17.4% for whites (Federal Interagency Forum on Child and Family Statistics, 2012).

By comparison, in 2011, 24% of 12- to 17-year-old Canadian boys were obese and about 17% of girls (Human Resources and Social Development Canada, 2013). Over the past quarter century, the percentage of Canadian adolescents ages 12 to 17 who are overweight has more than doubled, and the percentage of those who are obese has tripled. North American children who eat fruits and veg- etables frequently are less likely to be overweight. By contrast, those who watch TV, play video games, or spend time on the computer are more likely to be overweight (USDHHS, 2010).

U.S. medical expenditures related to obesity are estimated to be as high as $147 billion dollars annu- ally (Finkelstein, Trogdon, Cohen & Dietz, 2009). The most common recommendations for the treat- ment of overweight and obesity include participating in physical exercise and following dietary guidelines for healthy eating. Although healthy diets and exer- cise are part of the solution to the obesity epidemic, nurses must consider constraining social and policy factors determining health, including lack of access to healthy foods, unsafe neighborhoods with limited facilities for physical exercise, and cultural beliefs and attitudes about weight and health. Overall, we know that losing weight reduces and sometimes cor- rects type 2 diabetes. Obesity plays a major role in cardiovascular diseases and puts unnecessary stress on joints, which causes them to become deteriorated with painful arthritic symptoms. In general this con- dition leads to debilitating health problems and may also lead to self-esteem issues, particularly in younger people.

Tobacco Smoking and substance abuse are critical behav- ioral health determinants that lead to multiple health disparities among families in the United States and Canada. Although smoking is still preva- lent, it has declined steadily among adults in the United States. In 1965, more than half of adult men smoked, as did a third of adult women. Smoking has declined more rapidly for men than for women, and the gap between sexes has narrowed. By 2011, approximately 21.5% of adult men and 17.3% of

adult women were current smokers. Prevalence of cigarette smoking is highest among American In- dians/Alaska Natives (31.4%), followed by whites (21.0%), African Americans (20.6%), Hispanics (12.5%), and Asians (excluding Native Hawaiians and other Pacific Islanders) (9.2%) (USDHHS, 2011a). In Canada, the proportion of daily smokers decreased from 24% to 15.1% between 1995 and 2011. In 2011, another 5% of Canadians reported being occasional smokers. As in the United States, more men (22.3%) were smokers than women (17.5%) (Human Resources and Social Develop- ment Canada, 2013).

Smoking is a significant behavioral health de- terminant. It harms most body organs, reduces circulation, and causes several diseases, including coronary heart disease, chronic obstructive lung diseases, lung cancer, leukemia, and other types of cancer. Smoking also has adverse reproductive effects and is associated with infertility problems, low birth weight, and stillbirth. Smokers are at higher risk than nonsmokers of developing many other diseases and chronic health condi- tions (USDHHS, 2011a). The myriad of health implications from smoking are of critical impor- tance for nurses to consider when planning care for families with members who smoke. The im- pact of the behavior on the entire family should be included in all health teaching, with realistic goals set by the nurse and family in collaboration with one another.

Alcohol Use of alcohol is a risk factor and determinant for a wide range of poor physical and mental health outcomes. Alcohol use is legal for adults, though impaired driving (DUI) and, to a lesser extent, pub- lic drunkenness are banned. Alcohol use is illegal for minors, though widely tolerated in both the United States and Canada. In 2011, 62.6% of American adult men (age 21 or older) and 50.9% of American adult women reported that they cur- rently drank alcohol. Almost one-third of men and 16% of women reported “binge drinking” (defined as the consumption of five or more drinks on one occasion for men, and four or more drinks for women) during the preceding month. In the United States, non-Hispanic whites were more likely than other race groups to be current drinkers, whereas Native Americans were more likely than

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other race groups to be binge drinkers (USDHHS, 2011b). In Canada in 2011, 18.7% of those who consumed alcohol engaged in chronic drinking, de- fined as 10 or more drinks per week for women and 15 or more for men; and 13.1% engaged in acute drinking, defined as three or more drinks during a single occasion for women, and four or more drinks for men (Health Canada, 2012).

The prevalence of illegal drug use, the particular drugs used, and the methods in which they are taken vary considerably over time, among racial and ethnic groups, across social and economic classes, and among regions of the country or even neighborhoods. In 2011, 21.4% of Americans ages 18 to 25 reported that they were current users of illicit drugs; this rate lessened to 6.3% among adults age 26 or older (USDHHS, 2012). In 2011, illicit drug use of one of five substances was re- ported to have decreased from 11.3% in 2004 to 4.8% in 2011 among the Canadian population age 15 or older (Health Canada, 2012). Alcohol consumption can result in malnutrition, liver dis- ease, and both short- and long-term cognitive im- pairment (Antai-Otong, 2006).

Alcohol and substance abuse have serious conse- quences for individual health. Individuals who en- gage in excessive drinking are more likely to suffer from high blood pressure and to develop chronic dis- eases such as liver cirrhosis, pancreatitis, and different types of cancers. Excessive drinking also affects psychological health. Substance abuse also causes unintentional injuries produced by car accidents, drowning, falls, and other types of incidents.

Adolescence Once children survive the first year of life, the risk of death decreases dramatically (Federal Intera- gency Forum on Child and Family Statistics, 2012). The risk of death increases again in the teen years as youths, especially male and minority youths, are subject to heightened risk of fatal motor vehicle accidents and homicides. In the United States, African American teenage men are more often vic- tims of homicide than teens in other racial and eth- nic groups (Federal Interagency Forum on Child and Family Statistics, 2012). For young Americans ages 15 to 24, the most common causes of death in 2009 were unintentional injuries and homicide, ac- counting for more than three-fourth of deaths to young people. Additionally, the risk of dying for

those between 15 and 24 years of age was more than twice as high for boys as for girls. Asian or Pacific Islander teenage girls have the lowest mor- tality rates, and African American teenage boys have the highest. Automobile accidents account for more deaths among American Indians or Alaskan Natives, followed by white male and female ado- lescents, than among other minority adolescents (Federal Interagency Forum on Child and Family Statistics, 2012). These distressing statistics can be attributed to the fact that adolescents experiment more with risky behaviors that result in health consequences.

Still, in the United States, from 1991 to 2011, adolescent smoking and alcohol consumption sig- nificantly declined (Federal Interagency Forum on Child and Family Statistics, 2012). And though the use of illicit drugs increased substantially in the mid-1990s, these rates likewise decreased during the 2000s. Despite some historical fluctuations in the rate of smoking over the last several decades, by 2011 only 10% of high-school seniors reported regular cigarette use (Federal Interagency Forum on Child and Family Statistics, 2012). The risky behaviors of smoking, alcohol use, and drug use are all much more likely among white than among mi- nority youths (Casper & Bianchi, 2002). African Americans were the least likely to report engaging in most of these behaviors. The rates of alcohol use for Canadian adolescents remained relatively stable during the 1990s, but decreased in the 2000s. Dur- ing 2007–2008, the rates of alcohol use hovered between 46% and 62% for both boys and girls ages 12 to 18, depending on the province (Drug & Alcohol Use Statistics, 2012). Similar to the United States, 12th-graders in Canada also exhibit the highest rates of alcohol and drug use among ado- lescents (Canadian Centre on Substance Abuse, 2011). Fewer Canadian adolescents smoke today than was the case a decade ago. In 2011, slightly more than 9% of adolescents ages 15 to 19 smoked daily or occasionally compared with nearly 30% in 1994 (Human Resources and Social Development Canada, 2013).

Researchers evaluating large data sets of repre- sentative samples of young people over time, such as the National Study of Adolescent Health, are be- ginning to untangle the effects of peer influences, family factors, school climate, and neighborhood contexts on youth risk-taking behavior (Duncan, Harris, & Boisjoly, 2001; National Center for

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Health Statistics, 2012). As this section reflects, multiple, complex, and challenging factors con- tribute to the nurse’s ability to evaluate risks and behaviors that lead to health disparities. Families comprised of members demonstrating one or more of these risks or behaviors may present challenges to the nurse developing a comprehensive plan of care that meets all needs of all family members. Nevertheless, it is critically important that each family member be assessed and evaluated when cre- ating a family plan of care.

SOCIAL POLICY

As discussed earlier, the U.S. Public Health Service has set a target goal to eliminate health disparities among the poor, minority groups, and genders. The U.S. Department of Health and Human Serv- ices Bureau of Primary Health Care has developed the Health Disparities Collaborative as a mecha- nism to change the delivery of care to populations at risk and meet this goal (Gillis, 2004). The great- est impact will be achieved through an upstream approach of primary prevention and health promo- tion (Falk-Rafael & Betker, 2012; Smith Battle, 2012). This section presents some current social policy aimed at mitigating health disparities and then explores several key areas in need of additional social policy to minimize disparities.

Educational Policy Education is a crucial social determinant of health and illness disparities. Educated individuals are more likely to follow health practice advice that substantially reduces adult and children health risk factors. Better-educated individuals are also more likely to look for medical care when they get sick, and thus they receive more health care (Cutler, Deaton, & Lleras-Muney 2006). As a consequence, a gradient in health disparities exists by educational level. This section explores some of the educational policies in place to minimize disparities and pro- mote health.

Every child in the United States and Canada has a right to an education, up through the completion of high school. This social policy is one of the few guarantees given to residents of the United States. The majority of American and Canadian children attend a school that is in the same community in

which they reside with their family. When a school is community based, it can also serve as a commu- nity center, providing after-school programs for working parents and evening educational programs to community members. Schools can support and improve the lives of children and their families by serving community needs. The school system also functions as a social gatekeeper and may be held accountable for enforcing many public health laws and regulations, such as the requirement for vacci- nation before children enter the system.

Nurses, social workers, and psychologists in U.S. and Canadian schools are now well established as integral providers of services for children and families. Psychological testing and services, speech and language therapy, occupational therapy, and physical therapy are a legal right for all children as- sessed as having special health care or learning needs and are administered under such legislation at Section 504 of the Americans with Disabilities Act. In Canada, the provincial Ministry of Educa- tion is responsible for administering the public funds of children’s education (Canadian Encyclo- pedia, 2012).

Nevertheless, educational equity is not always easy to achieve, and educational inequity leads ultimately to health disparities. For example, the No Child Left Behind (NCLB) law was enacted in 2001 and was a reauthorization of the Elementary and Secondary Education Act originally adopted in 1965. This educational plan has four pillars: ac- countability, flexibility, proven methods, and parental ability to transfer their children out of low-performing schools after 2 years. On paper, the NCLB does not appear to hinder the educa- tional process, but there are many concerns about this law. The title of the law is intentionally inclu- sive and brings to mind equity in education, but when put into practice, equity was elusive among disabled students and students from ethnic and racial minorities (Thompson & Barnes, 2007, p. 12). The process of grading schools and requiring continuous improvement in test scores as a condi- tion of economic support may prove impossible to manage. Some schools starting with high scores may not be able to make substantial increases, and other schools starting with very low scores may make meaningful improvement without meeting the stated standards. In Canada too, recent cutbacks to education have resulted in curtailing some pro- grams considered “frills,” such as sports and music.

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They have met with public outcries from parents, often reversing the decision to cut back.

School Nursing The National Association of School Nurses (NASN) in the United States holds the position that each school nurse plays an active role in assist- ing children to optimize health, wellness, and development as a foundation to achieve educational success (NASN, 2003). This organization supports the need for a nurse in every school and acknowl- edges the role of the nurse that extends to family nursing, often the only health care resource in a community. As a resource, the school nurse should function as a case manager with knowledge of avail- able insurance programs, health care providers, and community-based health-related services.

Traditionally, the school nurse has been respon- sible for managing emergency situations, providing mandatory screenings and immunization surveil- lance, dispensing prescribed medications, and serv- ing as a resource for health-related information (American Academy of Pediatrics [AAP], 2001). The role of the school nurse, as part of a compre- hensive school-based health care team, has ex- panded into many communities as a source of health care for the uninsured. Many large cities employ registered nurses and advanced practice nurses who provide primary care services in school- based clinics, not only because children lack a source of care but because school-based care is accessible and comfortable for young people.

The AAP (2001) describes the role of the school nurse as one who provides care to children, includ- ing acute, chronic, episodic, and emergency care. The nurse is also responsible for the provision of health education and health counseling, and serves as the advocate for all students, including those with disabilities. The school nurse should work in collaboration with community-based doctors, or- ganizations, and insurers to ensure that each child has access to health care (AAP, 2001). This recom- mendation is an exceptional expectation, especially when many schools function without a full-time nurse. Far too many schools have no nurse, only a part-time nurse, or a nurse whose only role is to ensure that children with special health care needs receive their medications, catheter care, or other prescribed services.

In Canada, where all permanent residents have universal health coverage, most individuals and

families have a family physician and therefore better access to health care. School nursing falls under the purview of public health nurses who visit schools as part of their roles determined by various provincial government mandates. These nurses have an op- portunity to connect with children and families and mediate their needs and available resources and practice health promotion. They play an important role in primary health care with an emphasis on up- stream approaches of health promotion and disease prevention (Butterfield, 2002; Falk-Rafael & Betker, 2012; Smith Battle, 2012). Recently, with a push from governments to focus more strongly on the “three Rs” (reading, writing, and arithmetic) and increasing standardization and testing, time al- lotted for public health nurses to service the indi- vidual schools is being cut. School health today falls under a consensus statement of many public agen- cies, rather than nursing alone (Canadian Consen- sus Statement on Comprehensive School Health, 2007). In Ontario, for example, if specific nursing services are required today, the trend is to provide services by nurses attached to a Community Care Access Centre (CCAC), an agency that delivers nursing care in the community in general. These nurses are only looking after specific children with specific health care needs, which range from phys- ical problems to learning disabilities. Therefore, the coordinated health promotion aspect of school nursing is disappearing in Canada too.

The variability in the presence or expectations of school nurses is a source of concern in the United States. In some districts (and by law in some states), every school has full-time nurses with both knowledge and time to work with children and par- ents to support or improve physical or mental health. According to the NASN, schools that pro- vide “adequate nursing coverage” have lower dropout rates, higher test scores, and fewer ab- sences, which translate into better health outcomes for children and families. The U.S. government recommends one nurse for every 750 students as outlined in the Healthy People 2020 objectives, with adjustment depending on community and student needs (USDHHS, 2010). To date, only 45% of public schools have a school nurse all day every day, and an additional 30% have a nurse part-time in one or multiple schools (NASN, 2010).

School nurses are in a unique position to pro- vide many health-related services to school-age children and their families. Unfortunately, in

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many communities in both the United States and Canada, social policy and funding shortfalls are constricting these resources. If given the appropri- ate resources and backing, school nurses are well positioned to promote and facilitate family health and creatively bring needed services to schools such as can be seen in the establishment of school- based community health centers.

Housing and Poverty Reduction Policies The Canadian Centre for Policy Alternatives (CCPA, 2012) points to the lack of national policies on housing and poverty reduction, creating an urgent need for developing policies to mitigate in- come disparities, by (a) increasing minimum wages to a “living wage,” meaning a wage large enough to live comfortably with a healthy lifestyle; (b) in- creasing social support payments to allow for the necessities of life; and (c) a fairer system of taxation in which higher incomes are taxed progressively more. The public good should come before the in- dividual good in this vision based in principles of social justice and dignity (CCPA, 2012). Nurses should advocate for policies ensuring quality hous- ing, including subsidized housing for low-income families. Since Canada has no national housing policy, creating one seems to be of utmost priority.

Policy Related to Chronic Illness As discussed earlier in the chapter, chronic illness is both a social determinant of health for families and a creator of health disparities between families. A number of chronic health-related policies have been created that have the potential to reduce dis- parities in this area. This section explores several of these policies.

Asthma Policy The objective of policy makers now is to create “asthma-friendly communities.” These communi- ties would offer better access to and quality of treat- ment for all populations, but especially those in poorer communities; increased awareness of asthma and its risks; and environmentally safe schools and homes (Lara et al., 2002). New York City, for ex- ample, began an Asthma Initiative in 1999 that includes an Asthma Institute, a comprehensive pro- gram called Managing Asthma in Schools and Daycare, a Community Integrated Pest Management

program, and an Asthma Care Coordinator pro- gram that provides follow-up care and support to children hospitalized for asthma. The Asthma In- stitute provides free education to health care providers, community educators, and homeless shelter workers on asthma signs and symptoms, asthma self-management, and other clinical topics related to asthma. This initiative helped reduce hos- pitalizations for asthma by 9% in 2005 (New York City Department of Health and Mental Hygiene, 2008). No-smoking policies, legislation on emission controls for industries and car exhausts, and cleaner electricity generation initiatives also make a differ- ence in terms of asthma health.

HIV/AIDS Policy As discussed earlier, with the introduction of anti- retroviral drugs in the 1990s, HIV has been treated as a chronic illness, and people are living longer with the infection. Therefore, an increased need for nurses exists to offer prevention education and pro- mote testing for all men and women. Moreover, nurses should join the campaign to continue to encourage the safer-sex practices that helped to re- duce the rates of infection in the earlier days of the illness. As stated earlier, with the successful intro- duction of the antiretroviral drugs, safer-sex prac- tices have been relaxed and rates of infection are no longer decreasing. The CDC currently recom- mends routine screening and testing for all adults, adolescents, and pregnant women (CDC, 2006). It is believed that when a person infected with HIV is aware of his or her sero-status, he or she can live a healthy and long life by adopting healthy behaviors and using antiretroviral drugs. Knowing HIV status also helps to reduce transmission by practicing safer sex. Prevention education, screening, and counseling are priorities for the family nurse. Policies that prevent the spread of AIDS would also include sex education in schools and for the public at large.

Mental Illness Policy As a first step, Canada is about to introduce its first national mental health strategy (Mental Health Strategy of Canada, 2012). The Housing First pro- gram for individuals with mental illnesses who are homeless, which gets them into supportive housing without demanding that they first be treated, seems to have made a big difference to this vulnerable population, reducing the numbers of unhoused and

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sick individuals living on the street and in shelters (Mental Health Strategy of Canada, 2012).

Aging Population Policy Many chronic and debilitating illnesses in the elderly are preventable or can be delayed. Early adoption of a healthy lifestyle and prevention of obesity decreases the prevalence of illnesses such as diabetes, cardiovascular disease, pulmonary disease, and physical disabilities. Hence, it is important to create policies that promote health in an upstream approach before illness sets in, making healthy lifestyles affordable for all. This calls for policies to mitigate the root causes, such as poverty, unhealthy living conditions, food insecurity, lack of access to early interventions when ill, and all other relevant social determinants of health. For nurses it means, once again, advocating for their clients and helping them attain the necessary resources within the com- plicated systems of health care and social support.

Health Promotion Policies Health promotion generates health improvements through multiple approaches of research, public ed- ucation, changes in the physical and social environ- ment, regulation of disease- and injury-promoting activities or behaviors, and improved access to high- quality health care through policies that mitigate dis- parities and promote equity. For effective outcomes, these policies must consider the social determinants of health as the foundational concepts influencing health (Marmot, 1993; Mikkonen & Raphael, 2010). In 1990, at the urging of the Surgeon General of the United States, the U.S. federal government pub- lished a national agenda for health promotion, titled Healthy People 2000, which identified 319 objectives for health promotion and set measurable goals for achieving them. Many of the objectives for the decade dealt with health behaviors such as physical activity and exercise; tobacco, alcohol, and drug use; violent and abusive behaviors; safer sexual practices; and behaviors designed to prevent or mitigate injuries. These objectives were set as national goals to be realized through a combination of public sec- tor, private sector, community, and individual efforts (see National Center for Health Statistics [2011] for a complete list of objectives and an assessment of progress toward their achievement). The out- comes to date appear to be mixed, with considerable

success in some areas, including increases in moder- ate physical activity; moderate improvements in some others, including decreases in “binge drinking” and increases in safer sexual practices; and little progress in some other behavioral objectives, includ- ing marijuana use and tobacco use during pregnancy (National Center for Health Statistics, 2011). A new set of objectives and measurable goals were established in Healthy People 2010 and revised again in Healthy People 2020. The relevant Healthy People goals provide a standardized approach to assess changes in behaviors that determine health out- comes. Numerous tables in the statistical yearbooks published by the National Center for Health Statis- tics form a “scorecard” for this national health pro- motion effort.

Ensuring access to health and illness care services is one way to improve the health of individuals and families. Using upstream approaches, children should receive necessary immunizations and should be evaluated on a regular basis for normal growth and development. Likewise, it is important that adults be adequately immunized and screened for hypertension, diabetes, and cancer at appropriate ages and intervals. The absence of a comprehensive commitment to access or assurance of universal health insurance coverage for all, until now, has made achieving the desired level of interaction with health professionals extremely difficult in the United States (Bernstein, Gould, & Mishel, 2007). Commu- nity health centers (CHCs), offering a wide range of services, could hold possibilities for more coordi- nated care in the United States, as well as in Canada.

Although much emphasis has been on the roles parents have in ensuring that their children receive needed services, many adults also have responsibil- ities for the health care of aging parents. Adults with both children and aging parents dependent for support struggle with access to health care and management of illnesses, and therefore experience a particularly difficult burden in today’s world. They are referred to as the sandwich generation and are in danger of caregiver burnout (Drew, 2012). Adequate supports for families are needed so they do not have to shoulder the burden of care alone. Suggestions for promising approaches are health coaches, particularly registered nurses (RNs), who develop a trusting relationship with their clients and act as advisors and resources for the clients. The RN–Health Coach was recently introduced in the United States with good results

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and is currently piloted in Canada as well (Change Foundation, 2013).

Areas in Need of Additional Social Policy to Avoid Growing Disparities There are a number of areas in particular need of additional social policy to help stem growing disparities.

Elder Care The Administration on Aging (USDHHS, 2012) predicts that by 2020, 19.2% of the 15.2 million persons older than 65 living alone will need help with daily living. The provision of care to the eld- erly is growing both as a family responsibility and as a profession. More women are caregivers than men. Policies such as the Family and Medical Leave Act are written as gender neutral, but women experience a general expectation that they will be the caregivers regardless of the burden that places on them. Lay caregivers are unpaid, which benefits social programs, especially Medicare and Medicaid. Home care in Canada is also poorly funded and benefits enormously from free labor by family members. Women who pro- vide lay home health care experience much greater levels of stress than their other family members, as well as more alienation from those outside of the home (Armstrong, 1996). Respite care and increased home health nursing and other supports are needed here to ease the burden (Bookman, Harrington, Pass, & Reisner, 2007; Change Foundation, 2013). Recently, some parts of Canada introduced compassionate care bene- fits, which apply when the death of a family mem- ber is expected within the next 6 months. A family caregiver can be granted up to 6 weeks leave from work, during which time she receives Employment Insurance benefits (Employment Insurance Compassionate Care Benefits, 2013). Day care for elders and increasing funding for community-based care in the home would make it easier for older people to stay out of costly in- stitutional care and increase their quality of life. This type of care needs to include house calls by doctors, nurses, physical therapists, and other health care professionals if clients are unable to go to appointments. It also needs to focus on home safety (Change Foundation, 2013). It could go a long way toward reducing health disparities

imposed by chronic illness by providing access to optimal care for vulnerable older persons.

Women’s Reproduction Women’s reproduction is another area where social policy could help stem health disparities. In 2006, for example, the state of South Dakota banned access to abortion services. This ban was seen as a direct chal- lenge to federal precedent set in Roe v. Wade. In South Dakota, it is now a felony for a health care provider to perform an abortion unless there is proof that the mother’s life is at risk. At the time of the ban, only one provider of abortion services, Planned Par- enthood, operated in the state. The clinic was reliant on physicians who would fly in from other states be- cause no local physician was willing to provide abor- tions to women. As a result of this law, women do not have access to abortions unless they have the re- sources to leave the state for care. In Canada, in the small province of Prince Edward Island, many doc- tors have refused to perform abortions, which forces women to seek them outside of the province, even though it is a legalized procedure there.

On a similar note, some pharmacists across both countries have refused to fill prescriptions for con- traceptives, including emergency contraception, stating that doing so is in direct conflict with their moral and personal beliefs (Stein, 2005). Women, who are often unaware of these reproductive health issues until they are directly affected, are outraged when pharmacists’ beliefs override their right to services. Women have a legal right to access pre- scription medications. The question is, whose rights prevail? In Canada, religious-based health care in- stitutions, as well as individuals, can also refuse abortions and birth control counseling, although women have the right to these services under the Canadian Charter of Rights and Freedoms. Those who are refusing to provide the services are legally required to refer the women to another practitioner who is willing to perform the service. In underser- viced areas, this might mean traveling long dis- tances, which not all women can afford.

In the United States, according to the Guttmacher Institute (2005), 47 states have a policy that allows health care providers, including nurses and pharmacists, to refuse to participate in the delivery of reproductive health services, which could leave many women with no choice regard- ing their reproductive health. Once again, gender, socioeconomic position, and geography seem to

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be determinants of health that disproportionately disadvantage women by denying them access to care. Both countries are in need of social policy to help mitigate these disparities.

LGBT Health Disparities Arguably one of the most significant areas of cur- rent relevance to family health in North America relates to families with nonheterosexual or gender- conforming identities. Lesbian, gay, bisexual, and transgendered (LGBT) families characterize a growing number of households in the United States (U.S. Census Bureau, 2011). Some estimates from these data suggest that there has been as much as a 51.8% increase in the number of formal same-sex households from the previous decade, though the prevalence in the overall population is still quite small at approximately 1% of U.S. households. The majority of these households, approximately 81%, do house children (U.S. Census Bureau, 2011). This prevalence is significant because with the defi- nition of family currently in flux, these couples and parents face a number of challenges with insurance access, financial benefits and death plan- ning, decision-making abilities, and other key social policy related family health challenges. In Canada, where same-sex marriages are legalized, same-sex marriages have all the rights, duties, and privileges that come with being a married couple. Neverthe- less, the stigma associated with homosexuality re- mains in varying degrees, so the issues cited below in both countries are similar.

According to data presented by the Healthy People 2020 initiative, LGBT individuals face a number of specific health disparities, such as stigma and discrimination-related mental health disorders, and increased rates of suicide and substance abuse (USDHHS, 2013b). As a result of systemic and policy-related stigma and barriers, these individuals experience significant differences in health-seeking and health-promoting behaviors: they are far more likely to delay accessing health care; they are less likely to receive preventive screens such as mam- mograms; and they experience greater alcohol and tobacco use, as well as physical violence, than their heterosexual counterparts (Krehely, 2009). Fami- lies with LGBT youth are particularly vulnerable and experience significant family life challenges re- lated to stigma and acceptance. As such, LGBT adolescents experience much higher rates of home- lessness, prostitution, and substance use, and they

are at increased risk of infectious diseases such as HIV, hepatitis, and a host of sexually transmitted infections (Ryan, Huebner, Diaz, & Sanchez, 2009). Both the United States and Canada need additional social policies to decrease these disparities.

To combat these individual and family health problems, San Francisco State University com- pleted a significant family-based intervention project to assist families to develop skills and at- tributes of acceptance, particularly among fami- lies with high degrees of religiosity (Ryan, Russell, Huebner, Diaz, & Sanchez, 2010). Their Family Acceptance Project provides an entire evidence- based family intervention plan and resources available to the general public, along with links to peer-reviewed research aimed to assist families, that can be accessed at http://familyproject.sfsu. edu. Efforts such as these, aimed at assisting fam- ilies at the individual and community level, in combination with systems of health research, provide an important link between social policy development and LGBT individual and family health issues.

THE NURSE’S ROLE IN ADVOCACY FOR SOCIAL POLICY

This section will look at the role of the nurse his- torically and today in advocating for social policies to promote the health of clients and families, par- ticularly those who are disadvantaged. As holistic care providers, nurses are in an excellent position to inform the public, including politicians, about what policies are needed and why, and to negotiate for, and help clients and families obtain, the best possible resources.

Historical Involvement in Social Policy Historically, nurses have worked closely with vul- nerable populations and developed unique solu- tions to challenging health care problems. Many of these interventions took place in the community setting and focused on the family, not just the in- dividual. The profession of nursing historically has been involved in social issues and has worked tire- lessly to advocate and provide a voice to many vulnerable populations, starting with the Grey nuns in the 18th century in Canada. The Grey nuns were Catholic, religious sisters who established

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themselves in the city of Montreal. Their mission was to care for the poor and destitute (Hardill, 2006). In England, in the mid-19th century, Flo- rence Nightingale began to reform the Poor Houses of London and stressed the importance of the environment in health care (Hardill, 2006; Monteiro, 1985). The Henry Street Settlement (HSS) in New York City, founded by Lillian Wald, likewise demonstrated nursing’s role as an advocate for vulnerable populations. Founded in the late 19th century, the mission of the HSS was to pro- vide “health teaching and hygiene to immigrant women” (Henry Street Settlement, 2004). Today, the HSS continues to function as a community cen- ter for families in New York through its midwifery and nurse practitioner program. Mary Breckin- ridge established the Frontier Nursing Service (FNS) in Hyden, Kentucky, in 1925. The FNS in- troduced community-based midwifery care to the women of Appalachia, a vulnerable population with distinct health care needs. These nurses were serv- ing the needs of women and vulnerable minority populations who, at the time, had no human rights, such as voting or owning property.

In the early 20th century, as nursing care moved into the hospital setting, the role of the nurse changed. Nurses lost their autonomous practice as healers and became subordinated to physicians (Ashley & Wolf, 1997). Care became increasingly centered on the medical model and focused on cur- ing the sick individual as opposed to caring for the human response to illness in the context of the physical and social environments. Assessing the in- fluence of the determinants of health and evaluat- ing their effects on the overall health of the individual and family lost much of its importance, as care delivery became focused on the individual’s medical diagnosis.

Nursing Today Today most front-line nurses in the United States and Canada function primarily in the acute care setting, a practice that breeds an inadequate per- spective on the role of the social determinants of health and an associated limitation in advocacy. This limited involvement, however, will be forced to change with the looming transformation of health care through the Affordable Care Act in the United States and talk on both sides of the border to move care from institutions into the community.

In 2011, the IOM released a report outlining key recommendations for preparing the nursing work- force to meet the needs of the population: The Future of Nursing: Leading Change, Advancing Health. This landmark report describes the need to harness the power of nurses to realize the ob- jectives set forth in the Affordable Care Act by transforming the health care system from one that focuses on the provision of acute care services to one that delivers health care where and when it is needed, ensuring access to high-quality preventive care in the community. The IOM committee ex- plains that nurses will need to be full partners in redesigning efforts, to be accountable for their own contributions to delivering high-quality care, and to work collaboratively with leaders from other health professions by taking responsibility for identifying problems, devising and implement- ing solutions to those problems, and tracking im- provements over time to ensure the health of the population (IOM, 2011).

Numbering over 3 million in the United States and just over 250,000 in Canada, RNs comprise the largest segment of the U.S. and Canadian health care workforce and must be active leaders in improving the access to and quality of health care. Advancing health care will require a cultural shift in the expectations of the nursing profession regarding education, practice, and advocacy for vulnerable populations. In Canada, Pilkington, et al. (2011) found that, even in community-based health care centers, many nurses failed to take into account the clients’ social and housing con- ditions, as these concepts were not included in the standard nursing assessment forms. The allotted time spent with clients was mostly focused on traditional health teaching about lifestyle changes, despite the fact that these same nurses indicated that assessment of access to necessary resources was a critically important component for success in meeting clients’ needs promoting their health (Ministry of Community and Social Services, 2012).

Although nurses today may have difficulty mak- ing the link between clinical practice and social policy, nursing leaders are pressing for greater involvement in such efforts. On a professional level, many nursing organizations advocate for vul- nerable populations and attempt to solve health disparity issues. In fact, in 1992 the American Nurses Association moved the national office to

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Washington, DC, to increase visibility of the pro- fession of nursing among U.S. legislators (Milstead, 1999). Similarly, the Canadian Nurses Association (CNA) and provincial professional associations, such as the Registered Nurses Association of On- tario (RNAO) (2012), play an increasingly stronger advisory role, advocating with the federal and provincial governments regarding health policies.

Most nurses currently may not possess the knowledge and skills to interact with policy makers, an activity that must be learned if the needs of the population are to be met. Although few studies exist to describe this complex topic, undergraduate students report limited knowledge of how to en- gage in a dialogue with legislators or how the role of the nurse relates to such activity (Schofield, 2007). Hewison (2007) acknowledges the lack of policy involvement among nurses and concludes that this may be related to the complexity of the policy process. In Canada too there is very little focus on policy in nursing education. This lack of preparation in policy development is due in part to the traditional focus of curriculum to be foremost on the competencies necessary to obtain licensure. Another reason contributing to this omission in nursing education is the biomedical institutional focus associated with nursing, even in community settings. Advocacy work is mostly not recognized as part of the nursing job description or scope of responsibility (Pilkington et al., 2011).

Brewah (2009) recommends integrating advo- cacy into nursing curricula and staff education. Primomo (2007) studied the influence of an edu- cational intervention on political awareness in a group of graduate nursing students and found that perceived competence among the students in- creased after the intervention. Hewison (2007) de- scribes an organized method for policy analysis to be used by nurse managers. This method involves a process by which a summary of the policy is de- veloped, including its origin and status, a history and link to other policy initiatives, and, finally, themes and elements of nursing practice affected by the policy. Once the analysis is concluded, the nurse can take a position on whether this policy will meet the needs of the constituency. Nurses with strong policy analysis skills are critical to improving health for all citizens and to closing the health disparities gap.

Professional nurses with an interest in learning more about their role in the policy arena can find

resources through professional associations or can enroll in a health care policy course. One example is the Washington Health Policy Institute con- ducted by George Mason University in Arlington, Virginia. Nurses and other health care professionals spend 1 week learning about health and social pol- icy, strategies to advocate for at-risk populations, and how to influence policy makers. Similarly, in Canada, the CNA and provincial associations such as the RNAO also offer information, workshops, and training for nurses to gain skill in health care policy development. Social policies are a major contributing factor to the mitigation of health dis- parities. Nurses have the ability to influence policy on many levels, but not all policies are focused on interactions with governments.

Nursing Policy, Research, and Education Many important policies are at the institutional level, where nurses work; nursing practice, research, and education should reflect this orientation.

Nurses Influencing Social Policy The implications of becoming involved in the in- fluence of social policy as a context for nursing care of families are limitless, especially in commu- nity and institutional settings. Nurse involvement in policy development can constitute a wide range of activities, from a micro level, where nurses can inform institutional policies in the workplace, to a macro level, where nurses may petition govern- ment representatives regarding development of needed or modification of harmful policies.

Nurses can influence policy in small ways. Be- ginning by using open-ended questions that do not assume marital status, gender of partner, relation- ships with children, and sources of financial sup- port will yield a much more complete assessment. Discharge planning for return to the community should begin with an open exploration of potential support and resources, without assuming that any are automatically available. Here are some ways in which nurses can get involved in influencing policy from micro to macro levels:

■ Join committees in your institution to change relevant policies (e.g., include questions regarding available resources in assessment forms; make sure needed resources are

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available before discharge; ensure follow-up after discharge/referrals)

■ Join professional association and advocate for needed social policies

■ Write to or phone elected representatives regarding needed policies or changes to those that are harmful

■ Join community advocacy groups, such as those requesting affordable day care

■ Join boards of directors for agencies, such as social housing, CHCs

Nursing Research Nursing research has already developed useful tools and frameworks for providing nursing care across cultural barriers and under difficult circumstances. The recent development of community-based par- ticipatory research models (Minkler & Wallerstein, 2008) provides a methodology for studies more re- spectful of the potentially diverse views of family in a community. This approach requires the nurse researcher to establish a relationship with the com- munity in which the study is to occur before the de- velopment of the research question. Sharing all stages of the research process with the members of the community, nurse scientists using this collabo- rative approach to examining health disparities can directly affect community improvement based on the results of the study. Adopting this level of respect for reshaping nursing studies of “family” helps nurses gain a more complete understanding of health care for all types of families. This approach is particularly important as trends in care move away from acute care institutions toward community- based care delivery provided by CHCs and home care delivery in both the United States and Canada. Nurses will be particularly well positioned to partic- ipate in policy changes and program development in collaboration with an interdisciplinary team, includ- ing their clients and families, providing comprehen- sive health care where and when the community needs it (Hankivsky & Christoffersen, 2008).

Nursing Education As discussed earlier, there is currently very little inclusion of policy development and advocacy work in nursing curricula. Opportunities for learning experiences in settings that have established serv- ices for vulnerable populations provide the nursing student with clinical situations in which to practice

assumption-free assessment skills and learn about diverse life situations and needs. Homeless shelters, services for gay and lesbian adolescents, shelters for victims of intimate partner abuse, outreach centers for sex workers, and street syringe and needle ex- change programs all reach a disproportionate share of individuals whose family experiences are not the idealized norm (Hunt, 2007). Working in coalition with clients and other health care providers, nurses can ensure the maximum beneficial influence of such policies on the needs of families, communities, and society (Bergan & While, 2012; Brewah, 2009).

The inclusion of health policy in nursing educa- tion has the potential to increase the sensitivity of nurses to social and health policy issues. Policy in- volvement is about empowering others through leadership, not exerting power over others (Brewah, 2009). Nurses must understand that it is not suffi- cient to provide care in isolation from the forces that increase risk for disease or limit access to medical services. Electives in history, economics, and politi- cal science inform nurses’ understanding of policy. The IOM recommends that nurses engage in life- long learning, thereby speaking to the need for nurses to engage in professional practice that strives to stay current on the state of the science in health care and the influences of public policy on the de- livery of that health care (IOM, 2011). Nurses, at all levels, must be able to understand current affairs, join nursing and other advocacy organizations, and participate in local, state/provincial, or national po- litical processes. Nurses should be educated to take on responsibility of advocating for equity and social justice to help develop family-friendly policies.

SUMMARY

This chapter has focused on health disparities and how they can be mitigated by social policies. As nursing care shifts from institutions into the com- munity, nurses wanting to deliver the most effective care need to return to historical role models in nurs- ing. They need to become knowledgeable about the influence of the political social structures that are facilitating or hindering health promotion and par- ticularly affect those families who are vulnerable. Promoting health and mitigating disparities, nurses have to be aware of and keep in mind the following:

■ Health disparities arise from complex, deeply rooted social issues.

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■ Health disparities are directly related to the social and political structure of a society, which gives rise to the determinants of health.

■ The social determinants of health include poverty, housing, education, employment and food security, accessibility to health care, presence of chronic illness, gender, and being of an ethnic, racial, or sexual minority.

■ All these social determinants of health intersect and mutually reinforce each other.

■ The social determinants are the root causes of illness and health, as they affect lifestyle possibilities and limitations and access to health care resources.

■ The policy decisions made by a society or government about families and what consti- tutes a legal relationship, and how health care is delivered, have a profound effect on families and their health.

■ In the past, the profession of nursing had a well-defined role in advocating for vulnera- ble populations. In the last century, nursing involvement in the development of health policy has declined, due to a focus on medical diagnosis rather than whole individuals and families in their environmental and social contexts.

■ Nurses today need again to get involved in policy development at institutional and societal levels to promote health and well-being for families.

■ Nursing professionals can benefit from theo- retical and practical education about social policy issues that are broad and complex, but result in resounding effects on the health of a family.

■ Family nursing practice has the potential to improve the health of all families, regardless of definition and composition, by closely col- laborating with clients and interdisciplinary health care teams.

■ Nursing education needs to include teaching policy development and advocacy.

■ Nursing research should include collabora- tive, community-based participatory research with families for best meeting their needs, as they are the experts of their own lives.

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U N I T

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167

Relational Nursing and Family Nursing in Canada

c h a p t e r 6

Colleen Varcoe, PhD, RN

Gweneth Hartrick Doane, PhD, RN

C r i t i c a l C o n c e p t s

■ Relational inquiry rests in a socio-environmental understanding of health and health promotion (World Health Organi- zation, 1986). A socio-environmental understanding of health incorporates sociological and environmental aspects, as well as medical and lifestyle choices. Thus, a person’s/family’s capacity to define, analyze, and act on concerns in one’s life and living conditions joins treatment and prevention as an essential goal of family nursing practice.

■ Families, health, and family nursing are understood to be shaped by the historical, geographical, economic, political, and social diversity of the particular person’s/family’s context. By purposefully working with this diversity when provid- ing care, nurses are prepared to take into account the contextual nature of people’s/families’ health and illness expe- riences, and how their lives are shaped by their intrapersonal, interpersonal, and contextual circumstances to provide more appropriate care.

■ “Context” is not something outside or separate from people; rather, contextual elements (e.g., socioeconomic circumstances, family and cultural histories) are literally embodied in people and within their actions and responses to particular situations.

■ Similar to other Western countries, Canada is prosperous, but has a significant and growing gap between rich and poor, along with a biomedical- and corporate-oriented health care system. These influences shape Canadians’ health, experiences of family, and experiences of health care and nursing care. By understanding how these economic and political influences shape family experiences and nursing situations, nurses can promote health more effectively.

■ Dominant expectations and discourses about families in Canada are similar to other Western countries. These expec- tations and discourses shape Canadians’ health, their experiences of family, and their experiences of health care and nursing care. By examining how families and nurses themselves draw on these expectations and discourses, nurses can improve their responsiveness to families.

■ Multiculturalism is part of Canada’s national identity and is enshrined in Canadian state policy. Multiculturalism is understood in Canada to promote equality and tolerance for diversity, especially as it relates to linguistic, ethnic, and religious diversity. Tensions exist between this understanding and the lived experiences of families, however, particu- larly those who are racialized, do not have French or English as their first language, and are from nondominant religions. Racialization refers to the social process by which people are labeled according to particular physical

(continued)

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Relational inquiry, the process of understanding and assessing the importance of relationships in order to support optimal health, is a valuable ap- proach to family nursing. This approach rests in a socio-environmental understanding of health and health promotion (World Health Organization, 1986). This understanding of health incorporates sociological and environmental aspects, as well as medical and lifestyle (behavioral) ones. From this perspective, health is considered to be “a resource for living . . . a positive concept . . . the extent to which an individual or group is able to realize as- pirations, to satisfy needs, and to change or cope with the environment” (World Health Organiza- tion, 1986, p. 1). Subsequently, promoting health and the capacity of people/families to define, ana- lyze, and act on their concerns is the central goal of family nursing practice.

Relational inquiry family nursing practice is oriented toward enhancing the capacity and power of people/families to live a meaningful life (meaningful from their own perspective). Although this may involve treating and preventing disease or modifying lifestyle factors, the primary focus is to enhance peoples’ well-being, as well as their capacity and resources for meaningful life expe- riences. Thus, relational inquiry focuses very specifically on how health is a socio-relational expe- rience that is strongly shaped by contextual factors.

Understanding and working directly with context provides a key resource and strategy for responsive, health-promoting family nursing practice. Having an appreciation for the range of diverse experiences and how the dynamics of geography, history, poli- tics, and economics shape those experiences allows nurses to provide more effective care to particular families, better understand the stresses and chal- lenges families face, and better support families to draw on their own capacities. Developing such an appreciation requires that nurses consider how the varied circumstances of their own lives shape their understanding.

Grounded in a relational inquiry approach, this chapter focuses on the significance of context in family nursing practice. Specifically, we highlight the interface of socio-political, historical, geo- graphical, and economic elements in shaping the health and illness experiences of families in Canada and the implications for family nursing practice. This chapter begins by discussing why consideration of context is integral to family nurs- ing. The chapter then covers some of the key characteristics of Canadian society, and how those characteristics shape health, families, health care, and family nursing. Finally, informed by a rela- tional inquiry approach to family nursing, the chapter turns to the ways nurses might practice more responsively and effectively based on this understanding.

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C r i t i c a l C o n c e p t s ( c o n t . )

characteristics or arbitrary ethnic or racial categories, and then dealt with in accordance with beliefs related to those labels (Henry, Tator, & Mattis, 2009). Nurses who understand these tensions and how they shape families and experiences are better prepared to provide responsive nursing care.

■ As a colonial country, Canada has an evolving history of oppressive and genocidal practices against Canada’s indige- nous people, and an evolving history of varied immigration practices. Understanding how migration and colonization affect both indigenous and newcomer families, and the health and lives of people within those families, is funda- mental to providing effective family nursing care.

■ Competent, safe, and ethical family nursing involves taking the intrapersonal, interpersonal, and contextual aspects of families’ lives into account. Nurses also need to consider how their own contexts shape their understandings and responses to particular families and situations. Together, these actions enable nurses to tailor their understanding and care to the specific circumstances of families’ lives and mitigate the possibility of making erroneous assumptions about the families they serve.

■ Without a careful consideration of context and its influence on families’ health and illness experiences, nurses typically draw uncritically on stereotypes in ways that limit possibilities for families they serve. By inquiring into the context of families’ and nurses’ own lives, nurses are able to provide responsive, ethical, and appropriate care.

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CONTEXT IS INTEGRAL TO FAMILY NURSING

Whereas “context” is often conceptualized as a sort of container of people, something that sur- rounds people but is somewhat distinct and sepa- rate from people, this chapter encourages readers to think of context as something that is integral to the lives of people, as something that shapes not only people’s external circumstances and opportu- nities but their physiology at the cellular level. In other words, context is embodied. For example, if a person is born into a middle-class, English- speaking, Euro-Canadian family, the very way that person speaks—accent, intonation, vocabulary—is shaped by that context. The way that person’s body grows is influenced by the nutritional value of the food and quality of water available, the level of stress in the family, the quality of housing the family has, the opportunities for rest and physical activity. Similarly, the person’s sense of self and expectations for her life are shaped by the circum- stances into which the person is born. The indi- vidual’s success in education will depend not only on what educational opportunities are available, but on how the person comes to that education— for example, how well fed or hungry, well rested or tired, or confident and content he is—and the economic resources available that shape which school the person attends. It will also be affected by how education is valued within the person’s family or community. Thus, a person’s/family’s multiple contexts cannot be “left” or understood as being outside or separate from one’s self or necessarily under one’s control. Rather, people/ families embody their circumstances, and their cir- cumstances embody them. Although they have some influence over their circumstances, such in- fluence generally is more limited than we would like to imagine. Moreover, the contextual ele- ments, and the experiences to which those ele- ments give rise, live on in people. That is, past contexts go forward within people, shaping how they experience present and future situations.

People are both influenced by their context and live within contexts. Throughout nursing careers, nurses provide care in specific contexts, and fami- lies will live in their own diverse contexts. Con- sciously considering the interface of these differing contexts and how they are shaping families’ health

and illness experiences is vital to providing respon- sive, health-promoting care. Also foundational to this process is the need to inquire into how “con- text” is shaping your own life and practice as a nurse. This enables you to choose more intention- ally how to draw on those influences to enhance your responsiveness to families. For example, many nurses practice in health care settings, surrounded by well-educated and financially stable profession- als. This context contrasts with many clients, who may lack education and live in low-income and un- stable housing due to financial instability. When a nurse recognizes this difference, care includes sen- sitivity to the disparity between these two contexts.

CANADA IN CONTEXT

Canada is diverse in multiple ways. This section considers five key areas of diversity that are signifi- cant to families and family nursing: geographical, economic, ethnocultural, linguistic, and religious diversity. These contextual elements overlap and intersect, shaping health, experiences of family, and experiences of health care and nursing.

Geographical Diversity Canada’s varied geography, encompassing differ- ing terrains and climates, and ranging from dense urban settings to sparsely populated remote rural areas, shapes Canadian life. Across the prairies, the various coastal regions, the remote areas of the north, and the different mountain ranges are var- ied resources and climatic conditions that shape the lives of Canadians in differing ways. The pop- ulation of Canada is concentrated primarily in urban centers in the south. In 2011, Statistics Canada reported that less than 20% of Canadians (about 6.5 million people) were living in rural areas (areas located outside urban centers and that have a population of 10,000 or more people). A continuing trend exists toward urbanization as more people move from less to more urban set- tings. In 2011, more than 27 million Canadians (81%) lived in urban areas, a reversal from over a century ago. The three largest urban areas in Canada—Toronto, Vancouver, and Montréal— made up just over one-third (35%) of Canada’s entire population in 2011 (Human Resources and Social Development Canada, 2012).

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Geographical differences influence other as- pects of life. For example, incomes in rural settings are lower than in urban settings (Canadian Popu- lation Health Initiative, 2006), and health indica- tors are generally poorer in rural settings. In 2001, a lower proportion of Canadians living in small towns, rural regions, and northern regions rated their health as “excellent” compared with the national average and had a greater prevalence of being overweight and smoking (Mitura & Bollman, 2003; Williams & Kulig, 2012). People living in northern regions had greater unmet health care needs compared with the national average, whereas people in major urban regions had lower unmet health care needs. Life expectancy is lower and mortality rates are greater, particularly from diabetes, injuries, suicide, and respiratory disease, in rural settings compared with urban settings (Canadian Population Health Initiative, 2006; Williams & Kulig, 2012).

Geographical diversity shapes health through multiple pathways, including different access to food, housing, and other health resources; the kinds of employment available; environmental con- ditions and hazards; and social patterns. The health disparities across geographical areas continue to be a challenge to the quality of nursing care. Rural areas of Canada, in particular, lack sufficient num- bers of nurses to meet the complex needs of rural and poor clients (Williams & Kulig, 2012). Family nursing is challenged by the distance between clients, the difficulty clients have in reaching health care centers, and the lack of resources needed to provide quality care. Nurses are often faced with having to provide care in a shortened amount of time with fewer resources. Yet, if nurses recognize these challenges, they can work on a micro level to incorporate relational inquiry into even the briefest contact, asking family members how they support healthy living patterns, and at a macro level by being advocates for improved rural health.

Economic Diversity Although Canada is a wealthy, developed nation, a large and steadily widening income gap exists be- tween rich and poor (Conference Board of Canada, 2012; Statistics Canada, 2006), with many Canadi- ans living in poverty. Statistics Canada estimated that in 2009, nearly 3.2 million Canadians, or 9.6% of the population, lived in low-income families

(Statistics Canada, 2011b). About 634,000 children age 17 or under, or 9.5%, lived in low-income fam- ilies in 2009. About 196,000 of these children, or 31%, lived in a lone-parent family headed by a woman. Roughly 22% of children living with a sin- gle mother were in low-income households in 2009. Among 29 of the “richest countries” in the world, Canada’s child poverty rate is about midway between those with the lowest child poverty rates (less than 5% in the Netherlands) and those with the highest, with over 15% in Greece, the United States, Lithuania, Latvia, and Romania (UNICEF Office of Research, 2013).

The economic prosperity of Canada is dispro- portionately distributed, and the inequities be- tween those who are wealthy and those who are poor, and between those who are healthy and those who are not, continue to grow (Coburn, 2010). For example, a study analyzing the Canadian Commu- nity Health Survey found that, compared with white people, minorities were more likely to earn less than $30,000 Canadian per year (Quan et al., 2006). A study of Aboriginal people in urban set- tings found that approximately 30% of Aboriginal households are headed by a lone parent compared with 13.4% for non-Aboriginal households in the same communities (Canada Mortgage and Hous- ing Corporation, 2006). More than 50% of urban Aboriginal children in the Prairie and Territories Regions live in single-parent households versus 17% to 19% for non-Aboriginal children. Of those Aboriginal single-headed households, 43% lived in poverty compared with 28% of non-Aboriginal single-headed households (Collin & Jensen, 2009). This information is critical because income is a key determinant of health, affecting multiple dimen- sions of well-being. People who are racialized, are new immigrants, live in rural settings, and have dis- abilities are more likely to be poor, and are there- fore more affected by the health consequences of poverty. For example, the 2011 Child Poverty Report Card (First Call, 2011) reports that despite an over- all national “child poverty” rate of about 9.5%, par- ticular groups are at greater risk for poor health outcomes, including children of recent immigrants (42%), Aboriginal children (36%), children of lone female parents (33%), and children with disabilities (27%). The reported measured poor outcomes, in- cluding health, education, and long-term employ- ment achievement. A review of these outcomes from the Canadian Child Welfare Research Portal

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(Boer, Rothwell, & Lee, 2013) indicated that those individuals in poverty, especially during the first 3 years of life, had lower developmental skills, had poorer reading skills during school age, and were more likely to be unemployed or underemployed as adults.

Ethnocultural Diversity Canada is one of the most ethnically diverse coun- tries in the world, and the ethnic diversity of the Canadian population is increasing (Statistics Canada, 2009). More than 200 different ethnic origins were reported in the 2006 Canadian Cen- sus (Human Resource and Development Canada, 2012). In 2006, nearly 2 million people, or 6.3% of the total population, were immigrants who had arrived during the previous 10 years. In 2006, there were 1,172,785 Aboriginal people in Canada, comprising 3.8% of the Canadian popu- lation. Of the three Aboriginal groups, First Na- tions people (698,025) had the largest population, followed by Métis (389,780), and Inuit people (50,480).

(58.3%), whereas only 16.1% of immigrants came from European countries (Human Resource and Development Canada, 2012).

Although Canada has official state policy that advocates equality and promotes tolerance through multiculturalism, many argue that the rhetoric of multiculturalism masks inequities and discrimination based on ethnicity and racism (Thobani, 2007). The Ethnicity Diversity Survey (Statistics Canada, 2003a) found that 2.2 million people, or 10%, reported that they felt uncom- fortable or out of place sometimes, most of the time, or all of the time because of their ethnocul- tural characteristics. Those people who were identified as “visible minorities” were most likely to feel out of place. Recently a large study found that many newcomer children and youth feel mis- treated and isolated by both peers and teachers (Oxman-Martinez et al., 2012). Henry et al. (2009) argue that in Canada a form of racism is practiced wherein policies and rhetoric simulta- neously promote equity and justice and tolerate widespread discrimination.

Racism has significant health effects (Harris et al., 2006). Discrimination based on race has been linked with health outcomes such as hypertension and other chronic diseases (Krieger, Chen, Coull, & Selby, 2005), mental health problems such as depression and suicide (Borrell, Kiefe, Williams, Diez-Roux, & Gordon-Larsen, 2006; McGill, 2008), and low birth weight (Mustillo et al., 2004). For example, Veenstra’s (2009) analysis of the Canadian Community Health Survey found signif- icant relative risks for poor health for people iden- tifying as Aboriginal, Aboriginal/White, Black, Chinese, or South Asian that were not explained by socioeconomic status, gender, age, immigrant status, or location, suggesting that experiences with institutional and everyday racism and discrimina- tion play an important role.

Changing immigration patterns and increasing ethnic diversity coupled with discriminatory poli- cies and attitudes influence families’ experiences and health. Migration processes are stressful, and this stress is intensified when combined with lan- guage barriers and downward economic mobility (Papademetriou, Somerville, & Sumption, 2009). These factors, combined with a gap between health care providers’ lack of understanding of cultural differences and clients’ lack of understanding of cultural health practices in Canada, add to the risks

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Approximately 250,000 people immigrate to Canada annually. Of the more than 13.4 million immigrants who came to Canada during the 20th century, the largest number arrived during the 1990s. The 2006 census showed that one in five (19.8% of the total population) Canadians were foreign born, the highest proportion since the 1930s (Statistics Canada, 2009). The origins of im- migrants to Canada have changed in recent decades, with increasing numbers coming from non-European countries. Between 2001 and 2006, the majority of immigrants arrived from Asia

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for poor health care. Nurses are key in minimizing these risks by continually striving to assess and un- derstand cultural differences and assisting families in understanding Canadian health care practices. Nurses can also be advocates for families by assisting family members in protecting important cultural practices in an unfamiliar health care setting.

Linguistic Diversity Consistent with its history as a colonial nation and destination for immigrants from around the globe, Canada is linguistically diverse. The 2011 Census recorded more than 60 Aboriginal languages, grouped into 12 distinct language families, and more than 213,000 people reported an Aboriginal mother tongue. Most Canadians speak one or both of the official languages: French and English. Yet, in 2011, about one of every five people reported having a mother tongue other than English or French (Statistics Canada, 2012). Of these, one- third reported that the only language they spoke at home was a language other than English or French, that is, a nonofficial language. Over the past few decades, language groups from Asia and the Middle East increased in number, and Chinese is now the third largest language group after English and French.

Language affects health in many ways. First, be- cause language is connected to identity, language loss is related to the loss of cultural identity expe- rienced in an ongoing manner by Aboriginal peo- ples and immigrants to Canada. When individuals and families lose their cultural identity, they are at risk of increased isolation and depression. This out- come threatens not only their desire and ability to seek health care, but also increases their risk for secondary poor mental health outcomes. Second, language barriers profoundly affect access to re- sources, including employment, social, and health resources. Finally, language barriers can be direct barriers when receiving health care and communi- cating with health care providers.

Some people who speak the dominant languages of Canada presume that everyone should learn French or English, without considering the re- sources it requires to do so and the barriers (such as poverty, transportation, discrimination, ability) to doing so. Very limited supports are available for language acquisition, and in the case of immigrant families, the priority for who accesses language

classes is often the person who is most likely to be able to obtain employment. This pattern leads to higher health risks for those unemployed and with- out the ability to speak the dominant languages, including single parents, disabled adults, and chil- dren. Nurses can be advocates for these family members by assisting families with the use of inter- preters, connecting families to community re- sources that teach languages, and using visual pictures and icons to explain health care procedures rather than just verbal instructions.

Religious Diversity Canada is also a country of considerable religious diversity. Although Canada is predominantly Christian, with 7 of every 10 Canadians identifying themselves as either Roman Catholic or Protestant in 2003 (Statistics Canada, 2003b), this pattern is changing. Over the past decades, fewer people have identified as Protestant and more have identified with religions such as Islam, Hinduism, Sikhism, and Buddhism, and more have reported no reli- gion, with 35% in 2010 saying they do not affiliate with any religion (Statistics Canada, 2011d). These shifts are the result of changing sources of immi- grants, and the decline in major Protestant denom- inations since the 1930s, as their members age and fewer young people identify with these denomina- tions. Despite this changing profile, Christianity continues to dominate many Canadian public in- stitutions, including health care.

Religious affiliation affects health and nursing practice in multiple ways, including fostering so- cial inclusion and community support, and, de- pending on the religion, serving as a basis for discrimination and negative effects on health practices, access to care, and acceptance of care. Despite Canada’s professed tolerance for diver- sity, acts of anti-Semitism and discrimination against other non-Christian religious groups are not uncommon, including escalating discrimina- tion against Muslims and presumed Muslims since 2001 (Mojab & El-Kassem, 2008). This discrimination is brought on in part by the dra- matic increase in immigration to Canada from a variety of individuals from diverse religious back- grounds. Canada now leads the world in accept- ing immigrants, with 20.6% of Canadians now foreign born, with the next country accepting immigrants being Germany, at 13% of the

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population being foreign born. This acceptance of immigration brings religious diversity and a weakening of the majority culture, including re- ligious affiliation. The largest share of immi- grants to Canada (57%) came from Asia and the Middle East, and these immigrants are predomi- nately Buddhist, Muslim, and Hindu in religious affiliation. At the same time, many Canadians are claiming no religious affiliation, with as many as 24% of Canadians claiming no connection to religious groups, up from 15% a decade earlier. Still, 64% of Canadians affiliate with Christian religious groups, with the largest group (39%) being Catholics (Welcome/Bienvenue, 2011).

This increase in religious diversity means that in order to offer culturally appropriate nursing care, family nurses need to be familiar with major values and beliefs of each religious group. For example, families within certain religious groups participate regularly in individual and group prayer as part of the healing process (e.g., Catholics), whereas fam- ilies without a religious affiliation do not generally participate in religious prayer. Family nurses can provide appropriate care by asking about religious affiliations and how the families’ religious beliefs affect their values and beliefs about healing. Nurses should also seek families’ expectations of how health care professionals can incorporate religious beliefs into their treatment plan when appropriate and possible. Nurses must also be knowledgeable about not insulting religious beliefs unknowingly. For example, males in the Muslim religion gener- ally do not tolerate being naked in front of females. It may be necessary to ask a male nurse to provide care to a male patient. Likewise, females of the Muslim religion are not allowed to be cared for by male nurses. This religious value should be re- spected whenever possible. If it is not possible, then for females, the husband should be present. Having a Muslim provider is ideal and should be sought when possible to provide optimal and ethical care. This holds true for all major religious groups (Chicago Healthcare Council, 1999).

HOW FAMILY IS UNDERSTOOD IN CANADA

Given this incredible geographical, economic, eth- nocultural, and religious diversity, what constitutes “family” in Canada, and how family is lived and

experienced, varies greatly. Despite this diversity, age-old assumptions about family continue to dom- inate. These ideas shape our expectations about fam- ilies, such that families are “normally” nuclear and comprise a mother, father, and two children. They shape policies, such as the idea that people receiving social assistance should turn to extended family and “exhaust” family resources before accepting social assistance. And they also shape health care providers’ expectations and practices, such as in the belief that families should provide care to elderly members. Ex- ploring and critically scrutinizing these dominant ideas in light of the diverse contextual elements that shape any particular family assists nurses to under- stand their own and families’ expectations, the dif- ferences between those expectations, and tensions that might arise among different stakeholders.

Three general assumptions/expectations about family are especially useful for nurses to explore in order to understand families in Canada and similar industrialized Western countries. First, families are generally assumed to be “nuclear,” that is, to con- sist of two generations, including parents (generally assumed to be heterosexual) and children. Second, women generally are expected to do the majority of parenting and caregiving. Third, family is gen- erally held to be a safe and nurturing experience. In reality, however, people’s experiences vary greatly and differ from these assumptions.

Heterosexual Nuclear Family as the Norm The idea that the heterosexual nuclear family is the norm is belied by statistics; for example, in 2006, 16.5% of families with children in Canada’s met- ropolitan areas and 13.3% of families in rural areas and small towns were lone-parent families. The rate of lone-parent families increased by 8% by 2011, with 1,527,000 children being raised by lone parents (Statistics Canada, 2011a). Statistics Canada notes that throughout the 20th century and into the 21st century, the proportion of large house- holds has decreased with each successive census, and there has been a steadily increasing trend to- ward smaller households. The 2006 census found that there were more than three times as many one- person households as households with five or more persons. Of the 12,437,500 private households, 26.8% were one-person households, whereas 8.7% were households of five or more persons. In 2006,

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women living in a same-sex union represented 0.6% of all women in couples in Canada (or 41,200), and the 49,500 men living in a same-sex union accounted for 0.7% of all men in couples. In 2006, 16% of women in same-sex couples had chil- dren age 24 and under present in the home, repre- senting a smaller share than for women in opposite-sex unions (49%) but a much higher per- centage than for men in same-sex couples (2.9%) (Statistics Canada, 2011a).

Although some people construe living in house- holds with larger numbers of people as a “cultural” preference, doing so often increases financial strain. For example, the Longitudinal Survey of Immi- grants to Canada (LSIC) (Statistics Canada, 2005) notes that, although the average size of a Canadian household was 2.6 persons, the average household size for LSIC immigrants was 3.4 persons, ranging from 3.1 for skilled worker immigrants to 4.0 per- sons for refugees. Most LSIC immigrants reported living in two- (21%), three- (24%), or four-person (22%) households, and were more likely to report living in a household of six or more people (12%) as compared with the Canadian average (3%). Abo- riginal households were somewhat more crowded than the general population, with an average of 2.9 occupants and 2.6 bedrooms, compared with 2.5 and 2.8, respectively, for non-Aboriginal house- holds.

It is important for nurses to understand the eco- nomic and social influences that shape housing for families. For example, the number of lone mothers heading families is, in part, a reflection of the prevalence of violence against women and the so- cial expectation for women to “leave” abusive part- ners. The largest population-based survey focused on violence in Canada revealed that 50.7% of women reported physical assault from a former partner, and that violence is a significant factor in many separations and divorces (Varcoe et al., 2011). If society could decrease violence in the homes, the number of lone-parent families, partic- ularly those run by women and at higher risk for poverty, would in turn decrease.

Canada continued to study other family struc- tures in the 2011 census, including same-sex par- ents, common-law parents, stepfamilies, children living with grandparents, children living in foster homes, and young adults (ages 20 to 29 years) still living in a parental home. Although traditional nuclear families with opposite-sex parents remain

the majority, at two-thirds of all family structures, other structures are growing. Common-law par- ents account for 16.3% of families, and 10% of children under 14 years of age live in stepfamilies. A growing number of children are living with their grandparent(s), with 4.8% of children under 14 years of age living with one or more grandpar- ents, and 0.5% of those children do not have a biological parent in the home. Foster children make up another 0.5% of the children living in families, and 0.8% of children are living with same-sex parents. Finally, the age for independ- ence is increasing, similar to other Westernized countries. Forty-two percent of young adults 20 to 29 years of age are still living or have re- turned to living in a parental home. This trend is more true for males than females.

These trends have important implications for nursing care. For example, family nurses can no longer expect children to have two opposite-sex parents in their home. Family nurses need to assess the current family structure and avoid assumptions or biases regarding expected norms. Each family structure has benefits and risks, and family nurses need to both assess these within individual families, and educate families about changing structures and how those changes influence child development. Nurses also need to be familiar with, and connect families to, appropriate support services to help families do the best they can for their children re- gardless of the family structure. For example, although grandparents raising grandchildren poses risks to the grandparents’ economic stability and connection with peers, the grandchildren have an opportunity to learn more about their family’s his- tory and family tradition than those children not raised by grandparents, and grandparents receive more support from their grandchildren compared with those grandchildren not raised by their grand- parents (Rosenthal & Gladstone, 2000). Although grandparents often struggle with the isolation and economic hardship, most provinces in Canada pro- vide financial support, health care, and legal sup- port for grandparents raising their grandchildren.

Ideals of Motherhood and Women In Canada, prevalent ideas about mothering and women shape families’ experiences, their health, and health care provider expectations. These ideas include mothers living with their husbands and

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being the primary caretaker for their children. De- spite the diversity of family structures and roles, the “gold standard” continues to be mothering within a two-parent family (Ford-Gilboe, 2000), with the ideal being exclusive mothering, or mothering without work outside the home. Another social ex- pectation for women is primary responsibility for family caregiving for dependent elders or those who are ill or have disabilities, especially in the wake of changes to the health care and social serv- ices systems that include deinstitutionalization of care.

These expectations are at odds with other social forces, however, including financial forces and changes to views about women’s interests and ca- pabilities. Women, including mothers, increasingly are expected and desire to work outside the home (Statistics Canada, 2012). In 2009, 72.9% of women with children under 16 living at home were part of the employed workforce; 64.4% of women with children less than age 3 were employed, more than double the figure in 1976, when only 27.6% of these women were employed. Similarly, 69.7% of women whose youngest child was from 3 to 5 years of age were working in 2009, up from 36.8% in 1976. Social policy, such as “workfare” social as- sistance policies, increasingly only provides finan- cial assistance to women with dependent children if they seek employment, making many of these women feel that they are forced into waged labor, even when the work available is not adequate to cover the costs of safe child care. At the same time, policies such as cuts to minimum wage levels have deepened women’s poverty even as they attempt to participate in the waged labor force (Pulkingham, Fuller, & Kershaw, 2010). Women are also seeking higher education and more professional careers. A study by Caponi and Plesca (2009), looking at trends in education, wages, and work hours, found that 50% of women were graduating from college and universities compared with only 44% of men. This trend has also contributed to women shifting away from the more traditional role of full-time caregiving to the more common role of shared re- sponsibilities between work and career and home.

As described earlier, the “ideal” of the nuclear family is often just that, an ideal. Women are in- creasingly lone parents, often living below the poverty line and often on social assistance (Statis- tics Canada, 201a). At the same time, changing ex- pectations of men as fathers mean that fathers are

somewhat more actively engaged in child care and somewhat more likely to be the head of lone-par- ent families than in previous decades. In 2006, there were about four times as many female lone- parent families (1.1 million) as male lone-parent families (281,800) (Statistics Canada, 2011a). This ratio has been fairly consistent over the past several decades, but from 2001 to 2006, male lone-parent families grew more rapidly (15%) than did female lone-parent families (6.3%). At least partly because of gender economics, many children are not being raised by their mothers. For example, the 2006 Canadian census reported that over 28,000 grand- children younger than 18 years were living with their grandparents without parents in the home, with implications for the health of older men and women. Based on federal and provincial and territorial reports from 2000, Farris-Manning and Zandstra (2004) estimated that approximately 76,000 children in Canada were under the protec- tion of Child and Family Services across the coun- try. These trends, juxtaposed against ideals of good mothering, have contributed to phrases such as “working mother” and “welfare mom” that convey negative judgments.

In fact, when families are judged against the ideal of “exclusive” mothering, or against the ideals of family caregiving, they are often found wanting. That is, when women do not devote themselves to mothering exclusively or take up caregiving for a parent, spouse, or other dependent person and forego labor force participation, they are often judged as providing inadequate mothering. Still, the economic and social conditions do not exist for most women to care for children and other de- pendents without also participating in waged work. In Canada, as in most Western countries, the “typ- ical” mother is working outside the home and is often the lone head of a household and may also be living under or near the poverty line, while at the same time being responsible for mothering and/or caregiving of other family members.

Family as Safe and Nurturing In Canada, as in many Western countries, family is portrayed generally as positive, supportive, and safe. But statistics belie this ideal as well. Canada is similar to other Western countries in the levels of violence perpetrated within families and levels of substance use. According to the most conservative

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estimates, 7% of female individuals and 6% of male individuals in current or previous spousal relation- ships reported having experienced some form of spousal violence during the previous 5 years (Statistics Canada, 2006). Violence against women tends to be much more severe than against men. Between 1995 and 2004, male individuals perpe- trated 86% of one-time incidents, 94% of repeat (two to four) incidents, and 97% of chronic inci- dents (Statistics Canada, 2006). In that same time frame, the rate of spousal homicide against female individuals was three to five times greater than the rate of male spousal homicide, a ratio that remains consistent up to 2009 (Zhang, Hoddenbagh, McDonald, & Scrim, 2012). In 2009, 46,918 spousal violence incidents were brought to the at- tention of police, 81% involving female victims and 19% involving male victims (Zhang et al., 2012). Using population surveys, lifetime rates of physical assault by an intimate partner have been estimated at 25% to 30% in Canada and the United States (Johnson & Sacco, 1995; Jones et al., 1999). Phys- ical assault is often accompanied by sexual violence or emotional abuse, and many women experience intimate partner violence in more than one rela- tionship over their lifetime (Johnson, 1996).

Estimates of child abuse rely primarily on cases reported to child welfare authorities and are thus gross underestimates. Based on data from child welfare authorities, the Canadian Incidence Study (CIS) of Reported Child Abuse and Neglect esti- mated a rate of 21.52 investigations of child mal- treatment per 1,000 children (Public Health Agency of Canada, 2001). Importantly, the greatest proportion of reported and substantiated child abuse cases involved neglect, which often overlaps with the social conditions created by poverty. So- cioeconomic status has been shown consistently to be related to parenting effectiveness (Wekerle, Wall, Leung, & Trocmé, 2007). Despite the preva- lence of neglect, less attention is paid to neglect in research, policy, and practice than to severe physi- cal abuse and child sexual abuse, possibly in part because those forms of abuse are more sensational (McLean, 2001) and more visible. Child welfare authorities tend to focus on risk assessment and ur- gent intervention for severe cases of child physical abuse, rather than on the more frequent situations of neglect. Trocmé, MacMillan, Fallon, and De Marco (2003) argue that because the CIS found severe physical harm (severe enough to warrant

medical attention) in about 4% of substantiated cases, assessment and investigation priorities need to be revised and include consideration of long- term needs for housing, income, child care, and so on. Health care providers should focus on helping families to access longer-term and broader social support.

Although it is difficult to estimate the extent of elder abuse in Canada, it is purported to be a significant problem (Walsh & Yon, 2012). Almost 2% of older Canadians indicate that they had ex- perienced more than one type of abuse (Canadian Centre for Justice Statistics, 2011). Elder abuse and neglect encompasses intimate partner violence that continues into older adulthood, and forms of abuse and neglect that arise as persons become more vulnerable with age. As with any form of intimate partner violence, in older adults it is gen- dered—that is, older women are at greater risk than men. Statistics Canada (2011c) reported that in 2009 although the overall rate of violent victimiza- tion was higher for senior men than senior women, family-related violent victimization was higher among senior women. Spouses and grown children were the most common perpetrators of family vio- lence against senior women, and grown children were most often the perpetrators of family violence against senior men.

Substance abuse within families is another fac- tor that may make the experience of family less than safe and nurturing. Most problematic use in Canada involves alcohol. The Canadian Addiction Survey found that, although most Canadians drink in moderation, 6.2% of past-year drinkers engaged in heavy drinking (five drinks or more in a single sitting for male individuals and four or more drinks for female individuals) at least once a week and 25.5% at least once a month (Collin, 2006). Using the Alcohol Use Disorder Identifi- cation Test, which identifies hazardous patterns of alcohol use and indications of alcohol depend- ency, Collin (2006) identified 17% of current drinkers as high-risk drinkers. Although most heavy and hazardous drinkers were male individ- uals younger than 25, this pattern suggests that harmful alcohol use is fairly common. According to the 2002 Canadian Community Health Survey, 2.6% of Canadians age 15 and older (3.8% male and 1.3% female) reported symptoms consistent with alcohol dependence at some time during the 12 months before the survey. Rehm et al. (2006)

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estimate that 9% of disease and disability in Canada is caused by alcohol use. A range of prob- lems are associated with problematic alcohol use, including violence and neglect. In 2004, 14% of Canadians reported using cannabis in the past year and 1% or less reported using other illegal drugs other than cannabis. For those who do use drugs, the effects on families can be profound. For example, one of the most common reasons stated for grandparents raising grandchildren is paternal drug abuse and addiction (Rosenthal & Glad- stone, 2000). For those children raised in a family with active addiction, the risk for all types of abuse increases. Further, several studies in both Canada and the United States document long-term nega- tive outcomes for children being raised by parents addicted to alcohol and other drugs, including mental health risks, higher rates of unemploy- ment, and poor relationship success. For example, a study of 8,472 families in Canada by Walsh, MacMillan, and Jamieson (2003) found that chil- dren exposed to drug-addicted parents were twice as likely to be abused than those without drug addiction in their family.

Given the statistics on violence, neglect, and substance use, although many families are safe and nurturing, nurses cannot safely make this assumption. Indeed, in light of the levels of violence against women, children, and older per- sons, and the levels of substance use, nurses can anticipate that many families they meet are expe- riencing some form of violence, neglectful par- enting, or problematic substance use. In Canada, it is mandatory to report child abuse, but it is not recommended to screen for child abuse. Because of the high rate of false-positive results in screen- ing tests for child maltreatment and the potential for incorrectly labeling people as child abusers, the possible harms outweigh the benefits (MacMillan, 2000). Similarly, insufficient evi- dence of benefit has been reported to warrant screening for other forms of violence (Coker, 2006; MacMillan et al., 2009; Ramsey, Richard- son, Carter, Davidson, & Feder, 2002) and there are no reporting requirements for other forms of abuse outside of child abuse. Nevertheless, nurses need to be aware that family is not always a safe and nurturing experience for people, and to be responsive to indications of harm. Alternatives to screening include “case finding” in which nurses have a clear understanding of the dynamics of

violence and abuse, and develop their practice based on that understanding, using such knowl- edge to attend to each family’s presentation (Ford-Gilboe, Varcoe, Wuest, & Merritt-Gray, 2010). Case finding does not stop at identifying families at risk and in need of further evaluation and intervention, but rather begins the assess- ment phase to identify and explore the incidence of family violence.

CANADIAN HEALTH CARE CONTEXT

The funding and structure of the Canadian health care system influences families, health, and family nursing. Although Canada has “universal” health care and all Canadian citizens have access to what are termed medically necessary services, considerable inequities are present in access to health care, and these inequities are deepening as the health care system is increasingly privatized. The privatized portion of health care primarily includes funding for services and products not covered by the public services and not considered medically necessary, such as vision and dental care, cosmetic surgery, most home health services, and pharmaceuticals. The amount covered and uncovered by the public health care system varies from province to province. Currently, the health care system in Canada is approximately 70% publicly funded and 30% privately funded. This means that many im- portant elements of health care are paid for by in- dividuals or by private insurance. Therefore, in most provinces, medications outside of hospital, many types of treatments such as physiotherapy, and services such as home care are paid for pri- vately in whole or in part. In contrast, the govern- ment discourages physicians from providing private care through disincentives such as requiring physi- cians to choose either private or public clients, charging patients the same fee whether paid by public or private insurance, and in some provinces, banning privatized medical care for any essential medical services.

Thus, despite commitment to universal access, access to health care in Canada is inequitable along many dimensions (Asada & Kephart, 2007; Barr, Pedersen, Pennock, & Rootman, 2008). Families in rural settings have access to fewer services and must pay for their own transportation, accommo- dation, and loss of income to access services.

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Families without private insurance and those with lower incomes face more financial hardship associ- ated with illness. Because some groups of people are more likely to have lower incomes, such as those who are elderly, those with disabilities, and women, families from such groups are more likely to face greater barriers.

Although the Canadian health care system has been dominated by hospital care, over the past sev- eral decades fiscal concerns have stimulated shifts to decrease hospital care and increase the care pro- vided at home. From mental illness, to surgery, to maternity care, to elder care, to end-of-life care, the trend has been to deinstitutionalize care, shorten length of stay, and shift to care “in the community.” Such care mostly means care by fam- ily members, primarily women (Statistics Canada, 2011a), which affects family well-being and health, and, in turn, affects patterns of family nursing (Funk et al., 2010; Williams, Forbes, Mitchell, & Corbett, 2003). Family nurses need to provide added support to all family members in teaching home health care to avoid women in the family suffering from role overload and caregiver burnout. Family nurses can also help advocate for families needing hospitalized care longer when family members are unable to care for the individ- ual at home.

Family nursing is not funded or identified as a separate area of practice in Canada, with most nurses still practicing in hospital settings. Because government health care funding only covers what is deemed to be medically necessary, only a very small proportion of nursing care in homes and communities is funded, leaving families to pay di- rectly. Increasingly, in some areas, the shortage of primary care physicians has made room for family nurse practitioners to provide primary care and enhance health care access. These trends shape families’ experiences of health and affect their health care.

FAMILY NURSING PRACTICE: ATTENDING TO CONTEXT To this point, this chapter has spoken to the sig- nificance of context and offered details on the specific context in which nurses operate in Canada. As the discussion earlier has highlighted, families in Canada live diverse lives that are

shaped by the interface of geography, economics, culture, language, and religion. Similarly, their lives and their health and illness experiences are shaped by differing understandings and forms of “family” and by the imperfect health care system in place in Canada. This health care system, in- cluding policies and norms that dominate health care practices, has been built on limited under- standings of family and health. For example, un- derstandings of family most often reflect Eurocentric, post–World War II notions of the nuclear two-parent, heterosexual family. It is the discrepancy between the reality of families’ lives and the normative expectations and understand- ings of family that often dominate health care set- tings and practices that make attending to context not only important but ethically essential in fam- ily nursing practice.

Overall, attending to context requires taking a relational inquiry stance as a family nurse. It in- volves listening carefully to families; inquiring into their health/illness situations; paying atten- tion to, observing, and critically considering the ways in which contextual elements are embodied in people/families and shape their experiences; and reflecting on how current contextual aspects might be addressed to promote health. An essen- tial feature of this inquiry process is reflexive con- sideration of your own contextual location, including the values, norms, and assumptions of family, health, and nursing that you act both from and within.

The following story illustrates the significance of context to families’ health experiences and how attending to context enhances family nursing practice. As you read Sharon’s story, stay mindful of the contextual elements that seem to be shap- ing the experiences of the two families she meets. Focus on how the elements discussed earlier (e.g., geography, economics, culture, language, reli- gion, understandings of family, health care poli- cies, and normative practices) are shaping the experience and responses of the different family members and of Sharon as a nurse. Also note how Sharon is or is not attending to those elements as she engages with the families. Ask yourself how your own context is similar to or different from Sharon’s, and from the two families’. Further- more, reflect on how those similarities and dif- ferences might affect how you would respond as a nurse.

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and how important supportive family is. Mr. Stanek be- comes annoyed and insists that they cannot come to clinic again. As Greg’s father becomes more frustrated, Sharon finds it more difficult to understand what he is saying be- cause of his heavy accent and rapid talking. Sharon tries to engage Greg by asking him how he is feeling and how it is going at school, but Greg answers Sharon’s questions by shrugging his shoulders and saying “OK.” Greg’s father attempts to return the conversation back to his own con- cerns. Eventually, Sharon says that she will “see what she can do.” The half-hour clinic visit ends with little of the in- take form completed, all parties feeling frustrated, and no follow-up appointment scheduled. As Sharon walks out of the room, the clinic receptionist lets her know that Justin and a woman, who turns out to be his grandmother, have been waiting to see her for their appointment.

Sharon reviews what she knows about Justin from read- ing his intake information. She remembers that the Stony Life Reserve is located several hours from the hospital in which her clinic is located, and that Jackson is a small town near the reserve. Sharon wonders how Justin and his grandmother got to the clinic today. As she walks in the room, Sharon apologizes for keeping them waiting and asks if they drove to the appointment. Justin’s grandmother says one of her brothers drove them because the appoint- ment was too early to be able to come by bus. She also shares that she had to borrow money to pay her brother for gas. Sharon does a brief physical assessment on Justin. Justin, like Greg, barely looks at Sharon, even when she is addressing him directly. Justin appears somewhat over- weight, as does his grandmother, and on assessment Sharon notes that he is 4 feet 5 inches tall and weighs 55 kg (121 lb). With Justin and his grandmother, who in- troduces herself as Rose Tarlier, the intake assessment goes more smoothly for Sharon. Mrs. Tarlier tells her that she has had custody of Justin and his two younger sisters since he was 4 years old and the sisters were infants. She shares with Sharon that Justin’s mother, her daughter, has had problems with alcohol for many years, is now living in Montreal, and has not seen her children for several years. Mrs. Tarlier makes it a point to tell Sharon that she herself has been “clean and sober” for more than 20 years. As Sharon continues with the intake assessment, she finds out that Justin’s grandmother gives Justin his insulin and helps him check his blood sugar. Sharon listens as the grand- mother describes what she has been doing, and Sharon provides positive feedback and encouragement. Although Sharon tries to bring Justin into the conversation, he does not look at her and does not answer her questions. Sharon reviews what subsequent appointments will cover, and

Family Case Study: Sharon’s Story

After several years of experience on a pediatric medical unit, Sharon has begun to work in a pediatric diabetic teaching clinic. She just completed her 1-week orientation, and this morning is about to do an “intake” on two families new to the clinic. It is clinic policy to have a half-hour ap- pointment for “intake” and 15 minutes for subsequent ap- pointments. Families usually attend the clinic for about three or four sessions, biweekly, depending on their needs. The referral information Sharon has on the two families is as follows:

• Family 1: Justin Henderson, 11 years old, is from Stony Life Reserve (designated land for Native Americans). Justin has been newly diagnosed with diabetes. He began an insulin regimen on Tuesday (3 days ago) that was ordered by the general practitioner in a walk-in clinic close to where he lives; Justin was referred to the clinic for diabetic teaching and counseling. This is his first visit to the clinic.

• Family 2: Greg Stanek, 12 years old, is from Belcarra. Greg has been newly diagnosed with diabetes. His in- sulin regimen was started yesterday by the family’s general practitioner, who referred Greg to the clinic for diabetic teaching and counseling. This is his first visit.

Justin’s appointment was scheduled for 9:00, but he does not arrive on time. At 9:15, Sharon decides to see her other new client, Greg Stanek, because he and his fa- ther arrived early. Greg seems small for his age; he is thin and looks quite pale. He is very quiet and barely looks at Sharon. Greg’s father speaks with heavily accented Eng- lish that Sharon recognizes as Czech, in part because she associates Belcarra with the large community of people who emigrated from the Czech Republic. Sharon does a brief physical assessment, noting that Greg is 4 feet 8 inches tall, but weighs only 41 kg (about 90 lb). Sharon attempts to take the family history as outlined on her in- take form, but Greg’s father wants to address the fact that he cannot bring his son to clinic. Greg’s father tells Sharon that he was just laid off from his job as a carpet layer and is required by unemployment insurance policies to be searching for work. Mr. Stanek says bitterly that when he came to Canada he had been promised he could find work in his field as a mining engineer. Greg’s mother works in a local meat processing plant, and she cannot take time off to bring Greg to the clinic without risking the loss of her job.

Sharon reinforces with the father how important it is for Greg to learn about his diabetes and how to manage it, (continued)

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thinking about the distance and gas money, asks if they need one longer appointment next week rather than the usual two short ones a week apart. She schedules the next appointment.

Taking a Relational Inquiry Stance: Attending to context begins by taking a relational inquiry stance to understand what is meaningful and significant to a particular family, and inquiring into the family’s current ex- perience and the contextual intricacies shaping the family’s life. In taking this stance with the two families in the earlier story, what becomes immediately apparent is the way that contextual forces have contributed to and are shaping each of the family’s situations. For example, although Justin’s family may want to live in the Aboriginal community for cultural and social reasons, it may have little choice for eco- nomic reasons. Justin’s grandmother may well be one of many Aboriginal women living on low income or in poverty. At the time of the 2001 census, based on before- tax incomes, more than 36% of Aboriginal women, com- pared with 17% of non-Aboriginal women, were living in poverty (Townson, 2005). High rates of poverty among Aboriginal people have overwhelming effects on health, with the life expectancy of Aboriginal people being 7 years less than the overall Canadian population. Also, as Town- son notes, there are almost twice as many infant deaths among Aboriginal peoples compared to the national norm. As noted, Aboriginal children are much more likely to live in poverty than other Canadian children.

The fact that Justin lives on a reserve may negatively influence his health care access and ability to adhere to recommendations. The matrix of policies related to Abo- riginal people in Canada has ensured that many reserve communities have been denied access to traditional foods (fish, game, naturally growing plants) and have substandard housing, poor water supplies, and insuffi- cient income opportunities. Justin’s grandmother’s atten- dance at residential school, both his mother’s and grandmother’s experiences with alcohol, and the current situation with Justin’s grandmother being his primary caregiver present a clear example of the impact coloniza- tion has on family well-being. Historical colonizing poli- cies and practices in Canada included the creation of the Indian Act; removal of entire communities onto reserves, often with insufficient resources to sustain the commu- nity; government appropriation of Aboriginal lands; forced removal of children into residential schools; out- lawing of cultural and spiritual practices; and widespread discriminatory attitudes toward Aboriginal peoples. The effects of colonization continue to shape people’s health, social, and economic status today (Kubik, Bourassa, &

Hampton, 2009). Colonizing practices continue as Aboriginal people are racialized by wider society and governed by race-based policies, including those related to land ownership, banking, and health care.

Although Justin and his grandmother’s situation may not reflect all of these contextual challenges, this historical and current contextual backdrop shapes their situation and responses to health care providers, including their willing- ness and ability to attend clinic. Moreover, the challenges they face accessing the clinic (e.g., appointment times that are out of sync with bus schedules, having younger chil- dren to care for, the cost of travel) may make coming to clinic seem less than positive in terms of the effect on Justin’s and the family’s overall health.

Similarly, Greg’s family experience has been shaped by multiple factors. Both parents are facing significant job insecurity. The family has experienced immigration laws and policies that limit employment opportunities and con- tribute to the “downward mobility” experienced by many well-educated immigrants. As described, children in recent immigrant families and racialized families are most likely to live in poverty because of overrepresentation of racialized groups in low-paying jobs, market failure to recognize international work experience and credentials, and racial discrimination in employment (2011 Child Poverty Report Card, First Call, 2011).

Canada is a country of considerable ethnic diversity, but despite national commitment to tolerance and multi- culturalism, racialized groups experience considerable discrimination both in policies and institutions, and in the attitudes expressed toward them at an interpersonal level. Was this playing out during the clinic visit? Although it may not have been Sharon’s intent to be discriminatory, the way in which she disregarded the contextual reality of Mr. Stanek’s employment and its implications for future clinic visits and the frustration she felt toward him was a form of intolerance. Taking a stance of inquiry to attend to context would have enabled Sharon to be aware of the likelihood of discriminatory experiences and of the poten- tial health effects.

Listening and Paying Attention to Experience and Context: Attending to context involves listening carefully to families, and to what is meaningful and significant within the cur- rent context of their lives. For Justin and his grandmother, who live in a rural setting, and for Greg’s family, where both parents need to work, it becomes apparent that ge- ography, economics, and health are intricately intertwined. For example, although for Sharon what is most significant is getting Greg’s family to attend clinic so Greg’s diabetes

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can be monitored and addressed, for Greg’s father, find- ing and maintaining employment is of greatest concern. Moreover, the experience of being told that he would be able to work in his profession and then finding that this was not the case may well be influencing his response and willingness to engage with yet another authority and institution that does not seem to be recognizing the im- portance of his employment or interested in what is most pressing for him. Although Sharon cannot address the employment concern directly within her current role (i.e., she cannot help find him a job), it is obvious that those concerns will ultimately affect Greg’s experience and management of diabetes. Thus, listening to and recogniz- ing the interrelationship of those concerns regarding how the family will be able and willing to care for Greg and his diabetes is crucial.

In fact, the well-intended clinic may be heightening health challenges for families by not considering these con- textual elements. Even how clinic appointments have been structured as short, frequent sessions affects both families’ ability to attend clinic and ignores the socio-environmental elements affecting families’ health on a day-to-day basis. Thus, attending to family context involves also attending to the health care context. Depending on the setting of care, the nurse would have to work within that context to sup- port more responsive care. For example, is it possible to have fewer, longer appointments? Is a longer intake visit possible—not just for Greg’s family, but for others as well? Even within the prescribed time frame, the nurse should acknowledge what is of meaning and significance to the family.

Attending to context involves acknowledging Greg’s fa- ther’s distress about his employment and inviting him to talk about what it has been like for different family mem- bers as they have sought employment and attempted to build a life with limited resources, support, or both. As part of this process, it would be important to communicate re- spect and genuine interest and concern, asking what might be helpful from their perspective, how the clinic could as- sist them in caring for Greg’s diabetes in light of the other challenges they are experiencing. On the surface, focusing on the father’s concerns might not seem to be the top nursing priority (or even relevant to diabetic care), but doing so might reduce frustration for both Sharon and Greg’s father, make better use of time, and allow them to attend to Greg’s diabetes more effectively. If the family concerns are not addressed, Greg’s care is jeopardized, because he may not come back to the clinic.

Listening and paying attention to experience and con- text with Justin’s family brings attention to the geographical distance between the family’s home and the clinic, and

raises questions about other possibilities for supporting the family in diabetes care. For example, knowing the eco- nomic statistics for Aboriginal women, the cost of travel to the clinic might have an impact on the family. If the family is on a limited income, frequent travel may be impossible and may take money from other essential needs. In re- sponse, Sharon might look into resources at the local level, such as a community health representative or local com- munity health nurse, who might be able to provide face- to-face care to the family while liaising with the clinic so that the family does not need to travel such a great distance so frequently.

Overall, attending to context sets one up to be curious, to be interested, and to inquire, rather than make judg- ments and assumptions based on surface characteristics and behaviors. For example, both Greg and Justin were quiet, did not make eye contact, and did not respond very much to Sharon. Rather than making assumptions about the children based on her own location and context, Sharon might intentionally reflect on the contexts in which they have been living recently. As a result, their responses might be viewed through a range of possibilities, including everything from wondering about the physiological effect of diabetes, to the immediate effect of the diagnosis of dia- betes, to the experience of coming to the clinic for the first time, to the multiple contextual experiences and challenges they and their families have been living. Part of assessing the context includes the awareness of cultural differences, which affect eye contact, reaction to health professionals, reaction to genders, and behavior toward adults and elders. Attending to context can cue nurses to stay open to possi- bilities, gently and thoughtfully reaching out to connect with people and families as they are in the moment. Rather than focusing on behavior or lack of response as a prob- lem or frustration, any response is viewed contextually. People and families are not measured against any norms; rather, the goal is to understand their reactions contextually and to respond in a meaningful and relevant manner using inquiry rather than judgment.

Attending to context also moves us beyond the imme- diate situation of particular patients to question how larger policies and structures governing our practice and agency are affecting families. That is, the contextual particularities of these families reveal limitations of the policies and struc- tures of the clinic more generally. Clinic policies and struc- tures might need to be changed to be more responsive to families. For example, offering home visits, evening ap- pointments, or both for families who have both parents working and are unable to make daytime appointments might enhance the clinic’s responsiveness. Similarly, seeing

(continued)

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the family in context draws attention to the importance of working with the contexts within which the families live. This could include everything from intentionally establishing relationships with government departments and commu- nity agencies that are part of the family’s context that might liaise with the clinic in providing services and resources, to lobbying for increased access and resources for particular groups or particular services and supplies.

In regard to these particular families, first, the nurse would want to optimize her ability to provide optimal care given the restrictions within the current system. She must prioritize her care to both acknowledge the families’ cir- cumstances and begin to support Greg and Justin within their families and those circumstances. Beyond a more flexible pattern of appointments, are there other providers who might be involved? A social worker, child and youth care worker, or other resources may be available. Ways to enhance access to health care, such as resources for transportation, may be available. The nurse would want to draw on broader social resources, such as those related to immigration and employment, resources for working parents (i.e., evening hours, weekend hours, online care, etc.), and resources for parents (i.e., counseling, support groups, other forms of diabetic care education such as local classes, online classes, books, home health serv- ices). Acknowledging Greg’s father’s concerns and sup- porting him through referrals will allow the nurse to integrate attention to the family while focusing on Greg and his diabetes. In so doing, Sharon will develop ap- proaches and knowledge of resources for a range of other families as well.

Reflexivity: Reflexivity, meaning intentional and critical reflection on one’s own understanding and actions in context, is cen- tral to using contextual knowledge. Reflexivity draws attention to a nurse’s own contextual background, includ- ing taken-for-granted assumptions, stereotypes, and knowledge one draws on when engaging with families. Examining how a nurse’s own context and social location shape and structure her nursing is a first step to attend- ing to families’ contexts. For example, if Sharon had grown up in a rural setting or in poverty, it would be important for her to consider reflexively how those expe- riences influence her when working with families who share that context and social location. Her background might lead her to see herself as successful despite those constraints, and to overlook how the challenges she faced and privileges she enjoyed might differ from the experiences of the families with whom she is working. Or, if she had grown up in a middle-class urban setting,

she may find that she is somewhat oblivious to or does not think to consider the challenges that poverty and geography raise in accessing health care. Similarly, as a nurse working within a diverse milieu, it is important for Sharon to consider how her own family history might be shaping her attitudes toward immigrants, people whose first language is not English, racialized groups, Aboriginal people, and other groups. Perhaps she herself is an im- migrant, perhaps she is a member of a racialized group, or perhaps she is a member of dominant groups—English speaking, Euro-Canadian, middle class. It is important that she ask herself how her religious affiliations (or lack thereof) shape how she thinks religion is relevant to health and to her nursing practice.

Although each aspect of Sharon’s social location may shape her thinking, as Applebaum (2001) notes, one’s social location “does not imply that we are inevitably locked within a particular perspective. White feminists can be anti-racist, men can be feminists, and heterosexuals can be ‘straight but not narrow’” (p. 416). By reflexively scruti- nizing our own social locations, we can examine our understandings and make explicit decisions about how to draw on (or not) various views and assumptions.

Examining our own contexts and social locations to see how we are limiting our views of families can be challenging. We can see more easily our own disadvan- tages than our privileges. For example, Sharon might have to work harder to see how her privilege as a se- curely employed, fluent English-speaking health care provider gives her an advantage that Greg’s father does not have. If she has experienced employment disadvan- tages based on her gender, she might see him as a privileged man and have difficulty recognizing the challenges he faces.

Overall, reflexivity in family nursing involves developing a critical awareness of our own context and social loca- tion, scrutinizing how that context/location is shaping our view of a particular family, and intentionally looking be- yond that location to consider the family within its own context. In Sharon’s situation, this would involve her examining how the rural context, economics, language, ethnicity, and religion, and her understandings of these, shape how she is engaging with the families. She might ask how her own experiences of family are shaping her ability to see and accept the differing forms of family—for example, a family in which the parents are separated, such as Greg’s, and a grandmother-led family such as Justin’s. How does her own location enable or limit her ability to understand how difficult it might be for Greg’s father and mother to get him to the clinic appointments given their current family situation?

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Engaging in such reflexive examination also enables consid- eration of the wider sociopolitical elements shaping families’ experiences, such as contextual factors (e.g., the stress of immigration), that may have contributed to Greg’s parents separating from one another. At the same time, approaching her work in this reflexive manner highlights areas where she may need to learn more. For example, how well does Sharon understand the history of the Aboriginal people with whom she is working? How well does she understand the relationship between historical trauma and diabetes? How is diabetes cared for in Czechoslovakia versus the Aboriginal culture versus the broader Canadian culture? What are the roles of children in understanding and participating in their care across these multiple overlapping cultures?

present standardized action steps. The same action may in one case be responsive and health promoting and in an- other case not be. Thus, the question of how to intervene is one that needs to be asked in and tailored to each and every situation: How might I best relate to this family in a way that is meaningful and significant and promotes their health and healing capacity?

Consider how you might respond as a family nurse in the situation above. Where would you begin? What would you focus on? For example, it is evident from their facial expressions and the question they pose that the daughters are very worried about their mother. That might be an ef- fective place to start because the question points to their immediate concern, to what is of meaning and significance to them. “Following their lead” (their worried expressions) is a form of both assessment and intervention in a rela- tional inquiry approach. Acknowledging Sandra and Simone’s worry could be a way of joining them in their experience and furthering your understanding of both the immediate family situation and the context of their lives.

As you follow their lead and inquire into their living experience and what is of meaning and significance to them, focus too on picking up contextual cues. For exam- ple, you might respond by sharing your observations in a tentative manner by stating, “You look pretty worried,” or, “It’s hard not knowing what is wrong with your mom,” to invite them to confirm, expand, or modify your under- standing. Making inclusive observations, asking open- ended questions, and being interested to “know more” invites people/families to lead the way. By working in this collaborative manner, you work with the family to make connections between experiences and context and dis- cern the “so what” for action. This involves recognizing the patterns of capacity and of adversity that are simulta- neously part of the person’s/family’s illness experience. It also enables you to understand how contextual elements are shaping the situation and what their immediate needs might be. For example, as you look contextually you might be concerned about the caregiving load that Simone is carrying (looking after her mother, brother, and grandfather). If you were working from a relational in- quiry approach that nursing concern is not something you know, you inquire into its relevance in terms of ca- pacity/adversity; keep in mind that what might be con- sidered to be adversity to one person/family, may not be adversity to another. Asking “How has it been for you to be caring for your mom, brother, and grandfather while your mom is ill?” enables you to learn how contextual elements are meaningfully experienced by the person/family. By inquiring, you might find that nothing

Family Case Study: Attending to Context

Mrs. Dickson, a 40-year-old woman admitted with a diagno- sis of bowel cancer, is a single mother of four children who is experiencing postoperative complications. Discharged home 3 days prior, Mrs. Dickson has been readmitted via ambulance with undiagnosed pain and extreme nausea. Her eldest daughter Sandra (age 21 years and married) and her third daughter Simone (age 17 years), who are present in the room, describe how their mother collapsed at home after screaming out in pain. Throughout Mrs. Dickson’s illness, Simone, who is the eldest child at home (their middle sister lives in another city), has taken the role of primary caregiver for her mother, her 13-year-old brother, and her 86-year-old grandfather, who lives with them. As you enter the room, they are sitting beside their sedated mother. They look up with strained expressions and ask whether the doctors have figured out what is wrong with their mom.

What Intervention Strategies Might You Employ? A relational inquiry approach to family nursing rests on the assumption that what constitutes high-quality nursing care can only be determined in the relational situation. Because the experiences of people/families vary so greatly, as do the realities within which health care occurs, there is no linearly laid out sequence or prescribed method. There are no prescriptions for assessment or action because it all depends on the situation. What constitutes contextually responsive care depends on the particularities of specific nursing situations. Because we work with particular people/families in particular situations, it is impossible to (continued)

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SUMMARY

■ One of the few predictable characteristics of families is diversity. By understanding and intentionally attending to diversity when providing care, family nurses in Canada are prepared to take into account the contextual nature of families’ health and illness experi- ences, and how their lives are shaped by their circumstances.

■ Contexts are literally embodied in people; both nurses and families live their contexts and circumstances.

■ For family nurses in Canada to work respon- sively with a range of different families, it re- quires understanding the particular families.

■ Understanding the families entails taking a stance of inquiry, listening and paying at- tention to the specific experiences of partic- ular families, reflexively attending to one’s own understandings, and continuously developing new knowledge and cultural awareness. This process embraces the com- plexity of family nursing care and provides more relational, and thereby more appro- priate and successful, care for families.

■ Family nurses in Canada must also be aware of the risks facing families, including chang- ing family structures, risks for health dispari- ties, risks for family violence, and risks for families living in poverty, especially in rural communities.

■ Family nurses in Canada must optimize fam- ily care within a structure that limits out- of-hospital care and limits access to care in rural communities. Family nurses need to collaborate with other providers and re- sources to help families optimize their health and long-term health outcomes.

184 Families Across the Health Continuum

has changed—that since her mother works long hours Si- mone is used to assuming a lot of the domestic chores or that she has a lot of support from friends or relatives. Or, you may find that the added responsibility of caring for her mother while her mother is ill is more than she can handle, and she may open up and ask for more as- sistance in problem solving.

As you “listen to and for context” you might learn of other socio-contextual structures and processes (economics, health care policies, values, norms, tradi- tions, history) that are shaping the family’s experience. Knowing the population you serve (e.g., income levels, employment opportunities, social financial assistance) you are attuned to listen for a range of possibilities without assuming how this particular family “fits” with population norms. So, this family might be fine in terms of managing household and caregiving needs, but they might not have access to money or transportation to get to the hospital. Or, the worry for her mother may be affecting Simone’s ability to do schoolwork or hold down her part-time job that contributes to the family’s income. Thus, as you listen contextually you are listening and inquiring into resources—the resources they have, need, and/or can access. You also listen for what has enabled them to live in adversity—that is, what capacities they have within them and/or have accessed or enlisted. Similarly, you check your own view and your own capaci- ties. Are your immediate nursing concerns obscuring your understanding of broader contextual issues and/or longer-term concerns? For example, given that you are located in an acute care setting, is Mrs. Dickson’s physical well-being your primary concern? Are you able to extend your view to consider the longer-term health impact of this illness situation? How do you balance your need to care for Mrs. Dickson’s acute health needs, while simultaneously consider her family contextual needs?

Evaluating Family Nursing Action: Specifically, relational inquiry involves asking the person/family for their version of the story and purpose- fully opening the space for their decision making. Thus, evaluation of your nursing intervention involves an ongo- ing reflexive process where you “check in” with both fami- lies and yourself. Evaluation is centered in continually asking the following questions: How might I be as respon- sive as possible? How are my actions expanding (or con- straining) the choice and capacity of this family? How might I support this family in ways that are meaningful to them and in ways that enable them to address their

concerns and realize their aspirations? Relational inquiry helps you to evaluate nursing effectiveness in the longer as well as the shorter term. For example, a quick dis- charge may result in a readmission for Mrs. Dickson if the context of the family situation is not taken into account. It also helps you to provide family nursing care, beyond the immediate individual patient and beyond the immediate acute health care needs.

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187

Genomics and Family Nursing Across the Life Span

c h a p t e r 7

Dale Halsey Lea, MPH, RN, CGC, FAAN

C r i t i c a l C o n c e p t s

■ Genomics refers to the study of all genes in the human genome and their interactions with each other and the environment.

■ Genetics refers to the study of individual genes and their effect on clinical disorders.

■ Biological members of a family may share the risk for disease because of genetic factors.

■ Families are unique and respond to genetic discoveries differently based on personal coping styles, family values, beliefs, and patterns of communication. Even within the same family, members react differently.

■ In every case, it is the nurse’s role to support families to make decisions that are most appropriate for their particular circumstances, cultures, and beliefs.

■ The two major nursing responsibilities when a genetic risk is identified are to help families understand that the risk is present and to help families make decisions about management and surveillance.

■ Results of genetic tests are private and cannot be disclosed to other family members without the tested individual’s consent.

■ Nurses identify accurate information and access resources for families with concerns regarding genetic and genomic health risks.

■ All nurses, regardless of their areas of practice, apply an understanding of the effects of genetic risk factors when conducting assessments, planning, and evaluating nursing interventions.

Some illnesses “run in families” and people com- monly wonder if they, or their children, will de- velop a disease that is present in their parents or grandparents. The ability to apply an understand- ing of genetics in the care of families is a priority for nurses and for all health care providers. As a re- sult of genomic research and the resultant rapidly changing body of knowledge regarding genetic in- fluences on health and illness, more emphasis has

been placed on involving all health care providers in this field. This integration of genetic knowledge, attitudes, and skills is especially important for nurses, and is reflected in the Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics (Consensus Panel, 2008), hereafter re- ferred to in this chapter as “essential nursing com- petencies.” Essential nursing competencies include both the ability to apply genetic and genomic

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knowledge in conducting nursing assessments and the ability to assess responses to genetic and genomic information (Consensus Panel, 2008). These com- petencies are also identified in documents for general practitioners in the United Kingdom (National Genetics Education and Development Centre, 2008).

It is important for family nurses to be aware of the effect of genetics on families because biologi- cal family members share genetic risk factors. In addition, families function as systems with shared health risks that affect the whole family, and fam- ily processes mediate coping and adaptation of both individual family members and the family unit as a whole (Walsh, 2003). Family members inevitably have an effect on each other’s lives, and in many cases, they support each other in seeking and maintaining healthy growth and develop- ment, regardless of their biological kinship. Much of what is known about the health care needs of persons with genetic conditions has focused on the individual, with less attention directed toward the person’s biological and socially defined family. All nurses, regardless of their areas of practice, apply an understanding of the effects of genetic risk factors when conducting assessments, plan- ning, and evaluating nursing interventions.

This chapter describes nursing responsibilities for families of persons who have, or are at risk for having, genetic conditions. These responsibilities are described for families before conception, with neonates, teens in families, and families with mem- bers in the middle to elder years. The goal of the chapter is to describe the relevance of genetic in- formation within families when there is a question about genetic aspects of health or disease for mem- bers of the family. Family nursing knowledge is in- complete without attention to the effects of genetic factors on health and functioning of individuals, as well as on family units.

GENETICS AND GENOMICS

The term genomics is commonly used to reflect the study of all genes in the human genome, as well as interactions among genes and with environmental and other psychosocial or cultural factors (Feetham & Thomson, 2006). The human genome consists of approximately 3.1 billion bases of DNA se- quence, some of which are unique to each person (National Human Genome Research Institute,

2012). Individuals inherit genetic material from their parents and pass it on to their children. Some conditions result from a change or mutation in a DNA sequence of a gene. A gene is defined as the basic physical unit of inheritance (National Human Genome Research Institute, 2013). For example, Huntington’s disease results from a specific change within the DNA sequence in a particular gene. This is an example of a condition traditionally re- ferred to as a “Mendelian” or “single-gene disor- der” and is one that follows an identified pattern of traditional inheritance in families, in this case, au- tosomal dominant inheritance. Persons who are bi- ologically related may have inherited many of the same DNA sequences in addition to having shared common environments with other family mem- bers; this combination ultimately increases risks for having similar specific illnesses.

Researchers also identify common genetic vari- ations known as single-nucleotide polymorphisms. These variations may not cause an actual disruption in the DNA coding but can often be used as tools that help scientists and clinicians recognize DNA variations that may be associated with disease. These conditions include common disorders, such as diabetes, that are observed to occur more fre- quently in families but do not follow a traditional pattern of inheritance.

A core competency for nurses is to maintain knowledge of the relationships of genetic and ge- nomic factors to the health of individuals and their families. Cancer provides an example of the rela- tionships between genes, environment, and health. The development of a malignant tumor is the result of a complex series of changes at the cellular level. A number of genes protect against cancer by regu- lating cell division (during mitosis), and mutations in those genes can occur over the course of a per- son’s lifetime, affecting one’s predisposition to can- cer. A person may be at increased risk of developing cancer if an inherited mutation occurs in one of those genes or if exposed to environmental factors that influence genetic mutations. For example, tumor suppressor genes help protect against the de- velopment of breast cancer. If a woman inherits a mutation in a tumor suppressor gene (such as the BRCA1 gene), she has lost some of her protection against breast cancer from birth, but she will not necessarily develop cancer unless other cellular changes (some of which are influenced by factors such as her reproductive history) occur during her

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lifetime (Bougie & Weberpals, 2011). Others in her family also may have inherited the same mutation and are similarly at risk. If she subsequently be- comes a smoker, she has an additional increased risk for lung cancer because of the environmental influ- ence of smoking on cell division in her lungs. In families where smoking is the norm, there may be a perceived “familial” condition because of the shared environmental and genetic influences on a number of members of the family. Box 7-1 lists in- herited and multifactor inherited genetic conditions.

GENETIC TESTING

Genetic testing can be performed for several pur- poses, including prenatal diagnosis, detection of carrier status, predictive testing for familial disor- ders, and presymptomatic testing. See Table 7-1 for types of genetic tests. Prenatal testing is avail- able to pregnant women during a pregnancy, such as prenatal testing for Down syndrome. Carrier testing can tell people if they have (carry) a gene alteration for a particular kind of inherited disorder called an autosomal recessive genetic disorder, such as cystic fibrosis or sickle cell anemia. Predictive testing can identify individuals who have a higher chance of getting a disease before the symptoms appear. Predictive testing is available for inherited genetic risk factors that make it more likely for someone to develop certain cancers, such as colon or breast cancer. Presymptomatic genetic testing can indicate which family members are at risk for a certain genetic condition that is already known to be present in their family. This type of testing is

performed for people who have not yet shown symp- toms of a disease, such as Huntington’s disease (National Human Genome Research Institute, 2011).

The National Comprehensive Cancer Network (2008) continually updates guidelines that specify what kind of screening is indicated for a person who has a gene mutation that increases the chances of can- cer developing. For example, family members may seek testing if they are at greater risk for familial colon cancer (Madlensky, Esplen, Gallinger, McLauglin, & Goel, 2003). In some cases, clinical practice guideline criteria recommend that genetic testing be done to determine whether a person is at risk.

A new type of genetic testing, called pharmaco- genetic testing, is performed to examine an indi- vidual’s genes to determine how medications are absorbed, move through the body, and are metab- olized by the body. The purpose of pharmacoge- netic testing is so that health professionals can create tailored drug treatments that are individu- alized and specific to each person. For example, there is a test that is used in patients who have chronic myelogenous leukemia. The test indicates which patients will benefit from the medication Gleevec (National Human Genome Research Institute, 2011). In addition, gene changes can af- fect how an individual’s body metabolizes some medications. For instance, patients can be tested to see if they are poor metabolizers, intermediate metabolizers, or ultrarapid metabolizers. Based on the pharmacogenetic test results, patients would be prescribed the right amount of the medication for their body. For instance, pharmacogenetic test- ing can help determine the best dose of the blood- thinning medication warfarin. A patient who is a

Genomics and Family Nursing Across the Life Span 189

BOX 7-1 Genetic Conditions: Inherited and Multifactor Inherited Genetic Conditions

■ Huntington’s disease ■ Cystic fibrosis ■ Sickle cell anemia ■ Familial hypercholesterolemia

Multifactor Conditions—Combination of Genetics and Environment ■ Heart disease ■ Diabetes ■ Most cancers ■ Alzheimer’s disease

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poor metabolizer will be prescribed a lower dose of warfarin, and a person who is an ultrarapid metabolizer will be prescribed a higher dose of warfarin (National Human Genome Research Institute, 2011).

Another new type of genetic test, called direct- to-consumer (DTC) genetic testing, is now avail- able to the general public. DTC genetic tests are offered over the Internet. They usually involve re- ceiving a packet in the mail for DTC genetic test- ing, which includes instructions and materials for individuals to scrape a few cells from the inside of their cheek and mail the sample to a particular lab- oratory to perform the genetic tests (National Human Genome Research Institute, 2012). Several companies offer DTC genetic testing, including the company 23andMe, which claims that its test- ing can “help you manage risk and make informed decisions” (23andMe, 2012).

The market for DTC genetic tests may increase individuals’ awareness of genetic diseases and allow them to take a more proactive role in their health care (Genetics Home Reference, 2012). The types of DTC tests that are offered include those that evaluate parts of a person’s genome for variants that may have an influence on that person’s risk for developing particular diseases such as Alzheimer’s

disease. The DTC genetic tests offered by compa- nies also claim they can test for particular genetic markers that may indicate a person’s ancestry, per- sonality, or physical traits, some of which may have implications for the person’s health.

It is important that nurses are aware of DTC so that they can advise patients interested in DTC to meet with health care providers or genetic coun- selors to learn more about this type of testing and its accuracy and applicability to health care. Fur- thermore, nurses and other health care profession- als should be aware of the reliability of DTC genetic testing. In 2010, the U.S. Government Ac- countability Office (GAO) conducted a study of DTC genetic testing to determine its reliability. Using fictitious names for consumers, they submit- ted samples to several DTC companies. The results that the donors received about disease risk predic- tions varied across the companies, showing that the identical DNA samples submitted yielded contra- dictory results. Sometimes, the DNA-based predic- tions conflicted with their actual medical conditions (U.S. Government Accountability Office, 2010). People who are considering a DTC genetic test should first talk about this type of testing with their health care provider or a genetic counselor. The concern is that without guidance from a health care

190 Families Across the Health Continuum

Table 7-1 Types of Genetic Tests

Diagnostic

Carrier

Predictive or presymptomatic

Prenatal diagnosis

Pharmacogenetic testing

Direct-to-consumer genetic testing

Performed when signs and/or symptoms of a genetic condition are present. Confirms whether or not an individual has the suspected condition.

Detects whether a person is a carrier of either an autosomal recessive or an X-linked disorder.

A carrier of an autosomal recessive condition usually has no signs of the condition and will be at risk for having an affected child if the other parent is also a carrier. He has one normal copy of the gene in question and one mutated copy.

A female carrier of an X-linked condition has one normal copy of the gene on the X chromo- some and one mutated copy of the gene on the other X chromosome, and generally has no signs or very mild signs of the condition. Her sons have a 50% chance of having the condition, and her daughters have a 50% chance of being carriers.

Performed on healthy individuals; detects whether they inherited a mutation in a gene and, therefore, whether they will or may develop a condition in the future.

Genetic test performed on the fetus. Indicates whether the fetus has inherited the gene mutation that causes a specific condition and, therefore, whether the child will develop that condition.

Analyzes a person’s genes to understand how drugs may move through the body and be bro- ken down. The purpose of pharmacogenetic testing is to help select drug treatments that are best suited for each person.

Direct-to-consumer (DTC) genetic tests are marketed directly to the general public, usually via the Internet. DTC genetic testing provides access to an individual’s genetic information, usually without involving a health care professional.

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provider or genetic counselor, the individual may make significant decisions about prevention or a particular treatment that is based on incomplete or inaccurate information (Genetics Home Refer- ence, 2012; National Human Genome Research Institute, 2013).

Disadvantages of Predictive Genetic Tests Nurses should understand the differences in the types of genetic tests that families may consider and the potential advantages or disadvantages of pre- dictive genetic tests summarized in Box 7-2. Nurses who participate in discussions about genetic testing

must maintain current knowledge on these tests, as well as on new technology for testing and interpre- tations of results.

Genetic tests have limitations that vary accord- ing to the specific test. For some tests, not all per- sons who want the test may qualify, which occurs when their family history does not suggest that the disease has a major genetic component, or where the genetic mutation that causes the disease has not been identified. For some tests, it is possible that a result may be difficult to interpret. For some conditions, genetic mutations have been discov- ered that are associated with the disease in that family. Because many genes may be associated with one condition, or a number of different mu- tations may be possible in a gene, it is often neces- sary to test an affected family member first to try to identify which gene is involved and which type of mutation is causing the disease in that family. A sample is taken from the affected person to de- termine whether a genetic mutation can be iden- tified that is associated with that disease. This may not be possible if the affected person in the family has passed away or if the affected person refuses to undergo the genetic testing to help other family members.

Another limit to genetic testing is the fact that results may not be definitive. For example, a test result of an infant screened for cystic fibrosis may be in the positive range for a screening test. A pos- itive screening test simply means, however, that a diagnostic test is required to determine whether the infant has the condition. It is important for parents to understand that, in some infants, a diagnostic test result can indicate that the infant has a genetic condition and will need further evaluation and treatment, and in other cases, subsequent tests will be normal. When an infant has further evaluation, and is found not to have the condition, the first test result is sometimes referred to as a false positive, or an out-of-range result that required further test- ing. Parents who understand the reason for the re- peated testing tend to experience less stress than those who do not (Hewlett & Waisbren, 2006). When a family receives an abnormal newborn screening test result, it is crucial for the nurse to help the family understand that abnormal results from a screening test do not necessarily mean that the child is ill or has the disease (Hewlett & Waisbren, 2006). The waiting period between the newborn screening result and the diagnostic testing is known

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BOX 7-2 Potential Advantages and Disadvantages of Predictive Genetic Tests

Potential advantages of testing include:

■ Opportunity to learn whether one has an increased likelihood of developing an inherited disease; in those who prefer certainty, this can help resolve feelings of discomfort, even if the result shows the person has in- herited the condition

■ Relief from worry about future health risks for a specific disease if the test is negative

■ Information that can be used for making reproductive decisions

■ Information to inform lifestyle choices (e.g., food choices, smoking, alcohol use, contraceptive choice)

■ Information to guide clinical surveillance or manage- ment of the condition

■ Information for other family members about their own status

■ Confirmation of a diagnosis that has been suspected (i.e., that early or nonspecific signs and symptoms are due to a specific condition)

Potential disadvantages are that the test results may provide:

■ A source of increased anxiety about the future ■ Guilt at having survived when others in the family are

affected, if the result is negative (“survivor’s guilt”) ■ Concern about potential discrimination based on

genetic test results ■ Regret about past life decisions (such as not having

children) ■ Changes in family attitudes toward the person who

has been tested (such as less reliance on them for support)

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to be especially difficult for parents (Tluczek, Koscik, Farrell, & Rock, 2005).

FAMILY DISCLOSURE OF GENETIC INFORMATION

Communicating information about the genetic as- pects of a condition to families at the time of diag- nosis and over time is an important role for nurses and other health care professionals (Gallo, Angst, Knafl, Twomey, & Hadley, 2010). Having an ef- fective partnership and communication between health care professionals and families is essential to the success of developing both collaborative and therapeutic working relationships (Levetown & American Pediatric Committeee, 2008). Nurses work with families through a cascade of decisions and information about the genetic disorder (Reid Ponte & Peterson, 2008).

Gallo et al. (2010) describe four main themes relative to how health care professionals share ge- netic information with parents of children with a genetic condition:

■ Sharing information with parents ■ Taking into account parental preferences ■ Understanding the condition ■ Helping the parents inform others about the

genetic condition

Sharing information with parents should be ini- tiated at the time of diagnosis and then tailored over time based on the parents’ particular needs, the characteristics of the child’s condition, and the environmental factors (Gallo et al., 2010). Impor- tant roles of nurses in this process include reinforc- ing the information to help parents understand the condition, coordinating the patient’s care, educat- ing parents on expectations, discussing potential management of the care for their child at home, and helping the parents to inform others about their child’s genetic condition (Gallo et al., 2010).

Access to genetic information gained from ge- netic testing, as well as from family history, raises a host of questions for the family regarding confi- dentiality that includes the following: who to tell, what and when to tell them, and how much to share. Nurses must maintain the confidentiality of each family member’s genetic testing information. It is completely up to the individual to determine whether or not to reveal information about genetic

risks, testing, disease, or management. Results of genetic tests are private, and in the United States, they cannot be disclosed to other family members without the tested person’s consent (U.S. Depart- ment of Health and Human Services, 1996). In the United States, the Health Insurance Portability and Accountability Act (HIPAA) permits disclosures of health information if there is an immediate and se- rious threat to the person and if the disclosure could reasonably lessen or prevent the threat (U.S. Department of Health and Human Services, 1996). In most cases, however, the choice of disclosure of genetic information is an individual decision that is made in the context of the family.

Discovery of health problems in more than one family member should be accompanied by a dis- cussion with family members regarding their un- derstanding of risks for potentially inherited disorders. Disclosure can be a challenging task, as the person with the genetic mutation must decide who to inform, what to say, and when to talk about this finding (Gaff et al., 2007).

Family members may prefer to maintain pri- vacy regarding their decision about predictive testing, even within the family. This decision may reflect an attempt to avoid disagreements within the family, an attempt to protect others in the family from sadness or worry, or an attempt to prevent discrimination or bias. For example, peo- ple who have predictive Huntington’s disease test- ing may be reluctant to share this information with their primary care provider. This reluctance may be because they fear that any notation in their medical record may be accessed by an employer or insurance provider, which may lead to loss of employment or insurance. Although laws have been passed that prohibit insurance or employ- ment discrimination based on a person’s geno- type, some individuals may be concerned that revealing their genotype may place them at risk for discrimination (Penziner et al., 2008).

When one person in a family has a condition that is caused by an alteration in a single gene, such as a gene associated with hereditary breast or ovarian cancer, the person with the mutation is asked to no- tify others in the family that they too may have this same DNA mutation. In general, the family mem- bers themselves pass on this information, but occa- sionally, with the consent of all concerned, direct conversations can occur between the nurse and other family members. Because families vary in

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their adaptability regarding health challenges, fam- ilies vary in how they decide to share information (McDaniel, Rolland, Feetham, & Miller, 2006).

Both individual and family relationship factors can influence communication among family mem- bers. Nurses should, therefore, have a good under- standing of their patient’s personal beliefs about sharing genetic risk information with family mem- bers. Nurses work closely with the individual to explore relationships with relatives to identify po- tential areas of difficulty and provide support for communication of accurate genetic information (Wiseman, Dancyger, & Michie, 2010). The fam- ily communication style may affect disclosure and sharing of genetic information. For example, a family with a disengaged communication pattern may share affection for each other but actually speak relatively infrequently with each other (McDaniel et al., 2006). For families with this style of communication and lack of closeness, sharing information about one’s personal medical history may be especially difficult (Stoffel et al., 2008). In contrast, families with an enmeshed style of family communication frequently talk with others in the family about personal health matters (McDaniel et al., 2006). Gender may influence the sharing of ge- netic information with family members. Women were noted to have more difficulty in sharing ge- netic information with older parents, brothers, or fathers (Patenaude et al., 2006). Men expressed difficulty disclosing genetic information to all fam- ily members (Gaff, Collins, Symes, & Halliday, 2005). Box 7-3 depicts an example of family com- munication of genetic information.

Parents: To Tell or Not to Tell Parents of a child with a genetic disorder take into consideration what to tell their children about the condition based on the developmental level of the child and the child’s extent of interest in knowing about the genetic condition. Thus, parents whose children had a single gene disorder described shar- ing genetic information with their children as an unfolding process that was not a one-time occur- rence but continued throughout childhood as their cognitive stage of development progressed (Gallo, Angst, Knafl, Hadley, & Smith, 2005).

Parents, usually, believe that they are the most ap- propriate people to inform their children about ge- netic risks. Still, when no current effective treatment

or cure exists, parents struggle with balancing “the right” of individuals to know about their potential genetic risks with their natural instinct as parents to spare their children from undue anxiety (Tercyak et al., 2007). In some cases, individuals delay telling other adults in the family because they worry that they will accidently say something to the child or that they may be overheard by the child (Speice, McDaniel, Rowley, & Loader, 2002).

Parents of children with genetic conditions may choose not to share information because they have concerns about school issues, obtaining health care for their children, and insurability or employability of their children. Parents worry that their child could feel different from other children because of food or activity restrictions, or visible signs of the genetic condition (Gallo, Hadley, Angst, Knafl, &

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BOX 7-3 Family Communication of Genetic Information

Brian, a 46-year-old man, is the oldest of three siblings. He is married but has no biological children. Brian was aware that his mother died of bowel cancer at the age of 38 years, and although this worried him, he hid his anxi- ety from both friends and relatives. He never discussed his mother’s death with his wife or siblings. Brian had been experiencing abdominal pain for some months when he collapsed at work one day and was taken to his local hospital emergency department. He was found to be anemic and suffering a bowel obstruction. A tumor located near the hepatic flexure of the large colon was removed successfully. Brian was informed that his family and medical history indicated that it was likely he had in- herited a mutation in an oncogene that predisposed him to bowel cancer. He was advised to share this finding with his siblings, and recommend that they seek advice and screening for themselves. Brian was reluctant to dis- cuss the issue with his siblings but did tell his wife. Brian chose not to disclose this information to his siblings. Sev- eral months later, at the encouragement of his wife, they met with the cancer nurse to discuss the situation. The cancer nurse helped Brian decide what information to share with his siblings. They created a plan for how and when to share the information. Subsequently, both Brian’s sister and brother had genetic testing. Brian’s sis- ter was found to carry the mutation. She was screened, and she worked with the nurse to devise a plan to tell her children about their possible risk when they reached 18 years of age.

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Smith, 2008). Nurses have a significant role in helping parents decide what information to share with their children about their genetic condition based on their developmental level. Another role of family nurses is helping parents determine how much information to share with outside sources, such as schools, day care, or employers, about their child’s genetic condition.

Concealing Information: Family Secrets Some families are quite open, whereas others choose to keep genetic information a secret, even from other immediate family members (Peters et al., 2005). Families choose to keep genetic information a secret for a variety of reasons. Sometimes informa- tion is kept a secret out of a desire to protect other family members. Some keep a secret because they feel shame. Still other families may choose to keep information secret because the exploration of ge- netic inheritance may reveal other personal infor- mation. For example, consider a family with four sisters who want health advice because their father has a form of familial colon cancer. In the course of obtaining the family history, the mother confides to the nurse that her husband is not the biological par- ent of the oldest daughter, and that others in the family do not know this history. In this situation, the nurse recognizes that the oldest daughter does not share the same risk for this disease as her sisters, but the nurse would not be permitted to reveal that in- formation to any family member without the mother’s permission. This family secret can create conflict for the nurse, because the lack of disclosure might mean the eldest daughter is exposed to un- necessary procedures, such as a colonoscopy (which carries a risk for morbidity). The nurse would dis- cuss the issue of risks for procedures with the mother so that the she can consider all the information in deciding to tell her daughter the family secret. The mother would have to decide if the benefits of dis- closure outweigh the distress the daughter may ex- perience by learning about her parentage.

Family Reactions to Disclosure of Genetic Information Families are unique and respond to genetic discov- eries differently. Even within the same family, fam- ily members will respond differently. Some members seek predictive testing to determine whether they have inherited the genetic condition.

Others choose not to seek testing. Some members react to genetic discoveries with grief, loss, and de- nial. The nurse’s role is to support all family mem- bers in their reactions and ultimate choices.

Children, regardless of age, may wonder if they will have the same condition as their parent. For example, this may be the case for teens who have a parent or grandparent with Huntington’s disease, an autosomal dominant condition. Guidelines do not recommend predictive testing until a teen is old enough to provide informed consent. Teens may want to protect their parents from their concerns and are reluctant to share their thoughts with their parents (Sparbel et al., 2008). Thus, nurses should offer the opportunity for them to ask questions and discuss their concerns, including offering to facili- tate a family discussion. Box 7-4 depicts a family managing decisions about teenager.

Elders in the family often are keen to contribute to genetic studies to help their offspring (Skirton,

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BOX 7-4 Working With an Adolescent About Genetic Testing

Susan is a 17-year-old young woman whose mother de- veloped breast cancer at age 42 and had to have a dou- ble mastectomy. She is now recovering from her surgery and doing well. Susan’s maternal grandmother and one of her maternal aunts died from breast cancer in their forties. Susan’s mother chose to have genetic testing to learn about the possible genetic cause of her breast cancer. The test results revealed that she has a BRCA1 gene mutation, which significantly increases a woman’s lifetime risk of de- veloping breast cancer. At her annual health care appoint- ment Susan tells the nurse about her family history of breast cancer and that her mother has a BRCA1 gene mu- tation. Susan says that she would like to know what her risk is for inheriting this gene and that she would like to have the genetic testing to find out if she carries the same BRCA1 gene as her mother. She says that she is worried about her younger sister too. She tells the nurse that she does not want to worry her mother or family by talking with them about her concerns. The nurse informs Susan that she is free to express her concerns with her and her physician and that they can talk with her about how best to talk with her mother and express her concerns. She also lets Susan know that when she is 18 she will be old enough to provide informed consent to have genetic test- ing for the BRCA1 mutation that her mother has. She rec- ommends that when she is 18, she consider genetic counseling with a genetic specialist to learn more about her risk and the BRCA1 genetic testing.

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Frazier, Calvin, & Cohen, 2006) and serve as an in- formation source of family history. Advances in ge- nomics will make susceptibility testing for common diseases of middle and old age (such as coronary ar- tery disease or cancer) more common.

Family members possess beliefs about their own risks and who in the family will develop a genetic condition. These beliefs are termed preselection (Tercyak, 2010). Preselection beliefs are often based on the family’s previous experience. For example, if only male relatives have been affected by an autoso- mal dominant condition that could affect either sex, female members in the family may believe they are not at risk. Sometimes preselection beliefs are based on the fact that the person thought to have inherited the condition physically resembles the affected par- ent or shares a physical characteristic (such as hair color) with other affected relatives. A preselection belief may influence the person’s self-image and overall functioning. For example, those who believe they will develop a condition may make different ca- reer choices, avoid long-term relationships, or de- cide not to have children. Box 7-5 depicts a case study that demonstrates preselection beliefs.

DECISION TO HAVE GENETIC TESTING

In some circumstances, family members may want to know the likelihood that they will develop a condi- tion in the future, which is referred to as either pre- dictive or presymptomatic testing. Typically the physical risk for undergoing genetic testing is minimal, but not so for the emotional risk. The test results may have a significant effect on a person emotionally, in- fluence medical decisions, and result in discrimina- tion. Undergoing genetic predictive testing requires nurses to work with clients so that they make this de- cision in a way that meets their specific needs, alert to the nonphysical risks. Nurses involved with these families should be able to identify the sources of emotional distress and offer effective strategies to help mediate distress, make informed decisions about medical interventions, and handle possible discrimi- nation (Williams et al., 2009).

Emotional Health Family members seek or avoid genetic testing for a variety of reasons. Some elect to know whether or not they carry a mutation so they can reduce

their fear of the unknown, or make life choices, such as having children. Some people decide not to have predictive testing because they believe this knowledge would increase their level of anxiety and would prompt a constant watch for developing symptoms (Soltysiak, Gardiner, & Skirton, 2008). Test results mean different things in different sit- uations, which makes these decisions to undergo testing even more complex and multifaceted. For example, a positive test for a BRCA1 or BRCA2 breast cancer mutation does not mean the individ- ual has a 100% chance of developing breast cancer, so taking precautionary measures requires weigh- ing costs and benefits. In other situations, such as in the case of Huntington’s disease, if an individual carries the autosomal dominant condition, he will develop the disease. Some choose not to be tested for fear that they would lose hope.

Even adjustment to a negative result—meaning that a person does not have the genetic pattern of

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BOX 7-5 Preselection Beliefs

John is a 21-year-old young man who has recently grad- uated from college and is trying to decide what career he wants to pursue. John has a family history of Hunting- ton’s disease (HD) on his mother’s side. His mother’s brother and her father have both passed away from HD. His mother, age 45, is currently in good health. John is very worried that he will develop HD because it is in his mother’s family. John makes an appointment with his health care provider so that he can talk with him about his concerns. As the nurse is taking his vital signs, John tells her about his concerns that he will develop HD. He says that he doesn’t know if his mother has it and he is worried because it seems to be in the males of the fam- ily, and he looks like his uncle who died from HD. John says that he would like to go to medical school but he is scared that he will develop HD when he is young and it will greatly affect his career. He also tells the nurse that he has a girlfriend to whom he is very attached, but he is afraid to consider getting married because he does not want to put her through the experience of losing him to HD. He says that he has not even told her about his family history. The nurse tells John that she understands his concerns and encourages John to talk with his doctor about how he can learn more about his risk for HD. She tells him that he could consider having genetic counsel- ing to talk further about his risks and available genetic testing for HD to learn more. John thanks her for her support and suggestions and says that he will surely talk with his doctor further about his concerns and options.

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the disease—can be difficult. Some people who find that they are not at risk of developing a genetic condition experience “survivor guilt,” which can be described as a sense of self-blame or remorse felt by a person who, in this case, will not develop a condition that others in the family will develop.

Evidence exists that when individuals have a ge- netic test that indicates that they will develop a condition, other family members may rely on them less than previously, in an emotional sense. These individuals experience feelings of loss of place in the family well before developing disease symp- toms (Williams & Sobel, 2006). Some experience a deep sense of grief and loss of a potential future.

Medical Decisions Physicians and nurse practitioners are in an excel- lent position to work closely with clients in making medical decisions about their health based on the individual’s genetic and genomic information. These health care providers have the ability to re- fine and personalize medical care that is based on the client’s genetic makeup. For example, there is an increased probability that treatment outcomes will result in fewer adverse effects from medica- tions, such as pain management being determined on the basis of whether a client is a known fast me- tabolizer or slow to metabolize certain kinds of drugs. But just because there are many tests avail- able does not mean that the best option is for the client to have genetic testing done. Advanced prac- tice nurses need to work closely with the individual and family in deciding to have genetic testing that would include what the test would show, how spe- cific the results might or might not be, and explore what options are possible based on the outcome of the testing.

After conferring with the health care provider, some clients may not choose to have genetic test- ing at that time. Instead, these clients may elect to undergo regular checkups and screenings, such as more frequent mammograms. In contrast, when a person has genetic testing and tests positive for a specific disease, a cascade of decisions then befalls that person, including and involving preventive or prophylactic treatments, degrees of treatment, risks of treatment, and benefits of treatment. For example, a woman may decide to undergo surgery, such as sterilization, so as to not pass on to off- spring a condition such as cystic fibrosis or sickle

cell anemia; or someone with positive results for BRCA1 breast cancer mutation may elect to have a bilateral mastectomy.

Discrimination Even though there is little evidence that genetic dis- crimination is a current problem (Feldman, 2012), many individuals choose not to undergo genetic testing because they fear discrimination. For exam- ple, a person may have concerns that she may be by- passed for promotion if it was known she tested positive for a medical condition. The Genetic In- formation Nondiscrimination Act (GINA) of 2008 protects individuals from discrimination initiated by an employer or health insurance company.

Under GINA, insurers may not use genetic in- formation to set or adjust premiums, deny cover- age, or impose preexisting conditions, and they may not require any genetic testing. Unfortunately, the GINA law does not apply to employers with less than 15 employees and it does not include pro- tection against discrimination when an individual seeks to obtain life insurance, short-term disability insurance, or long-term care insurance. GINA does not protect members of the military, veterans, fed- eral employees, or the Indian Health Service. Each of these sectors of society is protected against dis- crimination by other laws and statutes.

Under GINA, an employer may not make any decisions about hiring, firing, promoting or pay or assignment based on any genetic information. The Patient Protection and Affordable Care Act of 2010 also prohibits denial of insurance coverage based on genetic information. The GINA law is signifi- cantly more stringent and specific in preventing discrimination by employers and health care insur- ance agencies (Feldman, 2012), however, because it defines genetic information as including medical history.

ROLES OF THE NURSE

When there exists a genetic risk, nurses, together with others on the health care team, have two major responsibilities: (1) to help families under- stand that the risk is present, and (2) to help family members make decisions about management or surveillance. In every case, the nurse’s role is to support families to make decisions that are most

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appropriate for their particular circumstances, cul- tures, and beliefs (International Society of Nurses in Genetics, 2010). This section suggests ways that nurses should review their own beliefs and values when working with families. It covers how to con- duct a risk assessment and genetic family history, the importance of working with a couple in precon- ception education, and the role of nurses as genetic information managers.

Personal Values: A Potential Conflict Nurses must become aware of cultural values that differ from their own family cultural values. Cul- tural awareness allows nurses to tailor their prac- tices to meet the needs of the family. Box 7-6 demonstrates how a nurse who does not under- stand a family’s cultural values could contribute to a poor outcome.

It is a difficult emotional situation when nurses’ personal values conflict with those of families. One example of this type of conflict occurs when the nurse personally does not agree with the family de- cisions relative to the potential risks of having a child who is genetically predisposed to having a ter- minal disease. It is unethical, however, for nurses to

try to influence the decisions of the family or family members because of their own personal views.

Another type of conflict occurs when opinions within the family vary. In this type of situation, the role of the nurse is to facilitate family members ex- pressing their views. In clinical genetics, more than one family member may be involved in decision making, and nurses should respect each person’s autonomy.

Conducting a Genetic Family History All nurses should be able to conduct a risk assess- ment that includes obtaining a genetic family his- tory (Consensus Panel, 2008). As described in Chapter 4, a genogram collects useful information about family structure and relationships. Nurses can use a three-generation family pedigree to pro- vide information about a potential genetic inheri- tance pattern and recurrence risks. The genetic risk assessment enables nurses to identify those family members who may be at risk for disorders with a genetic component so that they can be provided appropriate lifestyle advice, screening recommen- dations, and possibly reproductive options. Infor- mation on standardized pedigree symbols and the construction of a genetic family pedigree is avail- able to the public through the U.S. Surgeon Gen- eral’s Family History Initiative (U.S. Department of Health and Human Services, 2005), and re- sources are available through the National Genet- ics Education and Development Centre (2008).

The purpose of drawing the family tree using a genetic family pedigree is to enable medical infor- mation to be presented in context of the family structure. Obtaining a genetic family history in this systematic manner helps ensure inclusion of all critical information in the analysis (Skirton, Patch, & Williams, 2005). The process of obtaining a de- tailed health history and causes of family deaths is as follows:

■ Start with the client ■ Client’s immediate family members ■ Client’s mother’s side of the family ■ Client’s father’s side of the family ■ Relatives who have died, including their

cause of death

Relatives who are not biologically related, such as those joining the family through adoption or marriage, should also be noted with the appropriate

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BOX 7-6 Cultural Awareness

Kate is a genetic nurse working in a pediatric clinic for children with inherited metabolic conditions. She was scheduled to see a family whose son had a rare inher- ited metabolic disorder to discuss the parents’ future re- productive options, including prenatal diagnosis. When the family entered the room, she noted with surprise that the parents and the child were accompanied by both sets of grandparents. She quickly arranged for more chairs to be brought into the room. Kate was quite dis- concerted to find that the paternal grandfather repeat- edly answered questions that were directed to the parents, and she continued to address the parents. Even- tually, the child’s father explained that, according to his culture, the oldest male relative on the father’s side was responsible for making the decision that would affect the family; therefore, it was critical that the grandfather be fully involved in all discussions. While reflecting with her mentor, Kate realized that, in the future, she would ask the family at the beginning of the family conference to share any specific cultural needs she should know about in order to help meet their family needs.

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pedigree symbol. The reason that relatives who are not biologically related are noted in a pedigree with a special symbol is to identify them as family mem- bers who are not at risk for passing on or inheriting harmful genes from the family they have joined.

Obtaining a family genetic history is a nursing skill that requires technical expertise and knowl- edge of what needs to be asked, as well as sensi- tivity to personal or distressing topics and an awareness of the ethical issues involved. Box 7-7 outlines the components of a genetic nursing as- sessment. Information given by patients is con- sidered part of their personal health record and

should be treated as personal and private infor- mation (U.S. Department of Health and Human Services, 1996, 2005).

Drawing the genetic family pedigree or family tree for at least three generations often provides im- portant data about the potential inheritance pattern. When a condition affects both male and female members, and is present in more than one genera- tion, a dominant condition is suspected (Fig. 7-1). Conditions that affect mainly male relatives, with no evidence of male-to-male transmission, increase sus- picion of an X-linked recessive condition (Fig. 7-2). When more than one child is affected of only one set of parents, it may be evidence of an autosomal re- cessive condition (Fig. 7-3).

Nurses should not assume that a condition is ge- netic merely because more than one family member has it. Family members who are subject to similar environmental influences may have similar condi- tions without a genetic basis. One such example is a family with a strong history of lung cancer. Bob, a 62-year-old man, was affected by lung cancer. His two brothers and father all died of lung cancer. Bob expressed deep concern about having a genetic pre- disposition that he could pass on to his grandsons. The family history revealed that Bob’s father and every male member of his family worked under- ground as coal miners from the age of 14 years. In addition, they all smoked at least 20 cigarettes a day from when they were teenagers. None of the women smoked, nor did they work in the mines, and none developed lung cancer. In this family, the cancer could likely be attributed to environmental rather than inherited causes.

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BOX 7-7 Genetic/Genomic Nursing Assessment

A genetic nursing assessment includes the following information:

■ Three-generation pedigree using standardized symbols ■ Health history of each family member ■ Reproductive history ■ Ethnic background of family members (as described by

the family) ■ Documentation of variations in growth and develop-

ment of family members ■ Individual member and family understanding of causes

of health problems that occur in more than one family member

■ Identification of questions family members have about potential genetic risk factors in the family

■ Identification of communication of genetic health infor- mation within the family

Person with autosomal dominant condition

FIGURE 7-1 Pedigree of autosomal dominant genetic condition.

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Preconception Assessment and Education Preconception counseling is an intervention that includes providing information and support to in- dividuals before a pregnancy to promote health and reduce risks (Walfisch & Koren, 2011). It is ideal when a family has the opportunity to discuss diffi- cult genetic decisions before a pregnancy. During a pregnancy, the emotional ties to the existing fetus

may complicate the decision-making process for the parents. Preconception counseling enables a couple to explore options without time pressures.

One aspect of preconception education is con- ducting a health risk profile that includes family history, prescription drug use, ethnic background, occupational and household exposures, diet, spe- cific genetic disorders, and habits such as smoking, alcohol, or street drug use. When nurses identify information that may present a health risk in future

Genomics and Family Nursing Across the Life Span 199

FIGURE 7-2 Pedigree of X-linked recessive condition.

Heterozygote (carrier) of X-linked recessive condition

Male with X-linked recessive condition

Carrier (heterozygote) of autosomal recessive disorder

Person affected with autosomal recessive disorder

FIGURE 7-3 Pedigree of autosomal recessive genetic condition.

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offspring, they should explore whether the woman or family wants a more extensive evaluation from a genetic specialist. Box 7-8 provides an example of preconception education for a couple concerned about genetic risks for offspring.

In addition to identifying inherited conditions, preconception counseling includes education re- garding other risk factors that could change the outcome of a pregnancy. During preconception counseling, family nurses explain the importance, for instance, of taking an adequate amount of folic acid, one of the B vitamins, which is known to de- crease the number of babies born with neural tube defects (NTDs) (Centers for Disease Control and Prevention, 2006). Box 7-9 provides more infor- mation about NTDs.

Risk Assessment in Adult-Onset Diseases Genetic history taking is important in the adult population to assess for risk factors that are perti- nent to common diseases, such as cancer and coro- nary heart disease. The risk assessment is based on the genetic family pedigree, but additional genetic

or biochemical testing may be used to clarify the potential risk to each individual. To ensure pri- vacy, health care providers must obtain consent from all living relatives before accessing their medical records and confirming relevant medical history. Family members who are seeking infor- mation are advised of their risks and options for clinical screening and follow-up. One example is the assessment of risk for cancer when there is a strong history of cancer in the family (Gammon, Kohlmann, & Burt, 2007). Individuals who find through counseling and testing that they have an increased risk for cancer may experience psy- chological difficulties (Kenen, Ardern-Jones, & Eeles, 2006). Nurses must explore feelings of grief and anxiety about the future, as well as be- liefs about the inheritance pattern. Providing explanations enables families to understand the information and helps them learn possible op- tions to reduce the risk for cancer in their family members.

200 Families Across the Health Continuum

BOX 7-8 Preconception Education

Jay and Sara are college students who are planning to be married. Both are of Ashkenazi Jewish ancestry. Although both have heard about Tay-Sachs disease, and the avail- ability of carrier testing, neither has had the carrier test. When Sara visited the student health office, she talked with the nurse about her fears that she may not be able to have healthy babies. She knew that Tay-Sachs disease, a degenerative neurological condition, is more common in Ashkenazi Jewish families, and that no treatment will alter the course of the disease. Sara was interested in learning more about the carrier test. The nurse offered to refer Sara to a genetics specialist, who would help the couple explore the following childbearing options:

■ Decide to have or not have biological children ■ Have a pregnancy with no form of genetic testing ■ Have a preimplantation genetic diagnosis ■ Have a pregnancy and have a prenatal genetic diagno-

sis with an option to terminate an affected fetus ■ Have a pregnancy using a donor gamete from a non-

carrier donor ■ Adopt a child

BOX 7-9 Folic Acid Recommendations to Prevent Neural Tube Defects

In 1992, the U.S. Public Health Service recommended that all women capable of becoming pregnant take 0.4 mg/400 g folic acid daily, which is the amount of folic acid in most multivitamins. Although a daily intake of folic acid does not completely rule out the possibility that an infant will have neural tube defects (NTDs), stud- ies have reported an 11% to 20% reduction in cases of anencephaly and a 21% to 34% reduction in cases of spina bifida since this recommendation was issued (Mosley et al., 2009).

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Increasingly, women with a family history of breast or ovarian cancer, or both, are seeking to re- duce their risks for these conditions. This is espe- cially true for women whose own mothers died at a relatively young age from breast or ovarian can- cers (van Oostrom et al., 2006). All women have a risk for breast cancer (a lifetime risk of about 1 in 11 in the U.S. population) and may be offered mammography screening according to the stan- dards of care or regional health policy (National Institute for Clinical Excellence, 2006). For women with a genetic family history that is consistent with familial breast and ovarian cancer, genetic and fa- milial cancer specialists should discuss earlier and more frequent screening.

With appropriate treatment, some health prob- lems with a major genetic component may im- prove or at least remain stable. But many genetic conditions lead to increasing loss of health and function throughout the person’s life span. These genetic conditions require more and more com- plex care from both health care providers and the family. In the chronic phase of a genetic condi- tion, individuals and the family not only come to terms with the permanent changes that come with the onset of illness symptoms (Biesecker & Erby, 2008; Truitt, Biesecker, Capone, Bailey, & Erby, 2012), but also must adapt their family routines and roles, and locate needed resources to meet changing health care needs.

Providing Information and Resources An essential nursing competence includes the need for nurses to be able to identify resources that are useful, informative, and reliable for pa- tients and families. Knowledge of genetics is rap- idly changing, and Web-based resources may

provide the most current information. Families value the recommendations of health profession- als on suitable resources of information (Skirton & Barr, 2008). It is the role of nurses to ensure that recommended Web sites include relevant and evidence-based information. Patients and families have a need for psychosocial and medical infor- mation about genetics; therefore, any information that is prepared for distribution should include material on both types of needs (Lewis, Mehta, Kent, Skirton, & Coviello, 2007).

Evaluation of Genomic and Genetic Nursing Interventions Genomics and genetics are relatively new fields in nursing, but some work has assessed the value of genetic services, including nursing input, for patients and their families. Researchers con- ducted a study to define nursing outcomes rela- tive to genetics in both the United States and the United Kingdom (Williams et al., 2001). The views of nurses indicated that enhancing patient knowledge of the disease and the genetic risks as- sociated with the disease were important aspects of care. Nurses also believed that offering families psychosocial support was an integral part of their practice. In Skirton’s study (2001), patients re- ported that they gained peace of mind from the care they received, and that increasing their knowledge about the condition, being treated as an individual, and having a warm relationship with the health professionals caring for them were important to the overall outcome of the consultation. Nurses should aim not only to be knowledgeable about genomics but also provide individualized care, and address the needs and specific agendas of each family. Box 7-10 provides

Genomics and Family Nursing Across the Life Span 201

BOX 7-10 Evaluation of Nursing Intervention

Fiona is a 5-year-old child who is attending kindergarten. Her teacher is concerned that she does not appear to be progressing as well as expected, and asks the school nurse, Cindy, to check her hearing. Cindy arranges for Fiona’s par- ents to bring her for a hearing test. She asks Fiona’s mother about her medical history; the mother says she has always been a well child and has not had any ear infections but has developed some “funny patches” on her skin. They

have not caused a problem, but the mother has wondered what they are and if they could turn cancerous. Cindy checks these and notes that they seem to be café-au-lait patches—small, pale brown pigmented areas of the skin. She reassures the parents that the café-au-lait patches are not harmful but could indicate an underlying cause for Fiona’s slight learning problems. She draws a genetic family pedigree or family tree (Fig. 7-4) and notes that Fiona’s

(continued)

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an example of a nurse’s evaluation of interventions with a family whose child has a genetic condition.

Although it is not possible for health profession- als to have current knowledge about every condi- tion, nurses exhibit competence in this area by having an awareness of their limitations, being open to discussion, finding appropriate resources, and referring to specialists when required. It is es- sential that nurses working in all types of settings be prepared with an adequate knowledge base to explain the basis and implications of genetics and genomics.

SUMMARY

■ Families share both social and biological ties. Identifying biological risk factors is an essen- tial component of professional nursing prac- tice, and a nursing assessment is incomplete without identifying biological factors that may place individuals or their offspring at risk for genetic conditions.

■ Nurses providing care to families across all health care settings and throughout the life

202 Families Across the Health Continuum

BOX 7-10 Evaluation of Nursing Intervention—cont’d

father and his mother (Fiona’s paternal grandmother) had unusual skin lumps, but no other medical problems.

When the pediatrician sees the family, she measures Fiona’s head circumference and examines her skin. She confirms that the skin marks are café-au-lait patches and that Fiona has eight of them. Fiona’s head circumference is larger than average, on the 97th percentile for her age. A diagnosis of neurofibromatosis type 1 is made. The pe- diatrician explains that this is a genetic condition, but that it could have arisen for the first time in Fiona or may have been inherited from one of her parents. Neither parent is aware of the condition in the family. The pediatrician ex- amines both parents and finds that Fiona’s father has a large head circumference and has several raised lumps on the skin, called neurofibromas. He tells the pediatrician he needed extra help with math at school, but he finished college and works teaching French. He has never been

concerned about the lumps because his own mother had dozens of them, and apart from having one removed be- cause her shoe was rubbing against it, they did not cause her a problem.

The pediatrician is aware that children with this condi- tion may have learning problems. She recommends that Fiona be evaluated to identify whether Fiona would bene- fit from extra help at school. As high blood pressure and malignancies can occur as a result of the condition, she also makes arrangements for Fiona and her father to have an annual checkup. Fiona’s brother, James (9 years old), is also examined but has no signs of the condition and does not require any further assessment.

When Cindy is informed of the diagnosis, she helps the family to identify reliable sources of information on the Web and provides Fiona’s parents with information about neurofibromatosis organizations.

FIGURE 7-4 Genetic pedigree: Fiona’s family tree.

Multiple skin lumps Edna 64 yr

Died at 72 yr of stroke

Multiple skin lumps, needs help with math at school

Well

Appendectomy, gets migraines

Learning problems, multiple café-au-lait patches

Maria 36 yr

Jim 36 yr

James 9 yr

Fiona 5 yr

Matthew

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span must maintain current knowledge of ge- nomic aspects of health and risks for illness to assist families in obtaining information and further evaluation if needed.

■ Nurses work with families on assessment, identification of issues influencing family members’ health, facilitating appropriate re- ferrals, and evaluating the effect of these ac- tivities on the family’s health and well-being.

■ Family values, beliefs, and patterns of com- munication are integral components of how families cope with and respond to family members with medical conditions that have a genetic component.

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Mosley, B. S., Cleves, M. A., Siega-Riz, A. M., Shaw, G. M., Canfield, M. A., Waller, D. K., . . ., & Hobbs, C. A. (2009). Neural tube defects and maternal folate intake among preg- nancies conceived after folic acid fortification in the United States. American Journal of Epidemiology, 169(1), 9–17.

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Skirton, H., & Barr, O. (2008). Antenatal screening: Informed choice and parental consent. Retrieved from http://www.learningdisabilities.org.uk/content/assets/pdf/ publications/ANSPAC_Briefing_paper_FINAL_Approved_ (2).pdf?view=Standard

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205

Family Health Promotion

c h a p t e r 8

Yeoun Soo Kim-Godwin, PhD, MPH, RN

Perri J. Bomar, PhD, RN

C r i t i c a l C o n c e p t s

■ Family health promotion refers to activities that families engage in to strengthen the family unit and increase family unity and quality of family life.

■ Health promotion is learned within families, and patterns of health behaviors are formed and passed on to the next generation.

■ A major task of the family is to teach health maintenance and health promotion.

■ The role of the family nurse is to help families attain, maintain, and regain the highest level of family health possible.

■ Family health promotion is the by-product of family interactions with factors outside the home and internal family processes: microsystem, mesosystem, exosystem, and macrosystem.

■ Positive, reinforcing interaction between family members leads to a healthier family lifestyle.

■ Different cultures define and value health, health promotion, and disease prevention differently. Clients may not understand or respond to the family nurses’ suggestions for health promotion because the suggestions conflict with their health beliefs and values.

■ Family health promotion should become a regular part of taking a family history and a routine aspect of nursing care.

■ A primary goal of nursing care for families is empowering family members to work together to attain and maintain family health; therefore, family health promotion should focus on strengths, competencies, and resources.

Fostering the health of the family as a unit and encouraging families to value and incorporate health promotion into their lifestyles are essential components of family nursing practice. Family health promotion refers to the activities that fami- lies engage in to strengthen the family as a unit. Family health promotion is defined as achieving maximum family well-being throughout the fam- ily life course and includes the biological, emo- tional, physical, and spiritual realms for family members and the family unit (Fiese & Everhart,

2011; Kim-Godwin & Bomar, 2010). Health pro- motion is learned within families, and patterns of health behaviors are formed and passed on to the next generation. Families are primarily responsi- ble for providing health and illness care, being a role model, teaching self-care and wellness be- haviors, providing for care of members across their life course and during varied family transi- tions, and supporting each other during health- promoting activities and acute and chronic illnesses. A major task of families is to make

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efforts toward health maintenance and health promotion, regardless of age. For families, main- taining health and well-being is a collective effort whereby routines are established, relationships are formed that foster health in others, and qual- ity of life is promoted when better health is expe- rienced by multiple members of the household (Fiese & Everhart, 2011).

One of the major functions of the family is to provide health care for its members, including how to promote healthful lifestyles among the family members and the way the family functions together as a whole.

The purpose of this chapter is to introduce the concepts of family health and family health promo- tion. The chapter presents models to represent these concepts, including the Model of Family Health, Family Health Model, McMaster Model of Family Functioning, Developmental Model of Health and Nursing, Family Health Promotion Model, and Model of the Health-Promoting Fam- ily. The chapter also examines internal and external factors through a lens of the bioecological systems theory that influence family health promotion, family nursing intervention strategies for health promotion, and two family case studies demon- strating how different theoretical approaches can be used for assessing and intervening in the family for health promotion.

WHAT IS FAMILY HEALTH?

Definitions of family health have evolved from anthropological, biopsychosocial, developmental, family science, cultural, and nursing paradigms. The concept of family health is often used inter- changeably with the terms family functioning, healthy families, resilient families, and balanced families (Alderfer, 2011; Kaakinen & Birenbaum, 2012; Walsh, 2006, 2011a). Family scientists define healthy families as resilient (Black & Lobo, 2008), and as possessing a balance of cohesion and adapt- ability that is facilitated by good communication (Smith, Freeman, & Zabriskie, 2009). According to Black and Lobo (2008), family resilience factors include a positive outlook, spirituality, family member accord, flexibility, communication, finan- cial management, time together, mutual recre- ational interests, routines and rituals, and social support (p. 38).

Family therapy definitions of family health often emphasize optimal family functioning and freedom from psychopathology (Goldenberg & Goldenberg, 2007; McGoldrick, Gerson, & Petry, 2008). Fur- thermore, within the developmental framework, healthy families complete developmental tasks at appropriate times (Carter & McGoldrick, 2005; Duval & Miller, 1985; McGoldrick, Carter, & Garcia-Preto, 2011).

Other definitions of family health focus on the totality, or gestalt, of the family’s existence, and in- clude the internal and external environment of the family. The health of a family is best described in interactional traits for optimal growth, function- ing, and well-being of the family as a whole (Black & Lobo, 2008). A holistic definition of family health encompasses all aspects of family life, including in- teraction and health care function. A healthy fam- ily has a sense of well-being. Different aspects of family functioning that nurses can assess or help promote to encourage overall family health care functions include family nutrition, recreation, communication, sleep and rest patterns, problem solving, sexuality, use of time and space, coping with stress, hygiene and safety, spirituality, illness care, health promotion and protection, and emo- tional health of family members (Alderfer, 2011; Novilla, 2011).

206 Families Across the Health Continuum

For the purposes of this chapter, family health is a holistic, dynamic, and complex state. Family health is more than the absence of disease in an individual family member or the absence of

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dysfunction in family dynamics. Rather, it is the complex process of negotiating and solving day-to-day family life events and crises, and pro- viding for a quality life for its members (Novilla, 2011). Table 8-1 lists the characteristics of healthy families, illustrating how families can promote health.

COMMON THEORETICAL PERSPECTIVES

Many models and theories are applicable to family health and family health promotion. This section

introduces a variety of models or views of family health and family health promotion followed by selected models:

■ Family Health Model ■ McMaster Model of Family Functioning ■ Developmental Model of Health and

Nursing ■ Family Health Promotion Model ■ Model of the Health-Promoting Family

Models of Family Health Building on Smith’s (1983) models of health and illness, Loveland-Cherry and Bomar (2004) suggest

Family Health Promotion 207

Table 8-1 Characteristics of Healthy Family

Unity Commitment

Has a sense of trust traditions.

Teaches respect for others.

Exhibits a sense of shared responsibility.

Affirms and supports all of its members.

Flexibility Ability to Deal With Stress

Displays adaptability.

Sees crises as a challenge and opportunity.

Shows openness to change.

Grows together in crisis.

Seeks help with problems.

Opens its boundaries to admit and seek help.

Communication Positive Communication

Communicates well and listens to all members.

Fosters family table time and conversation.

Shares feelings.

Displays nonblaming attitudes.

Is able to compromise and disagree.

Agrees to disagree.

Time Together

Shares family rituals and traditions.

Enjoys each other’s company.

Shares leisure time together.

Shares simple and quality time.

Spiritual Well-Being

Encourages hope.

Shares faith and religious core.

Teaches compassion for others.

Teaches ethical values.

Respects the privacy of one another.

Appreciation and Affection

Cares for each other.

Exhibits a sense of humor.

Maintains friendship.

Respects individuality.

Has a spirit of playfulness/humor.

Interacts with each other has a balance in the interactions.

Source: Modified from Kaakinen, J. R., Gedaly-Duff, V., Coehlo, D. P., & Hanson, S. M. H. (Eds.). (2010). Family health care nursing: Theory, practice and research (4th ed.). Philadelphia, PA: F. A. Davis; Olson, D. H. L., & Defrain, J. (2003). Marriage and the family: Diversity and strengths (4th ed.). New York: McGraw-Hill; and Psychological Studies Institute. (2004, September 15). New study identifies specific behaviors linked to family health. Physician Law Weekly. Retrieved from http://www.newsrx.com/newsletters/Mental-Health-Law-Weekly/2004-08- 18/091320043331272MHL.html

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that there are four views toward or philosophies of family health:

1. Family Health—Clinical Model. The family unit is viewed from this perspective. The family is healthy if its members are free of physical, mental, and family dysfunction.

2. Family Health—Role-Performance Model. This view of family health is based on the idea that family health is the ability of family members to perform their routine roles and achieve developmental tasks.

3. Family Health—Adaptive Model. In this view, families are healthy if they have the ability to change and grow and possess the capacity to rebound quickly after a crisis.

4. Family Health—Eudaimonistic Model. Profes- sionals who use this view as their philoso- phy of practice focus on a holistic approach to family care to maximize the family’s well-being and self-actualization in order to support the entire family and individual members in reaching their maximum health potential.

Table 8-2 reveals how the four models of family health define “family health.” Rather than being separate, Smith (1983) suggests that the four views can be viewed as a continuum with the person (or family), going back and forth depending on the cir- cumstances and life events. According to Loveland- Cherry and Bomar (2004), these family health models (views) are useful in three ways: (1) they provide frameworks for understanding the level of

health that families are experiencing; (2) they help design interventions to assist families in maintain- ing or regaining good health, or in coping with illness; and (3) the specific model of family health can facilitate organization of the family nursing literature and to categorize family research.

Family Health Model Based on family health studies with Appalachian families (Denham 1999a, 1999b, 1999c), and a broad base of literature and existing research about family health, Denham (2003a) has proposed the Family Health Model. Family health is viewed as a process over time of family members’ interactions and health-related behaviors. Denham (2011) de- fines family health as a complex phenomenon com- prised of diverse members, systems, interactions, relationships, and processes that hold the potential to maximize well-being, the household production of health, and contextual resources (p. 900). The model emphasizes the biophysical, holistic, and environmental factors that influence health.

In her Family Health Model, Denham (2003a, 2003b) suggests that family health routines offer the means of connecting with health promotion. Family routines are behavior patterns related to events, occasions, or situations that are repeated with regularity and consistency. Family routines have been identified as key structural aspects of family health that can be assessed by nurses, pro- vide a focus for family interventions, and have potential for measuring health outcomes (2003a). Routines supply information about behaviors and

208 Families Across the Health Continuum

Table 8-2 Models of Family Health

Model Definition of Family Health

Clinical model

Role-performance model

Adaptive model

Eudaimonistic model

Lack of evidence of physical, mental, social disease or deterioration, or dysfunction of the family system.

Ability of the family system to conduct family functions effectively and to achieve family developmental tasks.

Family patterns of interaction with the environment characterized by flexible, effective adaptation or ability to change and grow.

The most comprehensive view of health, a holistic view. It includes the ongoing provision of resources, guidance, and support for realization of the family’s maximum well-being, self- actualization, and potential throughout the family life span.

Source: Modified from Bomar, P. J. (2004). Introduction to family health nursing and promoting family health. In P. J. Bomar (Ed.), Promoting health in families: Applying family research and theory to nursing practice (3rd ed., pp. 3–37). Philadelphia, PA: WB Saunders.

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their predictability, member interactions, family identity, and specific ways families live. Denham (2003a) makes the following propositions about family health routines (p. 191):

■ Families that tend toward moderation in family health routines are healthier than families who are highly ritualized and those who lack rituals.

■ Families with clearer ideas about their goals are more likely to accommodate health needs effectively through their family routines than families who are less certain about their goals.

■ Families and individuals are more likely to accommodate changes related to health concerns when family routines are sup- ported over time by embedded contextual systems than families whose routines are not supported.

■ Families with routines that support individ- ual health care needs are more likely to achieve positive care outcomes in an indi- vidual with health concerns than families who do not have routines that support the needs of family members with health concerns.

■ Children who are taught routines in the home and are supported by the embedded context are more likely to practice health routines in the home than those not sup- ported by the embedded context. Embedded context is defined as “the ecological environ- ments and nested relationships that affect the family health over the life course” (p. 277).

Denham lists the diverse types of routines, in- cluding individual routine, family routine, family health routine, family ritual, family tradition, and family celebration (Denham, 2003a, 2011). Health routines are described as interactions affected by biophysical, developmental, interactional, psychoso- cial, spiritual, and contextual realms, with implica- tions for the health and well-being of members and family as a whole. Kushner (2007) has said that health routines are the means by which family mem- bers deal with everyday health needs in the house- hold context, the way that they teach children health behaviors, and the way they support stress manage- ment. In the Family Health Model, Denham (2003a) identifies six categories of family health routines. See Table 8-3.

McMaster Model of Family Functioning The health of a family is best described as the in- teractional traits of optimal growth, functioning, and well-being of the family as a whole (Black & Lobo, 2008). The McMaster Model of Family Functioning (MMFF) identifies the elements of the family group and the patterns of transactions among family members that have been found to distinguish between healthy and unhealthy fami- lies. The model specifies six domains of functioning proposed to have the greatest impact on the ability of the family to meet basic needs (needs such as food, money, transportation, and shelter), develop- mental needs of family members and the family unit, and emerging needs (“crises that arise for the family such as job loss, illness, etc.”) (Alderfer, 2011, p. 82):

■ Problem solving ■ Communication ■ Roles ■ Affective responsiveness ■ Affective involvement ■ Behavioral control

The McMaster Clinical Rating Scale (MCRS) and Family Assessment Device (FAD) have been developed to assess family health across the six dimensions described by the MMFF. The MCRS is used by clinicians well trained in the McMaster Model, and the FAD is a self-report measure that can be completed by families and scored on each of the MMFF dimensions (Alderfer, 2011). Whereas the MCRS can be rated by observers during a semi- structured family interview, the FAD was designed to be completed by family members and their scores averaged. The FAD is widely used and has been translated into approximately 20 different languages (Alderfer, 2011).

Models for Family Health Promotion A great need exists to encourage health promotion of the whole family unit because health behaviors, values, and patterns are learned within a family context. Family health promotion activities are cru- cial both during wellness and during illness of a family member. Family health promotion increases family unity and quality of life. According to Pender, Murdaugh, and Parsons (2011), family health pro- motion involves a family’s lifelong efforts to nur- ture its members, to maintain family cohesion, and

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210 Families Across the Health Continuum

Table 8-3 Types of Family Health Routines

Family Health Routine Aspects of the Routine Description of the Routines

Self-care routines

Safety and prevention

Mental health behaviors

Family care

Illness care

Member caregiving

Dietary

Hygiene

Sleep-rest

Physical activity and exercise

Gender and sexuality

Health protection

Disease prevention

Smoking

Abuse and violence

Alcohol and substance abuse

Self-esteem

Personal integrity

Work and play

Stress levels

Family fun (e.g., relaxation, activities, hobbies, vacations)

Celebrations, traditions, special events

Spiritual and religious practices

Pets

Sense of humor

Decision making related to medical consultation

Use of health care services

Follow-up with prescribed medical regimens

Health teaching (i.e., health, prevention, illness, disease)

Member roles and responsibilities

Providing illness care

Support of member actions

These routines involve patterned behaviors related to usual activities of daily living experienced across the life course.

These routines pertain to health protection, disease prevention, avoidance and partici- pation in high-risk behaviors, and effort to prevent unintended injury across the life course.

These routines have to do with the ways in- dividuals and families attend to self-efficacy, cope with daily stresses, and individuate.

These routines include daily activities, tradi- tional behaviors, and special celebrations that give meaning to daily life, and provide shared enjoyment, pleasure, and happiness for multiple members.

These routines are the various ways mem- bers make decisions related to health care needs; choose when, where, and how to seek supportive health services; and deter- mine ways to respond to medical directives and health information.

These routines pertain to the ways family members act as interactive caregivers across the life course as they socialize children and adolescents about a wide variety of health-related ideals, participate in specific health and illness care needs, and support members’ individual routine patterns.

Source: Denham, S. A. (2003). Family health: A framework for nursing. Philadelphia, PA: F. A. Davis, with permission.

to reach a family’s greatest potential in all aspects of health.

Family Health Promotion Model Most models of health promotion focus on the in- dividual. Adapting Pender’s (1996) health promo- tion model, Loveland-Cherry and Bomar (2004) present a family health promotion model. In this model, the likelihood of a family engaging in

health-promoting behaviors is influenced by the following general, health-related, and behavior- specific factors:

1. General influences ■ Family systems patterns, such as values,

communication, interactions, and power ■ Demographic characteristics, such as

family size, structure, income, and culture ■ Biological characteristics

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2. Health-related influences ■ Family health socialization patterns ■ Family definition of “health” ■ Perceived family health status

3. Behavior-specific influences ■ Perceived barriers to health-promoting

behavior ■ Perceived benefits to health-promoting

behavior ■ Prior related behavior ■ Family norms regarding health-promoting

behavior ■ Intersystem support for behavior ■ Situational influences ■ Internal and environmental family cues

How a family defines family health promotion will influence the likelihood of them planning family unit activities that promote family well- being and cohesion. Family behavioral influences such as perceived barriers or benefits of health- promoting activities of the entire family affect how committed a family will be to continuing or initiating activities that promote health. For ex- ample, to encourage a health-promoting family lifestyle, each family member must value and

believe there is a benefit to eating together, sharing in activities to maintain the home, or balancing family power. Figure 8-1 depicts the Family Health Promotion Model.

Developmental Model of Health and Nursing The Developmental Model of Health and Nurs- ing (DMHN) constructed by Canadian scholar F. Moyra Allen in the mid-1970s and 1980s (Allen & Warner, 2002) has a goal of increasing the capacity of families and individuals in health pro- motion in everyday life situations. The DMHN supports the concept of empowering partnerships, as the model emphasizes health as a process and the capacities all families have, including their po- tential for growth and change (Black & Ford-Gilboe, 2004). In this interaction model, the nurse’s role changes at each phase of the health promotion process, thereby empowering clients toward im- proving their health status. Examples of nursing functions include the following:

■ Focuser, stimulator, and resource producer who involves clients in such tasks as clarify- ing concerns and goals and thinking about their learning style

Family Health Promotion 211

Family system patterns (values, communication

style, interactions, power structure,

cohesion, socialization patterns, interactions with other systems)

Demographic characteristics

(family size, structure, socioeconomic status,

ethnicity, culture, developmental stage)

Biologic characteristics (genetic/familial characteristics)

Family health socialization patterns

Family definition of health

Perceived family health status

General Influences

Health-related Influences

Perceived barriers to health-promoting behavior

Perceived benefits of health-promoting behavior

Prior related behavior

Family norms regarding health-promoting behavior

Intersystem support for behavior

Situational influences on behavior

Behavioral-specific Influences

Health-promoting behaviors

Internal family and

environmental cues

Behavioral Outcomes

FIGURE 8-1 Family Health Promotion Model. (Reproduced from Bomar, P. J. [2004]. Introduction to family health nursing and promoting family health. In P. J. Bomar [Ed.], Promoting health in families: Applying family research and theory to nursing practice [3rd ed., pp. 3–37]. Philadelphia: WB Saunders, by permission.)

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■ Integrator and awareness raiser who assists clients with analyzing the situation, identify- ing additional resources, and seeking poten- tial solutions

■ Role model, instructor, coach, guide, and encourager as clients make decisions on alternatives and try new behaviors

■ Role “reinforcer” and reviewer as clients re- view and evaluate outcomes (Allen & Warner, 2002, p. 122)

Ford-Gilboe (2002) summarizes six studies that tested the propositions of Allen’s DMHN. The studies tested four concepts: health potential, health work, competence in health behavior, and health status. Results indicate significant relationships be- tween health potential and health work. Health work is defined “as a process of active involvement though which families develop or learn ways of cop- ing with health situations and using strengths and resources to achieve goals for individual and family development” (pp. 145–146). Health potential is de- fined as “a reservoir of internal and external capac- ities (i.e., strengths, motivation, resources) that can be drawn on to support health work” (p. 146). In essence, health work reflects what families do in re- sponse to health situations rather than who they are or what they have access to (i.e., aspects of health potential). The level of family health potential, health work, and health competence all were found

to be significant predictors of family functioning. Monteith and Ford-Gilboe (2002) also report that health work predicted 24% of the mother’s health- promoting lifestyle practices. Similarly, moderate correlations also showed health work and the mother’s health-promoting lifestyle practices among 41 adolescent mothers, and the mother’s re- silience and health work explained 30.2% of the mother’s health-promoting lifestyle practices (Black & Ford-Gilboe, 2004).

Model of the Health-Promoting Family The primary concern of Christensen’s (2004) Model of the Health-Promoting Family is the “health practices of the family.” The model ad- dresses how families can play a part in promoting both the health of children and their capacities as health-promoting actors. The model draws on con- temporary social science approaches to health, fam- ily, and children, suggesting a new emphasis on the family’s ecocultural pathway, family practices, and the child as a health-promoting factor.

As shown in Figure 8-2, this model is analyti- cally divided into two parts to distinguish factors external to the family and factors internal to it. The external factors are further divided into societal and community-level factors. The societal factors provide the material base for the family and will, therefore, to a large degree shape the resources

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Societal influences • Socioeconomic position - Income - Education - Resources • Family structure and policy • Ethnicity

Community influences • School • Day care • Peers • Neighborhood • Health services • Consumer society • Media

Genetic background and family health history

Family history of health practices

Family ecocultural pathway • Values • Goals • Needs • Family practices

Family health practices

Child health status

Child as health- promoting actor

FIGURE 8-2 Model of the Health-Promoting Family. (Reproduced from Christensen, P. [2004]. The health- promoting family: A conceptual framework for future research. Social Science & Medicine, 59, 377–387, by permission.)

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available to the family. These include, for example, income and wealth, education and knowledge, fam- ily structure and housing, ethnicity, social net- works, and time. The community level is the configuration of social spheres that contribute to child health. These include the consumer society, local community, schools, health services, mass media, peer groups, and day-care institutions.

The components of the model central to the conception of the family and the processes that may be thought of as going on “inside” it are indicated with a semipermeable boundary—the circle. These are linked to and influenced by the processes and factors “outside” of the family. The internal level has the “family ecocultural pathway” and “family health practices” as the main elements. By interact- ing with each other, these elements lead to collec- tive patterns of health action, practice, and forms of knowledge. An important feature of the model is that it will allow differences between families to be revealed by identifying the conditions for a fam- ily to act in an optimal way for health. It also high- lights the obstacles for families in promoting the health and well-being of children, and the barriers to enabling the child’s development as a health- promoting actor during her growth.

Family health practices fall into the center of the circle (internal factors), and include all those activ- ities of everyday life that shape and influence the health of family members. These consist of the tra- ditional health practices around food and healthy eating, physical activity, alcohol and smoking, and care and connection, as well as other key factors that can be shown to affect young people’s health and well-being.

Although family health promotion has received considerable emphasis in nursing in the past decade, reports on the effectiveness of family-focused health promotion continue to be scanty. Therefore, con- tinued research is required using family health pro- motion models to evaluate the effectiveness of interventions to promote family health.

ECOSYSTEM INFLUENCES: BIOECOLOGICAL SYSTEMS THEORY

The ecological approach, first proposed by Bron- fenbrenner (1977), is useful to understand the multidimensional aspect of family health promo- tion. (See Chapter 3 for a conceptual understanding

and explanation of this model.) Family health promotion is one of the by-products of family interactions with factors and systems outside the home and internal family processes. This ap- proach attends to the interactions among the system levels:

■ Microsystem ■ Mesosystem ■ Exosystem ■ Macrosystem

The microsystem pertains to individual factors, such as biology, personal experience, and general demographics (e.g., age, gender, and education). The mesosystem refers to the interactions be- tween the individuals and their close relationships with partners, peers, and families. The exosystem refers to the community contexts for the family, such as schools, places of work, and neighbor- hoods. Macrosystems are considered the broad cultural attitudes, ideologies, and belief systems that have influence on the family health choices (Lucea, Glass, & Laughon, 2011). This section explores how the ecosystem influences the quality of family life and family health.

Exosystem and Macrosystem Influences on Family Health Both the exosystem and the macrosystem influence family decisions, actions, and interactions that contribute to the health of family members. Some specific external influences include the national economy, family and health policy, societal and cul- tural norms, media, and environmental hazards such as noise, air, soil, crowding, and chemicals. We explore some specific exosystem and macrosystem influences below.

Economic Resources The national economy directly affects the family’s ability to promote health. As a general matter, dur- ing economic downturns, health promotion initia- tives tend to take a back seat to other, more pressing needs. More pointedly, the availability of jobs and, in turn, discretionary funds, directly affects the quality of a family’s lifestyle. Clear disparities exist between health promotion in middle-class families and in low-income families (Edburg, 2013). See Chapter 5 for more on family social policy and health disparities.

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Socioeconomic class is a determinant of health promotion. When a family has economic health, it has the resources needed for family health pro- motion. Adequate family income contributes to emotional well-being and supplies resources for adequate family space, recreation, and leisure. Low-income families, by contrast, are less likely to engage in health-promoting and preventive activities than middle- and upper-class families. The cost of buying recreational and exercise equipment, for example, is often beyond the means of low-income families. The activities of low-income families (and government policy aimed at them) are often directed toward meeting basic needs—providing for food, shelter, and safety, and curing acute illness—rather than pre- venting illness or promoting health. Low-income families often have disproportionately high uti- lization of emergency department (ED) and hos- pital services, and low utilization of preventive visits (Holland et al., 2012).

Governmental Health and Family Policies Health and family policies at all governmental lev- els affect the quality of individual and family health. Many of the objectives in Healthy People 2020 are couched in terms of the individual; many of these objectives, however, can be attained only by providing access to health care and require changing family health lifestyles (Holland et al., 2012; Wang, Orleans, & Gortmaker, 2012). For example, local communities provide water and monitor its quality, maintain sanitation, develop and maintain parks for recreation, and provide health services to low-income and elderly families. Such local services enhance the health of individ- uals and, thus, enhance family health. At the state level, services include assistance with medical care through Medicaid, the maintenance of state recre- ational areas and parks, health promotion and pre- vention programs, and economic assistance for low-income families and children (Anderson, Ward, & Hatton, 2008).

Federal-level policies and fiscal support are needed to improve the quality of family health. Because of the number of different government agencies involved in health care and family issues, a need exists for collaboration among these policy- making bodies. Box 8-1 summarizes the brief his- torical perspectives of family health promotion.

Environment Awareness of the quality of the family living envi- ronment is crucial because the family and its members are exposed to public, occupational, and residential hazards. Environmental health is one of the areas of emphasis of the Healthy People 2020 objectives. Box 8-2 lists the major objectives spe- cific to families. Many environmental hazards are not monitored consistently by families or organi- zations. Therefore, it is imperative to increase the capacity of families to recognize environmental hazards and to teach strategies to prevent, re- move, or cope with environmental hazards such as pollution of air, water, food, and soil from nu- merous chemicals, occupational hazards, and vio- lence (Cowan, 2008). For instance, to prevent exposure to lead and pesticides, families could be taught to wash fruits and vegetables before eating. Workers should be taught to monitor chemicals and infectious materials that might be transmitted to them and their families on work clothing or skin. In addition, paint in older homes and outside play areas should be inspected for lead contami- nation. Families with young children and workers who work around metals and chemicals need to be especially cautious of lead poisoning, and should consult Web sites such as the Centers for Disease Control and Prevention (CDC) for additional information.

Media Another influence on family health is the visual and print media. Media influence on children has steadily increased as new and more sophisti- cated types of media have been developed and made available to the public. Recent evidence raises concerns about the media influence on aggression, sexual behavior, substance use, disor- dered eating, and academic difficulties. Consis- tent evidence has been reported that violent imagery in television, film and video, and com- puter games has substantial short-term effects on arousal, thoughts, and emotions, increasing the likelihood of aggressive or fearful behavior in younger children (Strasburger, Jordan, & Donnerstein, 2010).

Long-term mental health risk for early child- hood violent media exposure was reported by Fitzpatrick, Barnett, and Pagani (2012). They ex- amined whether preschool child exposure to what

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Family Health Promotion 215

BOX 8-1 Historical Perspectives of Family Health Promotion

Although the majority of health care professionals con- tinue to focus their activities on prevention and treatment of illness in individuals and dysfunctional families, key so- cial forces, including the wellness and self-care movement started in 1979, continue to stimulate the nursing profes- sion to focus on health promotion for families. The 1980 White House Conference on Families pointed out the need to improve family functioning and encourage healthy family lifestyles. The conference brought to light the importance of disease prevention and health promo- tion for improving the quality of family life in the United States. Three documents from the U.S. DHHS—Healthy People: The Surgeon General’s Report on Health Promo- tion and Disease Prevention (1979); Promoting Health/ Preventing Disease: Objectives for the Nation (1980); and Healthy People 2000: National Health Promotion and Disease Prevention Objectives (1990)—provided overall goals for the nation regarding health promotion for individuals and families.

Although there were many improvements in the health status of the nation as a whole, Healthy People 2010 (USDHHS, 2000) builds on the lessons learned from the three previous initiatives. The goals for 2010 through 2020 are to eliminate health disparities and to increase the quality and years of life. Major objectives for the millennium include promoting healthy behaviors, promoting healthy and safe communities, improving systems for personal and public health, and preventing and reducing diseases and disorders.

Since the first report by the surgeon general in 1979 and the continued national interest in health promotion in the 1990s, health professionals, family scientists, sociologists, psychologists, religious leaders, and social workers have made considerable strides in understanding and intervening to improve the quality of family health. Another example of this continuing national interest in health promotion is the increasing use of parish nurses, who provide health care and health promotion to individuals and families in faith communities (Solari-Twadell, McDermott, & Matheus, 1999).

parents generally characterize as violent televi- sion programming predicts a range of second- grade mental health outcomes, and reported that child exposure to televised violence was associ- ated with teacher-reported antisocial symptoms,

BOX 8-2 Healthy People 2020 Environmental Objectives Specific to Families

Objective Short Title WATER QUALITY

EH-4: Increase access to safe drinking water EH-5: Reduce waterborne disease outbreaks EH-6: Increase water conservation EH-7: Reduce surface water health risks

TOXICS AND WASTE

EH-8: Reduce blood lead levels in children EH-9: Reduce risks posed by hazardous sites EH-10: Reduce pesticide exposures EH-11: Reduce toxic pollutants in the environment

HEALTHY HOMES AND HEALTHY COMMUNITIES

EH-13: Reduce indoor allergens EH-14/15: Increase homes tested for radon

EH-16: Implement school policies to protect against environmental hazards

EH-17/18: Increase lead-based paint testing EH-19: Reduce the number of occupied substandard

housing

OTHER ENVIRONMENTAL OBJECTIVES SPECIFIC TO CHILDREN

24-2a: Reduce asthma-related hospitalizations of children younger than 5

TU-11: Reduce the proportion of nonsmokers exposed to secondhand smoke

TU-14: Increase the proportion of smoke-free homes

Source: U.S. Department of Health and Human Services. (2012). Healthy People 2020. Washington, DC. Retrieved from http://healthypeople.gov/2020/topicsobjectives2020/objectiveslist.aspx?topicId=12

emotional distress, inattention, and lower global academic achievement in second grade. Violent viewing also was associated with less child- reported academic self-concept and intrinsic mo- tivation in second grade (Fitzpatrick et al., 2012).

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Many advertisements advocate drinking alcohol, using tobacco products, and consuming foods that are high in sugar, salt, and fat. Increasingly, to- bacco, alcohol, and illicit drugs have been glamor- ized in the media. Tobacco manufacturers spend $6 billion per year and alcohol manufacturers $2 billion per year in advertising that appeals to children (“Influence on Children Media,” 2008). Movies and television programs often show the lead character or likeable characters using and enjoying tobacco and alcohol products.

At the same time, the readily available and rap- idly increasing media outlets put more emphasis on health in a positive way (Lee, 2008). Relatively recent tobacco advertising regulations, for instance, take a small step in the right direction toward pro- moting healthier families. The regulations prohibit tobacco advertisements near schools, on T-shirts, and in magazines for teens. Many states require that cigarettes not be in the reach of minors in retail stores (CDC, 2012). In fact, one of the Healthy People 2020 objectives is to reduce the pro- portion of adolescents and young adults in grades 6 through 12 who are exposed to tobacco advertis- ing and promotion (U.S. Department of Health and Human Services [USDHHS], 2012).

The American Academy of Pediatrics (AAP) (2010) has offered comprehensive recommenda- tions to address the issue of media influence on children. Included in these recommendations are suggestions for parents, practitioners, schools, entertainment industry, advertising industry, re- searchers, and government to protect children and adolescents from harmful media effects and to max- imize the powerfully prosocial aspects of modern media. In addition, the AAP urges media producers to be more responsible in their portrayal of vio- lence. It advocates for more useful and effective media ratings. Specifically, it recommends proac- tive parental involvement in children’s media ex- periences. By monitoring what children hear and see, discussing issues that emerge, and sharing media time with their children, parents can mod- erate the negative influences and increase the pos- itive effects of media in the lives of their children (AAP, 2010).

Science and Technology Advances in science and technology have increased the life span of Americans, decreased the length of hospital stays, and contributed to our understanding

of how to prevent, reduce, and treat disease. The development of more effective medications and ad- vanced medical equipment technology has greatly increased the feasibility of home health care for chronically ill family members of all ages. Families are often the caregivers for ill members, and they provide the majority of care to older adults. Many valuable sources of information on health promo- tion for families and individuals are now available. The Internet and the use of the worldwide Web is one forum that has come of age in the areas of family life education and nutrition education (Silk et al., 2008; Välimäki, Nenonen, Koivunen, & Suhonen, 2007).

Other technological advances are changing how we provide health care. The use of remote patient monitoring, often referred to as telehealth, has been widely adopted by health care providers, particu- larly home care agencies (Suter, Suter, & Johnston, 2011). Most agencies have invested in telehealth to facilitate the early identification of disease exacer- bation, particularly for patients with chronic diseases such as heart failure and diabetes. For ex- ample, telehealth permits families to transmit heart rates via telemedicine to health care providers and for specialists to consult with family physicians, making it easier for individuals to access health care and for practitioners to provide it (Gregoski et al., 2012). Suter et al. (2011) proposed that the use of telehealth by home care agencies and other health care providers be expanded to empower patients and promote disease self-management with result- ant improved health care outcomes. Telehealth has the potential to improve health care access, quality, and efficiency.

Microsystem and Mesosystem Influences on Family Health Internal ecosystem influences on family health in- clude family type and developmental stage, family lifestyle patterns, family processes, personalities of family members, power structure, family role models, coping strategies and processes, resilience, and culture. All of these factors are interrelated. For example, a family’s lifestyle cycle stage influ- ences a family’s structural pattern, and family struc- tures affect the family interaction process and relationships (McGoldrick et al., 2011). Therefore, nurses working with families in the area of health promotion must be sensitive to these various

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factors to recommend successful family health promotion interventions.

Family Structure Families in this millennium are quite different struc- turally from the families of the 1970s. Family struc- tures are more diverse; there are more dual-career/ dual-earner families, blended families, same-sex couples, and single-parent families (Kaakinen & Birenbaum, 2012). Recently, increasing numbers of grandparents raising grandchildren have been re- ported (Leder, Grinstead, & Torres, 2007). Families in both the middle and lower classes are in such economic strain that they both struggle with health promotion. The number of vulnerable families has also increased, including low-income traditional families, low-income migrant families, homeless families, and low-income older adults. Included in the vulnerable population are low-income, single- parent families and single-parent teen families. Vulnerable families are coping with a pileup of stres- sors and may be unable to focus on activities to enhance health (Walsh, 2011a). As stated earlier, low-income families may focus less on health pro- motion and more on basic needs of obtaining shelter, adequate food, and health care.

Health promotion for these different families presents various challenges. For example, a sin- gle, working parent may lack parent-child time, experience role stress, and have poor lifestyle patterns and poor life satisfaction (Walsh, 2011a). Data from the 2002, 2006, and 2010 Scottish Health Behavior in School-aged Children (HBSC) surveys indicate that in single-mother homes, having a working mother was also positively associated with irregular breakfast consumption (Levin, Kirby, & Currie, 2012). Similarly, the findings of the Canadian Community Health Survey indicated that there is an association be- tween household structure and smoking among adolescents in Canada. The odds of youth smok- ing in the single-parent household was 1.78 times greater than the odds of youth smoking in two- parent households (Razaz-Rahmati, Nourian, & Okoli, 2011). Family structure is associated with a range of adolescent risk behaviors, includ- ing smoking, drinking, cannabis use, having sex, and fighting (Levin et al., 2012). Those ado- lescents living in a family with both parents pres- ent fared better than those who lived with single parents.

Family Processes Family processes are continual actions, or a series of changes, that take place in the family experience. Essential processes of a healthy family include functional communication and family interaction (Smith et al., 2009). Through both verbal and non- verbal communication, parents teach behavior, share feelings and values, and make decisions about family health practices. It is through communica- tion that families adapt to transitions and develop cohesiveness (Smith et al., 2009). Positive, reinforc- ing interaction between family members leads to a healthier family lifestyle. For example, when family members encourage, express affection, and show appreciation to each other, the family tends to be more functional (healthier).

Family Culture Cultures define and value health, health promo- tion, and disease prevention differently (Meyer, Toborg, Denham, & Mande, 2008; Spector, 2013). One of the most evident features of families today is the growing cultural diversity (Walsh, 2011b). A mounting trend is toward a global society with ever-increasing diversity among the populations; therefore, an expanded worldview is necessary for health care students and providers (Purnell, 2013). Clients may not understand or respond to a family nurse’s suggestions for health promotion because the suggestions conflict with their own health be- liefs and values. Hence, it is crucial to assess and understand the family culture and health beliefs before suggesting changes in health behavior (Spector, 2013). An important component of family assessment is the consideration of cultural health practices. These practices influence all aspects of the nursing process, and understanding them helps the nurse evaluate client behavior and plan more effective interventions that are consistent with client health beliefs.

Keep in mind with regard to family culture that cultural tension or an acculturation gap may emerge between immigrant children and their parents relative to beliefs about healthful behavior (Birman & Poff, 2011). Children become in- volved in the new culture relatively quickly, par- ticularly if they attend school, but their parents may never acquire sufficient comfort with the new language and culture to become socially integrated into their new country. In addition, immigrant children may have few opportunities

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to participate in and learn about their heritage culture (Birman & Poff, 2011). Therefore, nurses need to be aware that parents and children may misunderstand one another because of cultural differences in expectations for parent and child behaviors and family relationships. In addition, immigrant parents may have strict and control- ling parenting styles in their heritage culture that are considered warm and attentive to the child, but that in the host culture are considered authoritarian (Farver, Xu, Bhadha, Narang, & Lieber, 2007). At the same time, children may embrace the opportu- nity to engage in unsupervised activities and behav- iors that may be normative in the host society (such as sexual activity, drinking alcohol, eating fast foods, or recreational drug use) but unacceptable in their heritage culture and to their parents (Birman & Poff, 2011). The children taking on un- healthful behaviors of the new culture interferes with the health promotion function of the parents, so there is a tension between society and the family socialization function.

Family Lifestyle Patterns Lifestyle patterns affect family health. In North America, hundreds of thousands of unnecessary deaths occur each year that can be directly attrib- uted to unhealthy lifestyles. These deaths can be traced back to heart disease, hypertension, cancer, cirrhosis of the liver, diabetes, suicide, mental health, and homicide. For example, parental smoking is associated with a significantly higher risk of their adolescent children smoking (Gillman et al., 2009).

Likewise, positive lifestyle patterns affect fam- ilies in positive ways. For instance, when family members engage often in leisure activities, recre- ation, and exercise, they are able to cope with day- to-day problems better (Smith et al., 2009). Time together promotes family closeness. Healthy lifestyle practices such as good eating habits, good sleep patterns, proper hygiene, and positive approaches to stress management are passed from one generation to another (McGoldrick et al., 2008). In addition, when one family member ini- tiates a health behavior change, other family members often make a change too. For example, when an individual family member changes eating patterns, perhaps by going on a diet, other family members often change their eating patterns as well.

Family Nutrition Family nutrition is a crucial aspect of 21st century family health promotion and health protection. A major issue today for American families is the tendency toward overweight and lack of exercise among family members of all ages. Major factors that influence nutritional health are societal trends (technology, media, fast food, status), the family system (rituals, mealtime, environment, culture, values, communication, finances, marital status), and individual characteristics (self-concept, age, ac- tivity levels) (Epstein, Roemmich, &, Robinson, 2008; Levin et al., 2012; Musick & Meier, 2012; Smith et al., 2008; Spector, 2013).

“Overnutrition” in American families is often the issue rather than malnutrition (Levin et al., 2012). A result of societal and family changes is that obesity in children and adolescents is a key 21st-century issue (USDHHS, 2011). Effective parenting, health teaching about nutrition, physi- cal activity, and consideration of the family context are reported to be essential to reducing childhood obesity (Kitzmann, 2008). For example, lowering TV-viewing time by 1 hour per day could reduce approximately 100 kcal/day through reducing eat- ing while watching, exposure to food and beverage advertising, and sedentary behavior. Increasing physical activity and reducing sedentary behaviors are clearly important strategies to restore youth energy balance (Epstein et al., 2008; Sonneville & Gortmaker, 2008).

The nurses’ role in family nutrition is to assess the quality of nutrition for individuals and the fam- ily system, provide anticipatory guidance, teach about nutrition, and support changes in the indi- vidual and family nutritional lifestyle. For example, one of the primary issues for people is large portion size. To promote weight loss and control, the fam- ily cook and members could be taught the appro- priate portion size according to age and nutritional guidelines. The nurse can become familiar with the most current guidelines in the Dietary Guidelines for Americans 2010 published by the USDHHS (2011).

Religion and Spirituality Religion and spirituality are factors that influence the quality of family life. Many fundamental family beliefs are founded in religion and spirituality. Spirituality and religious beliefs appear to serve as powerful protectors embraced by resilient families (Black & Lobo, 2008).

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Although often used interchangeably, the terms religion and spirituality are different (Koenig, 2012). Religion tends to relate to the expression of beliefs and includes a relationship with God or some super- natural power. Spirituality provides transcendence, meaning, and compassion for others. Pivotal life events such as births, marriage, life-threatening ill- ness, tragedy, and death are situations that may spark a family’s interest in spirituality (Burkhart, 2011).

Religion aids in family coping responses and is reported to provide support for selected caregivers (Burkhart, 2011). Membership in a church is often an avenue to gain supportive networks for family members (Carson & Koenig, 2011; Koenig, 2012; Walsh, 2011a). The social support of religion and the clergy can be particularly helpful during family transitions. Many faith communities sponsor sup- port groups that are a valuable resource for single parents, stepfamilies, single adults, the bereaved, widows and widowers, the unemployed, and par- ents of young children.

Spirituality may or may not be religion based, but whatever the spiritual orientation, families as- sociated with a shared internal value system that provides meaning tend to feel a connection with the family, community, and universe (Walsh, 2011a). Family spirituality provides the basis for harmony, communication, and wholeness among family members (Black & Lobo, 2008). A shared belief system of hope and triumph enables families to make sense of crisis or change. When con- fronted with problems, many families foster an op- timistic attitude with spirituality, seeking purpose in faith. Spirituality has also been found to be an essential factor of resilience, as it provides families with the ability to unite, understand, and overcome stressful situations (Black & Lobo, 2008). Religios- ity is reported to have a strong positive relationship to parent-adolescent attachment, family function- ing, and adolescent psychological adjustment in the United States and Ireland (Goeke-Morey et al., 2013; Kim-Spoon, Longo, & McCullough, 2012).

The positive effect of spirituality is pervasive in health care for the lives of many families; there- fore, a need exists to integrate spiritual assessment and interventions in total family care (Black & Lobo, 2008). Four nursing diagnoses related to family spiritual health are (1) spiritual distress, (2) readiness for enhanced spiritual well-being, (3) risk for spiritual distress, and (4) impaired religiosity, both risk for and actual (NANDA

International, 2012). Spiritual distress is a disrup- tion in the harmony of life and pervades the entire person’s or family’s universe. To provide holistic care, nurses should assess a family’s spiritual health in a nonjudgmental manner by supporting the family’s spiritual beliefs, assisting families to meet their spiritual needs, providing spiritual resources for family transitions and lifestyle changes, and assisting families to find meaning in their circum- stances (Carson & Koenig, 2011). Last, to foster a family’s spiritual well-being, the nurse should listen, be encouraging and empathetic, show vulnerability, and demonstrate commitment.

FAMILY NURSING INTERVENTIONS FOR FAMILY HEALTH PROMOTION

Family health promotion has been defined as the process by which families work to improve or main- tain the physical, social, emotional, and spiritual well-being of the family unit and its members (Loveland-Cherry, 2011). Family nurses have a cru- cial role in facilitating health promotion and well- ness within the family context across the life span. Enhancing the well-being of the family unit is es- sential during periods of wellness, as well as during illness, recovery, and stress. A primary goal of nurs- ing care for families is empowering family members to work together to attain and maintain family health; therefore, family health promotion should focus on strengths, competencies, and resources (Gottlieb, 2013; Wright & Leahey, 2013). Family nursing that focuses on health promotion should be logical, systematic, and include the client(s). The outcomes of health promotion of the family include family unity, flexibility, communication, and quality of care (Loveland-Cherry, 2011).

A myriad of strategies and interventions facilitate family health promotion, such as empowerment, promotion of family integrity, maintenance of fam- ily process, exercise promotion, environmental management, mutual goal setting, parent education, offering information, drawing forth family support, and anticipatory guidance (Loveland-Cherry, 2011; Wright & Leahey, 2013). The interventions have focused on building resources in families and pro- moting changes in families. A number of the inter- ventions center on fostering the development of parents’ self-efficacy in effective parenting and accessing resources to meet family health needs

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(Loveland-Cherry, 2011). The following strategies will be discussed for promoting family health: fam- ily self-care contract, family empowerment and family strengths-based nursing care, anticipatory guidance and offering information, use of rituals/ routines and family time, and family meal and healthy eating.

Family Self-Care Contract: Involvement of All Family Members The family and nurse must collaborate and set mu- tual goals by establishing a nursing contract. The nursing contract is a working agreement that is continuously renegotiable and may or may not be written depending on the situation (Anderson et al., 2008). The premise of contracting is that it is under the family’s control, it increases the family’s ability to make healthy choices, and this process facilitates family empowerment by collaborating with a health professional (Anderson et al., 2008).

Once the nurse and family have identified family strengths and areas for growth and change, the

family should prioritize its goals. The commitment of all family members directed toward achieving a goal is crucial to the family’s success. Nurses can assist a family to develop a self-care contract to improve health behaviors, independently or with a nurse. Table 8-4 provides components and sam- ple items of a family self-care contract. The con- tracts are more effective when the components are negotiated and signed by all family members (Kim-Godwin & Bomar, 2010).

Family provides resources for health behaviors and health care. These resources include monetary support, information, emotional support, skills to navigate systems, and direction on desirable or healthy behaviors (Loveland-Cherry, 2011). Families are responsible for the health care of their members. These responsibilities include required immuniza- tions and health checks; providing adequate shelter, clothing, and food; and seeking health care when warranted (Loveland-Cherry, 2011). Socialization of family members is another major function in families and is accomplished in a variety of ways. Parents are important role models for children.

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Table 8-4 Components of a Family Self-Care Contract

Component of the Contracting Process (Mutually Agreed on By Family Members and Health Professional or By Family Alone) Example of Item in a Family Contract

Family assessment of wellness and identification of area for improvement

Set the goal, environmental planning, and reinforcement

Develop a plan

Assign responsibilities

Determination of time frame

Evaluate the outcomes

Modify, renegotiate, or terminate

Our family feels a sense of always being hurried with no time to relax, and we are irritable with each other.

We want to have more relaxing time together as a family and to enjoy our time together.

Have a family meeting to evaluate barriers and create a plan. The outcome might be to reduce sports activities for children. Specify a family fun night/afternoon.

Plan an evening game night with no television or phone calls allowed.

All members agree on the game or recreation activity. No one else but the family should participate. Evaluate the budget for games. The family nurse will assist the family to create the plan. Family members will agree to take part in the family fun time.

We plan to do this for 2 months, one night a week on Sunday evening from 4:00 p.m. to 7:00 p.m.

After each week, we will spend 5 minutes talking about what was good and what could be improved. How are we relating to each other the remainder of the week?

We will evaluate the family fun time after 2 months and mutually agree on changes.

Source: Kim-Godwin, Y. S., & Bomar, P. (2010). Family health promotion. In J. R. Kaakinen, V. Gedaly-Duff, D. P. Coehlo, & S. M. H. Hanson (Eds.), Family health care nursing (4th ed.). Philadelphia, PA: F. A. Davis, with permission.

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Family members provide both negative and positive role models. For example, smoking, use of drugs and alcohol, poor nutrition, and inactivity are often intergenerational patterns. Stress man- agement, exercise, and communication are also learned from parents, siblings, and extended family members such as grandparents (McGoldrick et al., 2008). One interesting finding of note to nurses is that fathers’ involvement is especially important for vulnerable families. Marsiglio (2009) reported that fathers’ lack of exercise, poor eating, excessive drinking, and smoking predicts the same behaviors among adolescents. Shapiro, Krysik, and Pennar (2011) analyzed mother-reported data in families eligible for the Healthy Families Arizona preven- tion program (N = 197) and found that families with greater father involvement had better prena- tal care, higher incomes, less maternal involvement in Child Protective Services, less physical domestic violence, and greater maternal mental health reflected through less loneliness. Therefore, nurses need to make an effort to include fathers when developing plans for family health promo- tion and to assist fathers to develop positive role models for their children. By teaching healthy lifestyle in the community, faith-based centers, homes, and the workplace, nurses promote positive role modeling.

Family Empowerment and Family Strengths-Based Nursing Care A primary goal of nursing care for families is em- powering family members to work together to at- tain and maintain family health; therefore, family health promotion should focus on strengths, com- petencies, and resources (Gottlieb, 2013; Wright & Leahey, 2013). The nurse collaborates with the family and provides information, encouragement, and strategies to help the family make lifestyle changes. This process is termed empowerment. The underlying assumption of empowerment is one of partnership between the professional and the client as opposed to one in which the professional is dom- inant. Families are assumed to be either competent or capable of becoming competent (Anderson et al., 2008).

The primary emphasis in family empowerment is involvement of the family in goal setting, plan- ning, and acting, not on having the nurse do this for the family. A key role of family nurses in family

health promotion is to empower family members to value their “oneness,” to appreciate family to- getherness, and to plan activities to foster their unity (Gottlieb, 2013).

One way of empowering a family is the use of commendation because it enables families to view the family problems differently and move toward solutions that are more effective. Wright and Leahey (2013) recommend that nurses rou- tinely commend family and individual strengths, competencies, and resources observed during the family interview. According to Wright and Leahey (2013), commendations to families regarding their strengths are “powerful, effective and enduring therapeutic interventions” (p. 150). While this in- tervention is important for all families, it is espe- cially important for vulnerable families. Often, a family has unique strengths that are temporarily overshadowed by the health needs, so these strengths lie outside of the family’s awareness (Walsh, 2011a). By commending a family’s competence and strengths, and offering it a new opinion of itself, a context for change is created that allows families to discover their own solutions to problems (Gottlieb, 2013; Wright & Leahey, 2013).

The strengths-based approach has been used in health promotion, to enhance wellness and well-being. Working with strengths enables a person to get the most out of living in order to cope, recover, heal, and discover a new purpose and meaning in living. Strengths-based nursing care does not ignore or negate problems; neither does it turn a blind eye to weaknesses or deficits. Instead, it uses strengths to balance or overcome them (Gottlieb, 2013, p. 24). Working with the person’s and family’s strengths allows patients to maximize and support their responses in order to deal with everyday events and difficult life challenges (including illness, injury, disability, and trauma) and to meet their goals (Gottlieb, 2013). Strengths can be biological, intrapersonal and interpersonal, and social. Biological strengths are related to the biochemical, genetic, hormonal, and physical qualities within each individual or family. Intrapersonal and interpersonal strengths reside in the person and define one’s personhood and are considered a part of a person’s or a fam- ily’s inner resources. Social strengths, commonly known as resources or assets, reside in the person’s environment and are available to individuals or the family (Gottlieb, 2013).

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Anticipatory Guidance and Offering Information During their life course, families inevitably experi- ence crises and either normative or nonnormative stress. The family’s resilience, unity, and resources influence how they cope with crisis and stress. The goal of the family nurse is to facilitate family adap- tation by empowering the family to promote re- silience, reduce the pileup of stressors, make use of resources, and negotiate necessary changes to en- hance the family’s ability to rebound from stressful events or crises. The nurse can teach families to an- ticipate life changes, make the necessary adjust- ments in family routines, evaluate roles and relationships, and cognitively reframe events.

Nurses should offer information based on family abilities and should encourage family members to seek resources independently (Wright & Leahey, 2013). Families usually desire information about developmental issues and health promotion. For example, helping parents to understand and help their children is an important intervention for fam- ilies (Wright & Leahey, 2013). Nurses can teach families about physiological, emotional, and cog- nitive characteristics, as well as identify develop- mental tasks or goals of children and adolescents that can be affected or altered during times of illness (Wright & Leahey, 2013, p. 152).

Nurses working with well families can teach family awareness, encourage family enrichment, and provide information on community agencies and Web sites that are resources for strengthening and enriching families. The family could be en- couraged to agree on a goal to attend or find out more about resources or programs. By offering op- portunities for family members to express feelings about family experiences, the nurse enables the family to draw forth its own strengths and re- sources to support one another (Wright & Leahey, 2013). Drawing forth family support is especially important in primary health care settings (Wright & Leahey, 2013).

Use of Rituals/Routines and Family Time Denham (2011) emphasizes the use of family rituals and routines for health promotion. The findings of previous research have indicated that predictable routines and meaningful rituals are related to

healthier outcomes and that establishing routines is vital to managing demands in households with many extended family members (Hall, 2007).

Family nurses know that routines are observable and repeated behavior patterns that have great con- sistency and regularity. Family routines are collec- tive events that occur on a daily, weekly, or annual basis. They typically include a set time and place, assignment of roles, and an element of planning ahead. Nurses can work with families to establish or help them maintain daily routines that are cre- ated around mealtimes, taking medications, and sleep (Fiese & Everhart, 2011). Families are able to plan ahead and provide a sense of stability to daily routines, yielding lower levels of stress and better family life. Family routines can be disrupted for ex- pected developmental transitions (such as having a new baby in the house or moving to a new geo- graphical location) and unexpected family situa- tions (such as a diagnosis of a chronic health condition or strained economic resources). There- fore, family nurses can help prospective parents dis- cuss family routines so they can be established when the new family member arrives. The key preservative function of routines appears to be not only maintaining a sense of order in daily life, but also staying connected as a group (Fiese & Everhart, 2011). Routines provide family members the opportunity to communicate about events im- portant to them. For example, at family holiday gatherings, memories about past gatherings are shared, communicating a shared heritage and sense of belonging to a larger group. Over time, these communication patterns expressed during family gatherings come to cement relationships shown to be associated with healthy family functioning (Fiese & Everhart, 2011).

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Family ritual is a repetitive pattern of prescribed formal behavior pertaining to some specific event, occasion, or situation, which tends to be repeated over and over again (Imber-Black, 2011). Family rituals often surround secular (such as birthday) and ceremonial occasions linked to religion (such as baby baptism), faith or some form of canonical principles that distinguish ordinary from extraor- dinary and celebrate value ideals (Denham, 2011). Rituals are best introduced when there is an exces- sive level of confusion, as they provide clarity in a family system (Imber-Black, 2011).

Family routines/rituals may be perceived as being a fairly reliable index of family collaboration, accommodation, and synergy (Denham, 2011). To use rituals and routines as therapeutic interven- tions, nurses must identify ways to use intentional- ity to assist family members as they create, amend, and adjust routines so that they are relevant to fam- ilies’ unique health and illness needs. Nurses need to be educated to observe or consider the impact of family rituals and routines on management of chronic illness. For example, diabetes is a disease greatly influenced by adherence to a prescribed medical regimen that usually includes a dietary plan, exercise, compliance in medicine usage, blood glucose monitoring, physician visits, and other care modalities. When adherence to a medical regimen is a concern, family members must identify the crit- ical care aspects, key member duties for essential activities, and necessary actions to be included in family routines (Denham, 2011).

Family Meal and Healthy Eating Factors in the family environment that promote healthful eating include the healthfulness of foods available in the home and consumed at meals, the frequency of family meals, and parental modeling of and support for children’s healthful eating (Fruh et al., 2012; Haerens et al., 2008; Hammons & Fiese, 2011). Employed mothers are noted to pur- chase prepared foods more frequently, including fast food and carry-out meals, consume more food away from home, and commonly report missing out on family meals (Devine et al., 2009).

Bauer, Hearst, Escoto, Berge, and Neumark- Sztainer (2012) analyzed the data from Project F-EAT, a population-based study of a sociodemo- graphically diverse sample of 3,709 parents of adolescents living in a metropolitan area in the

Midwestern United States. They reported that full-time employed mothers reported fewer family meals, less frequent encouragement of their ado- lescents’ healthful eating, lower fruit and vegetable intake, and less time spent on food preparation when compared to part-time and not employed mothers. Full-time employed fathers reported significantly fewer hours of food preparation. In addition, higher work-life stress between both par- ents was associated with less healthful family food environment characteristics, including less fre- quent family meals and more frequent sugar- sweetened beverage and fast food consumption by parents.

Research on family mealtime reveals that fre- quency of family meals is a protective factor that may curtail high-risk behaviors among youth (Fruh et al., 2012). For example, frequency of eating a family meal was associated with a reduced likeli- hood of all risk behaviors (e.g., smoking, drinking, cannabis use, bullying) among girls and all but fighting and having sex among boys (Levin et al., 2012). Fruh et al. (2012) listed the following out- comes from families eating together:

■ Teenagers who eat meals with their families frequently are less likely to be depressed or use drugs than those who do not eat with their families as often. They are also less likely to be violent, to have sex, and to expe- rience emotional stress. Adolescents who eat meals with their families are likely to be more highly motivated in school and have better peer relationships.

■ Regular shared mealtimes can increase children’s sense of belonging and stability, and the entire family’s feeling of group con- nection. Many adolescents in a large national study reported that they want to be with their parents for most evening meals.

■ Teenagers who share meals with their fami- lies on a regular basis tend to eat healthier foods than those who do not. They consume fewer high-fat, high-sugar prepared and packaged foods, and more fruits and vegeta- bles and other foods high in important nutrients and fiber.

In addition, family mealtimes facilitate improving family communication, fostering family tradition, and teaching life skills to children. Encouraging shared meals when possible is a way nurses can

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enhance family bonding as this gives families an opportunity to be together and communicate with each other.

FAMILY CASE STUDIES

The following family case studies are used in the next sections of the chapter to demonstrate how different theoretical approaches can be used for as- sessing and intervening in the family for health promotion.

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additional space for the new baby. Although the house is spacious, it is old and needs some renovation.

This is the first marriage for Eleanor and second mar- riage for James (James divorced 5 years ago). Eleanor stated that the family has been successfully going through the remarriage cycle, and Hanna and Eleanor have a pretty good relationship. Hanna is usually withdrawn after visiting her biological mother (summer and winter school vaca- tions, and several holidays—generally five times a year), who is also remarried and gave Hanna a new stepbrother (age 2) from her current marriage. Hanna is attending an after-school program at the same school where Eleanor works and returns home with Eleanor. On the way home, Eleanor picks up Dustin from the day care, which he at- tends from 7:30 a.m. to 4:30 p.m. during the weekdays. Hanna attends a piano lesson on Tuesdays and ballet class on Thursdays.

Because of the family’s busy schedule, they often eat at fast-food restaurants during the evenings (at least twice a week), and meals at home are usually rushed and often eaten in front of the television. Although the family tries to eat meals together, it cannot do so because James’s job re- quires frequent traveling, so the family often ends up eat- ing meals without James.

When James is at home, he does outdoor chores, whereas Eleanor usually does indoor chores. The children usually watch television and play video games when the couple is working at home. The couple tries to do family activities each Sunday, and all family members attend a local Presbyterian church. But James is generally not home one Sunday each month because of the travel require- ments for his job. With the exception of family vacations, holidays, and Sundays, the Budds rarely spend time to- gether enjoying each other’s company.

James and Eleanor seldom agree on parenting prac- tices; whereas Eleanor is firm and detailed, James is laid- back. James has some guilty feelings toward Hanna, thus making him very lenient toward her. Hanna usually goes to her dad to escape her regular duties and whenever Eleanor asks her to complete assigned tasks. James usually accepts Hanna’s request because of his guilty feelings, and this makes Eleanor uncomfortable and frustrated.

Eleanor was seen by a nurse in the OB/GYN clinic for her regular prenatal checkups. She is going through a normal pregnancy, but she recently has experienced seri- ous fatigue. Her additional concern is that she has a diffi- cult time putting Dustin to bed each night. Dustin used to go to bed easily when they lived in the apartment, where he shared a room with Hanna. After moving to the new house 3 months ago, where he has his own room,

Family Case Study: Budd Family Setting: Prenatal clinic (regular prenatal checkup).

Family Nursing Goals: Work with the family members to assist them in successful family transition and balance.

Family Members: • James: father; 32 years old; full-time but temporarily

employed without benefits, expects to be promoted to a permanent position soon with benefits (married Eleanor 3 years ago).

• Eleanor: mother; 33 years old; full-time employed, a school teacher at an elementary school with benefits, considering being a “stay-at-home” mother after giving birth (6 months pregnant); first marriage, married James after giving birth to Dustin.

• Hanna: oldest child; 8 years old; daughter (from James’s first marriage), third grade, usually a good student.

• Dustin: son; 3.5 years old; all-day preschool (private day-care facility), developmentally on target.

• The couple is expecting a baby girl in 3 months.

Family Story: James (32 years old) and Eleanor (33 years old) have one daughter, Hanna (8 years old), and one son, Dustin (3.5 years old). James is a full-time worker in a sales business (see the Budd family genogram in Figure 8-3). Currently, he is a full-time employee but under tempo- rary status; he is expected to have a permanent position soon (date is not sure) that provides benefits and covers health insurance. Eleanor has a full-time position as an elementary-school teacher. She wants to be a stay-at- home mother but is afraid of losing health insurance and family income if she quits now, so she wants to wait until James gets a permanent full-time position with benefits.

The couple married 3 years ago; they recently moved from an apartment to a house because the family needs

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Family Health Promotion 225

he has not been the same. Eleanor notices that he is more energetic at night and wants to stay with her before going to bed. In addition, Dustin has started visiting the parents at night and staying with them during the night, when he should be sleeping in his own bed. He has recently complained about his tummy being upset, and Eleanor is not sure whether he is sick or is just faking to get attention. Dustin is excited to have a baby sister, but he also shows some jealousy. For example, Dustin acted like an infant baby when his parents decorated the baby’s room and bed with pink colors.

Although James helps Hanna at night, putting Dustin to bed is Eleanor’s job, and she is overwhelmed with his behavior. Eleanor says that James is a good husband, but she feels that he considers parenting to be a mother’s role, which sometimes leaves her feeling overwhelmed and angry. Eleanor perceives that all family members are healthy and states that they are just a busy family. Her additional concern is the family finances after she quits her job. The nurse sees only Eleanor during this time, and requests that James and the children come for the next visit. (See the Budd family ecomap in Figure 8-4.)

Assessment: As explained in Chapter 3, models that nurses use to assess family health differ. The following illustrates how

different assessments and options for interventions vary based on the theoretical perspectives of the family.

Family Systems Theory: The focus of the nurse’s practice from this perspective is family as client; therefore, assessments of family members are focused on the family as a whole. In the case study, all members of the Budd family are affected when the mother gives birth. Eleanor currently feels that her husband consid- ers parenting as a mother’s role. If James continues to be passive in his parenting role, it would cause a difficult fam- ily transition when the baby is born. In addition, the arrival of the new baby could make going to bed even more diffi- cult for Dustin at night, if not resolved.

Developmental and Family Life Cycle Theory: The family is a blended family and is in the stage of the “families with young children” (infancy to school age) because their oldest daughter, Hanna, is an elementary- school child. The family is experiencing an additional normative developmental stressor of adding a new family member. The tasks required for this family include adjusting to the addition of a new family member, defining and sharing childrearing, financial and household tasks, and realigning relationships with extended family, parents, and grandparents. In addition, although Dustin is

Eleanor 33 yr

60

38 30 28 24

Baby girl 6 mo

65 61

M 3 yrD 5 yr

2 yr

James 32 yr

Hannah 8 yr

Dustin 31/2 yr

FIGURE 8-3 Budd family genogram.

(continued)

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226 Families Across the Health Continuum

developmentally on target, the family is experiencing a challenge to make Dustin go to bed each night, and may face a challenge with potential sibling rivalry.

Bioecological Theory: In the bioecological model, nurses need to assess the mi- crosystem (i.e., family composition and home environ- ment), mesosystem (i.e., external environment), exosystem (i.e., job and income), and macrosystem (i.e., community). The Budd family consists of two parents, two children, and a baby on the way. The couple has a white European her- itage. The family lives in an old one-story house with four bedrooms in an older suburban section of town. During fur- ther interviews, the nurse found that the Budds’ house was built before 1950 and is still under renovation.

The extended family (grandparents and siblings of Eleanor’s side) live nearby, and Eleanor has a close

relationship with them. The extended family gets together for most holidays; James and Hanna seem to have a tenu- ous relationship with Eleanor’s family. The town is largely composed of white ethnicity with 30% African American. None of the parents or siblings of James lives nearby. James’s dad passed away 10 years ago in a car accident; his mother remarried 7 years ago and lives 500 miles away. The Budds and James’s mother usually meet once a year and talk once or twice a month via telephone. James has an older sister who lives out of the country because of her husband’s military service.

Family Assessment and Intervention Model: Using the Family Systems Stressor-Strength Inventory (FS3I) of the Family Assessment and Intervention Model, the major family stressors include (1) Dustin’s bedtime problem, (2) Eleanor’s upcoming birth, (3) insufficient couple time

PTA school

Day-care center

School

Sports

Extended family

Work

Friends Extended

family

Primary health care

Work

Eleanor

Hannah

James

Dustin

Church

Girl Scouts

Strong relationship

Weak relationship

Tense relationship

Direction of energy flow

FIGURE 8-4 Budd family ecomap.

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Family Health Promotion 227

and family playtime, (4) insufficient “me time” (specifically Eleanor), (5) inadequate time with the children and watch- ing television too much (children), (6) overscheduled family calendar, and (7) parenting conflict and lack of shared responsibility. Some job stress exists because James is still in a temporary position and his work requires traveling.

Family strengths include (1) shared religious core, (2) family values and encouragement of individual values, (3) affirma- tion and support of one another, (4) successful family transi- tion into a new blended family, (5) trust between members, (6) support from extended family (specifically Eleanor), (7) adequate income (current-dual career family), and (8) ability to seek help.

Interventions: Through assessment, nurses identify family strengths that foster health promotion and stressors that impede health promotion (Pender et al., 2011). Integration of the family perspective into assessment and planning facilitates more effective plans for health promotion (Wright & Leahey, 2013). Although the family has developmentally been suc- cessfully going through the remarriage cycle, it is expecting an additional life transition of adding a new family member. For this successful transition, the couple needs to define and share childrearing and household tasks. In order to resolve the current parenting and role conflicts, the couple needs to evaluate the current roles and could experiment with being responsible for the children alternately. After the birth of the baby, the couple may face a challenge with potential sibling rivalry. Spending time together as a family would promote family closeness for this blended family. When family members engage often in leisure activities, recreation, and exercise, they are able to cope with day-to-day problems better (Smith et al., 2009). The nurse should address the hurried family lifestyle and frequent unhealthful fast food eating habit.

Family Self-Care Contract: • Involve all family members (including children) in

establishing a family self-care contract. • Assist the family members to share their perceived family

health issues. • Assist the family to prioritize the goals. • Discuss the health promotion strategies.

Family Empowerment and Family Strengths-Based Nursing Care: • Commend the family strengths and base interventions

on the family strengths. • Enhance and mobilize the family strengths for problem

solving.

• Offer information/resources to help resolve parenting conflicts.

• Offer opportunities for the family members to express feelings about their family experiences.

Anticipatory Guidance and Offering Information: • Help the family to anticipate/prepare for life changes

after the birth of the baby girl. • Encourage the family to make the necessary adjustments

(e.g., role sharing). • Offer information about resources for health promotion

(e.g., smoking cessation, regular exercise).

Use of Rituals/Routines and Family Time: • Assist the family to plan for family time, couple time,

and individual family member alone time. • Explore common family leisure activities, recreation, or

exercise. • Discuss ways to reduce the hurried family lifestyle by

utilizing resources from extended family, church, or community.

• Assist the parents to establish bedtime routine. • Discuss family mealtime and ways to improve healthy

eating (e.g., reduction of fast food consumption, avoiding meals in front of TV).

Case Study: Matthews Family Setting: School health nurse’s office (high school). Family Nursing Goals: Work with the family to assist it for successful family transition and balance.

Family Members: • Andrew: father; 52 years old; part-time lecturer at a

local university (married Susan 18 years ago), first marriage.

• Susan: mother; 50 years old; full-time employed at a government office, second marriage with no children from the previous marriage.

• Sophie: oldest child; 17 years old; daughter, 11th grade. • Angela: middle child; 14 years old; daughter, 9th grade. • Joseph: son; 11 years old; son, 6th grade.

Family Story: Andrew (52 years old) and Susan (50 years old) have two teenage daughters, Sophie (17 years old) and Angela (14 years old) and one son, Joseph (11 years old). They have been married for 18 years.

(continued)

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228 Families Across the Health Continuum

Andrew is a part-time college professor. Susan has a full-time position as a director at a government office. When Andrew lost his full-time job 17 years ago, the couple moved in with Andrew’s mother (Lucy, age 86) and lived with her for more than 5 years until Susan’s income was sufficient to cover a mortgage and family expenses. Since moving out of Lucy’s house, the couple and children visit and have dinner with her every week- end, which has become the family routine. Children are expected to spend the night with their grandmother after the dinner; however, recently Sophie has refused to spend the night at grandmother’s house. Andrew’s sisters and their families live in the same state and visit Lucy at least once a month. Lucy has chronic health conditions, which cause unexpected emergency department (ED) visits (several times a year). After divorcing her ex-husband, Susan started to study in a graduate school in a different state, where she met Andrew. Because Susan’s family lives far away, she barely sees them and sometimes feels isolation and loneliness.

Andrew has been a part-time employee at local col- leges most of his life. While Andrew has spent most of his time working on computers at home (online teaching), Susan has worked at a local government agency. Since Andrew has produced minimum income, Susan provides for most of the family expenses.

The house has five rooms: master bedroom, Andrew’s office (he stays at home most of the time), and three rooms for the children. The girls used to share the same room until the family added an additional room last year so the children could have their own room. Since moving to a new room upstairs, Sophie brings her friends home fre- quently and a couple of close friends spend the night with her on weekends and during the summer break. The par- ents caught Sophie and her friend leaving the house se- cretly to meet a group of boys after midnight; Sophie was grounded for a month as a result. Last month, Susan found Sophie and her friend on the street (instead of going to school) while she was driving to work. Sophie’s boyfriend lives nearby, and they meet frequently at the park or each other’s home. Susan suspects that Sophie might have a sexual relationship with her boyfriend.

This is the first marriage for Andrew and second mar- riage for Susan. Susan was a survivor of domestic violence from the first marriage (which lasted less than 1 year). Because Andrew has strong family-centered values, they eat dinner as a family and once or twice a week with Andrew’s mother (Lucy). Sophie has started skipping the family dinners frequently, stating that she is not hungry. She also has been experiencing several fainting episodes

due to irregular eating habits. She frequently skips breakfast and lunch. The couple noticed that Sophie is eating fast food in her room or eating food after midnight by herself. Sophie’s eating pattern is getting irregular, and Angela has begun to imitate her older sister’s pattern and is refusing to participate in family dinners. Both girls are generally skip- ping breakfast, although Susan has made various attempts to get them to eat breakfast.

All children are in good health and have pleasant dispo- sitions. The children are generally happy, but loud at home and frequently fight and yell at each other. The girls argue over clothes and cleaning and are frequently cranky and difficult for the couple to deal with. Andrew and Susan sometimes argue because of different parenting styles: whereas Susan wants to raise the children in a Christian way, Andrew opposes Susan’s parenting belief. Sophie is becoming rebellious and fights with Andrew frequently. She is losing interest in her schoolwork.

Earlier in their married life, Susan mainly was responsi- ble for household chores. Sophie expressed resentment against her father regarding his minimal house chore contribution. Over the years, as a result of numerous heated arguments, Andrew agreed to share a significant portion of household responsibilities, including outdoor chores. Still, Susan spends weekends doing grocery shopping, laundry, housecleaning, and attending to the children. During the weekdays, the couple takes the children to various lessons (piano, violin, cello, art, karate, and soccer), which sometimes causes schedule conflicts and builds marital tension.

Andrew and Susan have mutual friends, but seldom participate in social gatherings as a couple. Susan usually takes the children to church events, and Andrew takes Joseph to soccer practices or sports events. Susan feels social support and comfort by attending church and church-related activities; but Andrew considers it as his wife’s overcommitment to religion. The family is affiliated with a Methodist church, which they used to attend every Sunday; Andrew stopped going to church 6 months ago. Sophie sometimes refuses to go to church as a family. Because of Susan’s full-time job and frequent family gath- erings with in-laws, and Lucy’s frequent ED or hospital admissions, Susan has limited time to socialize with her own friends. Over the years, Susan has experienced chronic fatigue and stress from caring for the children and handling family responsibilities. She also experiences insomnia and hot flashes due to menopause. Over the last 3 years, she has gained 30 pounds and is trying to lose weight without success. (See the Matthews family genogram in Figure 8-5 and family ecomap in Figure 8-6.)

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Family Health Promotion 229

Joseph 11 yr

Angela 14 yr

Susan 50 yr

D 23 yr ago

Andrew 52 yr

Lucy 86 yr

Sophie 17 yr

FIGURE 8-5 Matthews family genogram.

Strong relationship

Weak relationship

Tense relationship

Direction of energy flow

Church

Work

Sports extracurricular

activities School nurse

Friends School

Church

Health insurance

(no) Friends

Lucy (Andrew’s mother)

Extended family

Joseph

Andrew

Sophie

Susan

Angela

FIGURE 8-6 Matthews family ecomap.

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230 Families Across the Health Continuum

Assessment: Assessments of family members should be focused on the family as a whole. If Susan and/or Sophie’s health status is declining and/or if Lucy’s health deteriorates, the remaining members of family will experience difficulty adjusting to the changes. Andrew and Susan experience difficult family tran- sitions raising two teenagers who show rebellious attitudes and an unhealthy lifestyle.

Developmental and Family Life Cycle Theory: The family is a nuclear family and is in the stage of the “families with adolescents” because their oldest daugh- ter, Sophie, is in high school. The tasks required for this family include allowing adolescents to establish their own identities but still be part of the family; thinking about the future, education, jobs, and working; and increasing roles of adolescents in family, cooking, repairs, and power bases.

Family Systems Theory: Although the Matthews family looks healthy, there is an indication of moving to family vulnerability. When family members exhibit symptoms of an illness, other family members become aware that an individual has become ill. The Matthews family does not engage in activities to improve and maintain the health of individual members and promote family functioning. Andrew and Susan exer- cise infrequently. Although Susan takes the children to pediatric and dental (including orthodontic) clinics for reg- ular checkups and maintenance, Susan skips her annual checkup. Andrew is a heavy drinker and smoker. Since Andrew does not have health insurance, he only visits a clinic when he feels sick. He does not have a plan to pur- chase private health insurance due to financial reasons. Sophie has recently experienced fainting episodes. Susan suspects that Sophie is becoming sexually active, but So- phie denies it and refuses to receive the human papillo- mavirus (HPV) vaccine. Angela and Joseph usually stay home watching TV or using the computer instead of en- gaging in physical activities. Due to the overscheduled family calendar and work demands, they eat fast food fre- quently or use frozen meals. In addition, the family does not have regularly scheduled family meetings to problem- solve for family risk reduction. Susan’s increasing fatigue, Lucy’s frequent ED visits, and Sophie’s unhealthy lifestyle could lead to the increased vulnerability.

Bioecological Theory: The Matthews family consists of two parents and three chil- dren. Although the family does not live with Lucy, Lucy’s influence is significant. Andrew has African American

heritage with some European and Native American ancestors. Susan is biracial (50% Asian and 50% African American). The family lives in a one-story house with five bedrooms in a middle-class neighborhood. A community park is nearby the family residence, and the children hang out there with other children occasionally. The town is largely composed of white ethnicity with a small propor- tion of African Americans and Asian Americans.

Andrew’s sisters and their families live in the same state, and the family has a close relationship with them. The extended family gets together at least once a month. The Matthews family visits Lucy every week. Susan’s parents passed away and she has an older sister who lives out of the country. Susan and her sister communicate with each other via e-mail or phone, talking as needed once or twice a month. Susan has two brothers whom she usually sees once every other year.

Family Assessment and Intervention Model: Using the Family Systems Stressor-Strength Inventory (FS3I) of the Family Assessment and Intervention Model, the family strengths include (1) family values and en- couragement of individual values, (2) parents’ value of children’s education, (3) trust among family members, (4) support from extended family and church, (5) ade- quate income, (6) shared religious core, and (7) ability to seek help.

The major family stressors include (1) children’s poor/irregular eating habits (including skipping meals), (2) dissolved dinnertime routine, (3) insufficient couple time and family playtime, (4) insufficient “me time” (specifically Susan), (5) inadequate time with the children and spending too much time on television and computer, (6) overscheduled family calendar, (7) Lucy’s frequent ED or hospital admissions, and (8) lack of parenting skills and parental conflict. Some job stress exists because Andrew is still in a temporary part-time position.

Family Nursing Interventions: Healthy families have both together family time and individ- ual family member alone time (Denham, 2011; Imber-Black, 2011; Loveland-Cherry, 2011). The family experiences diffi- cult family transitions in raising two teenagers who show rebellious attitudes and an unhealthy lifestyle.

The family needs to plan “family time.” Having family activities or leisure time would bring a sense of together- ness. Considering the benefits of family mealtimes for families with teenagers, the family needs to make a concerted effort to establish family mealtime routines, and each member should make that family mealtime a priority and let no other activity interfere with it.

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Family Health Promotion 231

Families with teenagers may require help in meeting both the needs of the family as a whole and members’ individual needs. To find a balance, each family member should have time alone to develop a sense of self and to focus on growth. Andrew and Susan need improved cou- ple time by modifying the overscheduled family calendar. In addition, the family needs increased sharing of house- hold responsibilities. There is a need to redefine and negotiate the current family roles. Many of Susan’s current roles could be shared by other family members.

The parents do not seem to be good role models for the children relative to physical exercise and healthy eating style. Nurses need to address healthy lifestyle practices such as good eating habits, good sleep patterns, proper hygiene, and other positive health practices, as these are passed from one generation to another. If the couple initi- ates a health behavior change, the children would likely make a change too. For example, if Susan changes her eating patterns, perhaps by eating healthy meals, the children would change their eating patterns. The father’s involvement is especially important for this family as a role model for the son, who will be a teenager soon.

Family Self-Care Contract: • Involve all family members (including children) in

establishing a family self-care contract. • Assist the family members to share their perceived family

heath issues. • Encourage the family to discuss health promotion

strategies.

Family Empowerment and Family Strengths-Based Nursing Care: • List the family strengths and relate them to the character-

istics of a healthy family. • Use family strengths to balance and overcome existing

problems. • Offer opportunities for the family members to express

feelings about their family experiences. • Evaluate the current family roles and assist the family in

establishing family role sharing.

Anticipatory Guidance and Offering Information: • Offer resources to resolve the current health issues

(i.e., management of menopause symptoms and eating disorders).

• Offer information for health promotion (e.g., exercise and healthy eating for the whole family; healthy eating and safer-sex education for the girls).

• Offer resources for successful parenting for teenagers and conflict resolution.

• Assist individual members in health promotion. • Susan: stress management skills (e.g., exercise, Yoga,

time for self). • Andrew: weight loss strategies (i.e., exercise, healthy

eating, and alcohol and smoking cessation). • Children: time management (related to watching televi-

sion and using the computer) and physical activities.

Use of Rituals/Routines and Family Time: • Encourage the family to schedule weekly family time

and/or family meeting. • Help the family to explore family activities by consulting

local newspapers, family magazines, and community agencies for activities that might interest the entire family, and afterward encourage them to continue these activities.

• Assist the parents in the family to arrange for couple time and individual time.

• Discuss ways to decrease the children’s after-school activities.

Family Meals and Healthy Eating: • Assist the family to establish family meal routines. • Discuss ways to improve healthy eating (e.g., reduction

of fast food consumption). • Experiment with premade breakfast meals (e.g., protein

bars, fruit).

SUMMARY

This chapter provides an overview of family health promotion by defining family health and health promotion, introducing family health promotion models, and describing internal and external sys- tems that influence family health promotion. The two case studies presented in this chapter illustrate family health promotion assessment and family nursing intervention strategies. The following out- lines the major learning points emphasized in this chapter on family health promotion:

■ Fostering the health of the family as a unit and encouraging families to value and incorporate health promotion into their lifestyle are essen- tial components of family nursing practice.

■ Health promotion is learned within families, and patterns of health behaviors are formed and passed on to the next generation.

■ A major task of the family is to teach health maintenance and health promotion.

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■ The role of the family nurse is to help families attain, maintain, and regain the highest level of family health possible.

■ Family health is a holistic, dynamic, and complex state. It is more than the absence of disease in an individual family member or the absence of dysfunction in family dynamics. In- stead, it is the complex process of negotiating day-to-day family life events and crises, and providing for quality of life for its members.

■ Family health promotion refers to activities that families engage in to strengthen the family unit and increase family unity and quality of family life.

■ External ecosystem influences on family health include such things as the national economy, family and health policy, societal and cultural norms, media, and environmen- tal hazards, such as noise, air, soil, crowding, and chemicals.

■ Internal ecosystem influences include family type and developmental stage, family lifestyle patterns, family processes, personalities of family members, power structure, family role models, coping strategies and processes, resilience, and culture.

■ Health and family policies at all governmen- tal levels affect the quality of individual and family health.

■ Health promotion advertisements have generally targeted the more health-conscious middle class, rather than the vulnerable and underserved who are often the targets for alcohol and tobacco advertising campaigns.

■ Families who are flexible and able to adjust to change are more likely to be involved in health-promoting activities.

■ Vulnerable families are coping with a pileup of stressors and may be unable to focus on activities to enhance family health.

■ Low-income families may focus less on health promotion and more on basic needs, such as obtaining shelter, adequate food, and health care.

■ Middle-class families are skimping on health promotion, such as dental care, as they face current economic struggles.

■ Through verbal and nonverbal communica- tion, parents teach behavior, share feelings and values, and make decisions about family health practices.

■ Different cultures define and value health, health promotion, and disease prevention differently. Clients may not understand or respond to the family nurses’ suggestions for health promotion because the suggestions conflict with their traditional health beliefs and values.

■ A primary goal of nursing care for families is empowering family members to work together to attain and maintain family health by focusing on family strengths, competencies, and resources.

■ Health behaviors must be relevant and compatible with the family structure and lifestyle to be effective and useful to the family.

■ The goal of the family nurse is to facilitate family adaptation by empowering the family to promote resilience, reduce the pileup of stressors, make use of resources, and negotiate necessary change to enhance the family’s abil- ity to rebound from stressful events or crises.

■ Family health promotion should become a regular part of taking a family history and a routine aspect of nursing care.

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Walsh, F. (2011a). Resilience and mental health: Challenges across the lifespan. New York, NY: Cambridge University Press.

Walsh, F. (2011b). Normal family process: Growing diversity and complexity (4th ed.) New York: Guilford Press.

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CHAPTER WEB SITES Government Web Sites ■ The Affordable Health Act: Key feature of the law.

http://www.healthcare.gov/law/features/index.html

■ A more secure future. http://www.whitehouse.gov/healthreform/healthcare- overview#healthcare-menu. Retrieved December 8, 2012.

■ Dietary Guidelines for Americans—U.S. Department of Agriculture: www.cnpp.usda.gov/DietaryGuidelines.htm

■ Dietary Guidelines for Americans 2010—Healthy People: http://health.gov/dietaryguidelines/2010.asp

■ Dietary Guidelines for Americans 2015—Healthy People: http://health.gov/dietaryguidelines/2015.asp

■ Low-cost insurance for children and teens—Healthy Families—California: www.healthyfamilies.ca.gov

■ Services for Families—Administration for Children and Families: http://www.acf.dhhs.gov/acf_services.html

■ Providing health information to prevent harmful exposures and diseases related to toxic substances—Agency for Toxic Substance and Disease Registry: www.atsdr.cdc.gov

■ Preventing or controlling those diseases or deaths that result from interactions between people and their environment—National Center for Environmental Health: www.cdc.gov/nceh

■ Understanding how the environment influences the development and progression of human disease—National Institute of Environmental Health: www.niehs.nih.gov

Institution Web Sites ■ American Academy of Pediatrics: SafetyNet Resources

http://safetynet.aap.org

■ International Institute for Health Promotion: www.american.edu/academic.depts/cas/health/iihp

■ International Union for Health Promotion and Education: http://www.iowapublichealth.org/xr/ASPX/RecordId.10305/ rx/IphiRecordDetails.htm

■ Institute of Medicine, Board on Health Promotion and Disease Prevention: www.iom.edu/lOM/lOMHome.nsf/Pages/Health_Promotion_and_ Disease_Prevention

■ Research and Training Center on Family Support and Children’s Mental Health: www.rtc.pdx.edu

■ Berkeley Center for Working Families: http://wfnetwork.bc.edu/berkeley/outreach.html

■ Family Support America: www.familysupportamerica.org ■ National Council on Family Relations: www.ncfr.com ■ National Center for Families: www.nationalcenter.com

Other Resources ■ Health Promotion in Ontario, across Canada, and in other parts of

the world—Health Promotion Bookmarks/Hot Links: www.web.net/~stirling

■ Effective family programs for prevention of delinquency— Strengthening America’s Families—Office of Juvenile Justice and Delinquency Prevention: www.strengtheningfamilies.org

■ National Clearinghouse on Families & Youth—NCFY: www.ncfy.com

■ Families First: Making Families Last: www.familiesfirst.org ■ Managing Your Dual Career Family: www.dr-

jane.com/chapters/Jane133.htm

■ The National Partnership for Women and Families: www.nationalpartnership.org

■ Parents Without Partners: www.parentswithoutpartners.org ■ Helping to support and educate stepfamilies—Stepfamily Network

Inc.: www.stepfamily.net ■ Parenting and Family: home.about.com/parenting ■ Campaign for Tobacco-Free Kids: www.tobaccofreekids.org ■ Family mealtime—West Virginia University Extension Service:

http://www.wvu.edu/~exten/infores/pubs/fypubs/wlg129.pdf

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237

Families Living With Chronic Illness

c h a p t e r 9

Joanna Rowe Kaakinen, PhD, RN

Sharon A. Denham, DSN, RN

C r i t i c a l C o n c e p t s

■ Chronic illness is a global phenomenon with the potential to worsen the overall health of the nation’s people and limit the individual’s capacity to live well.

■ Social determinants of health and family health routines can increase the risks for a chronic condition.

■ Healthy lifestyle behaviors and early detection or screening may prevent some forms of chronic disease.

■ Chronic illness presents differing challenges to individuals and their family members during the life span.

■ Chronic illnesses that occur at birth or early childhood are most likely to be genetic and require special attention during developmental changes and across the life span.

■ Nurses must use evidence-based knowledge to empower families with the information, skills, and abilities to manage chronic diseases over the life course and prevent complications and comorbidities.

■ Family-focused care is important for prevention and management of chronic illness when it occurs; this involves intentional nursing action that meets both the individual and family needs.

■ Knowledge about disease self-management and adherence to a therapeutic medical regimen is essential for individuals and their family members if they are going to prevent additional complications.

■ Nurses use various actions (e.g., teach, coach, demonstrate, counsel) to assist individuals and their family members to cope with the stress of uncertainty, powerlessness, and anticipatory and ambiguous losses that accompany chronic illnesses.

The term chronos is the root word for “chronic” and refers to time. Chronic illness describes a health condition that lasts longer than 6 months, is not easily resolved, and is rarely cured by a surgical procedure or short-term medical therapy (Miller, 2000). When diagnosed with a chronic condition, it becomes necessary for the individual and his or

her family to learn to manage the disease or disor- der while living a quality life. Chronic illness not only affects the quality of life of the individual, but significantly affects all members of the family.

As individuals struggle to live with chronic con- ditions, family members are challenged to balance the needs of the ill family member with their own

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needs and the needs of the family as a whole. Indi- viduals with a chronic condition often battle to stay healthy, live active lives, retain a high quality of life, and prevent complications. This battle pri- marily is waged within the confines of the family. When an individual is diagnosed with a chronic ill- ness, whatever it might be, family members must incorporate unexpected changes into their roles and daily processes, manage disabilities imposed, and identify ways to do it with the resources they have available and within a context of uncertainty. Managing uncertainty is a significant concern for individuals and families living with chronic illness (Hummel, 2013a).

Chronic illnesses often require complex care, and many people have more than a single condi- tion. People with chronic illnesses can experience complications or comorbidities that make situa- tions even more difficult. For example, a person diagnosed with type 2 diabetes may also have hy- pertension, hyperlipidemia, and neuropathy. A per- son with Parkinson’s disease may also have a serious sleep disorder, constipation, chronic pain, and Lewy body dementia. Often, with a chronic ill- ness, individuals require care from multiple physi- cians, specialists, and a panoply of prescription drugs. Care would benefit from coordination across disciplines. The complex needs can create havoc for families with limited resources as they attempt to manage many thorny situations faced daily. The holistic approach of nurses is crucial to the individ- ual and family adaptation and management of living with chronic illness across the life span.

Many chronic diseases are altered and sometimes worsen over the life course. Chronic illnesses affect the lives of infants, children, adolescents, young adults, older adults, elderly, and the old-old. These diseases affect the physical, emotional, intellectual, social, vocational, and spiritual functioning of the person with the condition and family members. Wide variations exist in the ways different chronic illness conditions affect physical and mental health, employment, social life, and longevity.

Differences in the ways families accommodate a chronic condition also exist and are influenced not only by the level of disability and associated symp- toms, but also by individual and family factors. Fam- ilies differ in their perceptions about disability, in their backgrounds, and in their access to needed resources, for example. Care responses differ depending on whether the symptoms are constant (cerebral palsy),

episodic (migraine headaches), relapsing (sickle cell anemia), worsening or progressive (Parkinson’s dis- ease or certain types of cancer), or degenerative (Alzheimer’s disease or Rhett syndrome). Details of the unique individual situation vary further with the age of the individual, previous family experiences, level of disease complexity, individual’s motivation or ease in managing the illness, unique family member relationships, and distinct personalities and values. Regardless of the type of chronic illness experienced, however, one thing remains the same: various family members are likely to be involved at several levels. Because family members are the most enduring care providers, they might be viewed as the biggest re- source for individual care over time. Family members generally offer the constancy and continuity of care needed for the most optimal health outcome. Most health professionals come and go in the lives of persons with chronic conditions, offering medical management, education, and counseling for brief times. But it is generally family members that provide the needed ongoing and persistent care across time.

The purpose and focus of this chapter is to de- scribe ways for nurses to think about the impact of chronic illness on families and to consider strate- gies for helping families manage chronic illness. The first part of this chapter briefly outlines the global statistics of chronic illness, the economic burden of chronic diseases, and three theoretical perspectives for working with families living with chronic illness. The majority of the chapter de- scribes how families and individuals are challenged to live a quality life in the presence of chronic ill- ness and how nurses can assist these families. Two case studies are presented in this chapter: one a family who has an adolescent with diabetes and one a family helping an elderly parent and grandparent manage living with Parkinson’s disease. Although every family and illness experience is completely individual, many of the trials that these two families endure are universal to other families living with different chronic illnesses.

CHRONIC ILLNESS: A GLOBAL CONCERN

Chronic illness is a global issue and is the leading cause of mortality and disability in the world, rep- resenting 63% of all deaths (World Health Organ- ization [WHO], 2013a). Disease rates from these

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conditions are accelerating globally, advancing across every region and pervading all socioeco- nomic classes (WHO, 2013b). “Four of the most prominent chronic diseases—cardiovascular dis- eases (CVD), cancer, chronic obstructive pulmonary diseases and type 2 diabetes—are linked by com- mon and preventable biological risk factors, no- tably high blood pressure, high blood cholesterol and overweight, and by related major behavioral risk factors: unhealthy diet, physical inactivity and tobacco use” (WHO, 2013b).

Out of the 36 million people who died from chronic disease in 2008, 9 million were under the age of 60 years and 90% of those premature deaths occurred in low- and middle-income countries (WHO, 2013a). Cardiovascular disease is the num- ber one cause of death globally, with 30% of all global deaths being attributed to cardiovascular disease (WHO, 2013c). Cardiovascular disease morbidity and mortality could be reduced by ad- dressing risk factors such as tobacco use, unhealthy diet, obesity, physical inactivity, high blood pres- sure, diabetes, and raised lipids (WHO, 2013c).

Approximately 13% of global deaths are from cancer, with the top kinds of cancer deaths being lung, stomach, liver, colon, and breast cancer (WHO, 2013d). According to the WHO, tobacco use is the most important risk factor for cancer as it is estimated that it causes 22% of global cancer deaths and 71% of the global lung cancer deaths (2013d). In addition, tobacco use is the primary cause of chronic obstructive disease, such as em- physema and asthma, worldwide.

In 2012, approximately 347 million people glob- ally had diabetes and it is projected to be the sev- enth leading cause of global deaths by 2030 (WHO, 2013e). Worldwide, obesity has doubled since 1980 (WHO, 2013f). We are at the cusp of a chronic disease epidemic that if not attended to now will result in an even more serious crisis situ- ation in the near future.

Surveillance of Chronic Illness How do we know how many people have chronic illness and whether the problem is getting better or worse? In public health, one approach is the availability of surveillance data that are systemati- cally collected over time. This information is used to analyze a problem and help identify trends of change over time. In the United States and Canada,

the Behavioral Risk Factor Surveillance System (BRFSS) is a survey used to collect national infor- mation regularly. This is a state-based or province- based system of health surveys conducted through phone surveys. The survey tracks health risk factors and uses the findings to improve the health of the nation’s people. For example, in 2011 in the United States, 57.1% of the population had at least one al- coholic drink within the last 30 days and 18.3% of those in the nation were binge drinkers (BRFSS, 2011). The Centers for Disease Control and Pre- vention ([CDC]; 2011) defines binge drinking as a pattern of drinking that brings a person’s blood al- cohol concentration (BAC) to 0.08 grams percent or above. This typically happens when men con- sume five or more drinks, or when women consume four or more drinks, in about 2 hours. These base- line data have not previously been tracked, but can be looked at in future years. Over the next few years, surveys will collect additional data about alcohol use and the problem of binge drinking. Therefore, it will be possible to compare and analyze alcohol abuse and bring drinking as a risk factor on chronic illness trends and concerns.

Some other survey examples follow. Another survey instrument used to collect information about chronic illness risks is the National Health and Nutrition Examination Survey (NHANES, 2011) in the United States and the Food and Nutrition Surveillance in Canada. These national surveys are used to learn about the prevalence and distribution of chronic diseases and risk factors. The National Cardiovascular Data Registry is a database used to capture information about partic- ular individuals. The National Program of Cancer Registries in the United States and the Canadian Cancer Registry are both surveillance organiza- tions that focus on collecting, monitoring, and in- terpreting trends in cancer risks among a variety of populations. Large cohort studies, such as the Framingham Heart Study (2012), provide retro- spective information about groups of people that share similar experiences. The Canadian Tobacco Use Monitoring Survey (CTUMS) (2010) describes the smoking trends in Canada from 1999 to 2010. Other data regarding chronic diseases are identified through individual records, from insurance compa- nies, and with reviews of death certificates.

Internationally, surveys have revealed that the burden of chronic disease in adults and children is increasing in low- and middle-income countries,

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and despite increasing awareness and commitment to address chronic illness, global actions to imple- ment cost-effective interventions are inadequate (Alwan et al., 2010). The cause of the increase of chronic diseases in these countries is not easy to pinpoint. Most of the research on chronic illness factors has been conducted in developed countries.

Economic Burden of Chronic Illness Chronic diseases are not only common, they are costly. In 2011, the Harvard School of Public Health released a report called The Global Economic Burden of Non-communicable Diseases. This report noted that more than 60% of deaths (mostly car- diovascular diseases, diabetes, cancer, and chronic respiratory diseases) occur from noncommunica- ble causes (Bloom et al., 2011). This report indi- cated that the number of worldwide cases of all sites of cancer in 2010 was 13,313,111, and predic- tions are that by 2030 the number of cases will likely be close to 21,503,563. In 2010, cancer med- ical costs were $153,697 million, with nonmedical costs at $67,072 million, and income losses at $68,969 million. It is likely that these costs will double in the next 15 years.

In 2010, diabetes cost the global economy about $500 billion in U.S. dollars with projections ex- pected to be about $745 billion in 2030. The na- tional economic burden of Parkinson’s disease exceeded $14.4 billion in 2010 (approximately $22,800 per patient) (Kowal, Dall, Chakrabarti, Storm, & Jain, 2013). Indirect costs of Parkinson’s disease (e.g., reduced employment) were conserv- atively estimated at $6.3 billion (or close to $10,000 per person with Parkinson’s disease) (Kowal et al., 2013). When chronic illness is considered, it is use- ful to recognize that besides the associated dollar costs of various chronic diseases, there is also a loss in productivity and wages due to absenteeism.

In Canada, chronic diseases cost an estimated $90 billion a year in lost productivity and health care costs (Mirolla, 2004). Also in Canada, the economic burden of the three major lung diseases— cancer, asthma, and chronic obstructive pulmonary disease—was $12 billion in 2010 (Theriault, Hermus, Goldfarb, Stonebridge, & Bounajm, 2012). Given the growing number of elderly in Canada, this eco- nomic cost for chronic lung disease is expected to double by 2030. In Canada, the number of people smoking has declined; still, 37,000 people die every

year related to tobacco smoke, which is one person every 12 minutes (Health Canada, 2009). As in Canada, the number of people smoking in the United States is declining; yet each year in the United States, about 443,000 people die of a smok- ing-related illness, and smokers die 14 years earlier than nonsmokers (Centers for Disease Control and Prevention [CDC], 2011). Indirect costs, including loss of productivity when an ill person cannot work and the loss of productivity in the workplace when family leave is taken, was estimated to be $8.6 billion. There are approximately 2 million informal family caregivers with an economic burden contribution es- timated at $25 billion (Hollander, Lui, & Chappell, 2009; Keefe, 2011).

Economic costs for chronic illnesses such as dia- betes are continuing to increase. In Canada, the eco- nomic cost of diabetes was approximately $12.2 billion in 2010, which accounts for about 3.5% of public health care spending in Canada (Canadian Diabetes Association, 2009). According to a study commissioned by the American Diabetes Association (2008), in 2002 diabetes was reported to cost Amer- icans $174 billion annually. In 2007 this cost was es- timated to have increased by 32% for a total cost of $218 billion (Dall et al., 2010). A disproportionate percentage of these costs result from treatment and hospitalization of persons with diabetes-related com- plications. The study findings suggest that one of every five health care dollars is spent caring for someone diagnosed with diabetes. Financial costs for this disease are even greater when the family pays for additional health care needs, such as over- the-counter medication and medical supplies, addi- tional visits to optometrists or dentists, health complications that occur before the diabetes is di- agnosed, lost productivity at work for the individual and family members, and costs for informal caregiv- ing. Because of continued emphasis on treatment of disease and related complications, rather than pre- vention, the cost of diabetes continues to climb. In fact, only a small amount of the money spent on diabetes is on research, education, or prevention (Dall et al., 2010).

A study conducted to quantify the costs of chronic disease, the potential effects on employ- ers, the government, and the United States econ- omy found that the seven most common chronic diseases—cancer (broken into several types), dia- betes, hypertension, stroke, heart disease, pul- monary conditions, and mental disorders—affect

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133 million Americans (DeVol, 2008). These dis- eases have large-ticket economic costs of $1.3 tril- lion annually, along with potential for lost work and productivity. Findings from the DeVol (2008) study also have the following indications:

■ At the current rate, a 42% increase in cases of the seven chronic diseases is predicted by 2023, with $4.2 trillion in treatment costs and lost economic output.

■ Modest improvements in preventing and treating diseases could avoid 40 million cases of chronic disease by 2023, with the economic effect of chronic illness decreased by 27% or $1.1 trillion annually from the current cost.

■ Decreased obesity rates, a large risk factor linked with chronic illness, could result in productivity gains of $254 billion and avoid $60 billion in annual treatment expenditures.

Many with chronic illnesses fear they will be un- able to afford needed medical care, a fear not un- founded as medical costs for those with chronic illness tend to be higher. Families with a child or an adult member with a chronic condition often face economic challenges. For example, in diabetes management, although medical insurance may cover the costs of medications and supplies such as syringes and glucose testing strips, other health- promoting activities might require out-of-pocket expenses. A person with diabetes needs to eat a bal- anced diet, which requires the purchase of foods high in nutritional value, food that might be more expensive than less healthy foods.

Lay caregivers, although posing far less of an economic burden on the health care system, come with their own set of costs. Still, the cost of funding caregiver services and support is small compared with the value of their contributions (Feinberg, Reinhard, Houser, & Choula, 2011). Policy recom- mendations that can make these economically friendlier unpaid caregivers’ services (Gibson & Houser, 2007) less burdensome to families include the following:

■ Implementing “family-friendly” workplace policies (e.g., flextime, telecommuting).

■ Preserving and expanding the protections of the Family and Medical Leave Act of 1993 and updated in 2008 (U.S. Department of Labor, 2013).

■ Expanding funding for the National Family Caregiver Program, which was established in 2000 to provide funding to states and territo- ries based on the number of people over 70 years of age. It supports families and infor- mal caregivers to keep loved ones at home as long as possible (U.S. Department of Health and Human Services [USDHHS], 2012).

■ Providing adequate funding for the Lifespan Respite Care Act (2006). This program coor- dinated systems of accessible, community- based respite care services for family caregivers of children and adults of all ages with special needs (Administration for Community Living, 2013).

■ Providing a tax credit for caregiving. ■ Permitting payment of family caregivers

through consumer-directed models in publicly funded programs (e.g., Medicaid home, community-based services waivers).

■ Assessing family caregivers’ own needs through publicly funded home and community-based service programs and referral to supportive services.

Costs Associated With Children With Special Health Care Needs In addition to the health care provided in clinical settings, children with chronic special health care needs (SHCN) often require illness management and health maintenance in the home. The in- creased time and care demands of SHCN can make it difficult for family caregivers to be employed fully; emotional stress and financial burdens can re- sult. A child might need special therapy such as physical, speech, or occupational. Certain illnesses require constant out-of-pocket health care (such as autism, cystic fibrosis, or mental health needs) that can range from $2,669 to $69,906 per year, com- pared to $676 to $3,181 for families with non- SHCN children (Lindley & Mark, 2010). In addition, these families may have to pay more for everyday living expenses, such as water, heating, or special clothes or equipment, that are not included in their health plan. Parents of SHCN may lose pay as they need to take days off from work to care for their child (Lindley & Mark, 2010).

Parents working in low-income jobs often do not receive adequate health insurance benefits. Some families earn too much money to qualify for public subsidies but not enough money to cover the

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health care expenses of raising a child with SHCN. Compared with children in higher-income (and also lowest-income) households, children living in such “near-poor” families are more likely to have gaps in insurance coverage and more likely to be uninsured (Looman, O’Conner-Von, Ferski, & Hildenbrand, 2009). Eleven percent of uninsured children did not receive needed family support services related to chronic illness care, compared with 7.7% of children with public insurance and 2.7% of privately insured children (USDHHS, Health Resources and Services Administration, Maternal and Child Health Bureau, 2008). Families who lack health insurance are more likely to report that, although health and family support services are needed, they were not received. In addition, families can be greatly challenged as they try to bal- ance chronic illness costs against other member and household needs. Keep in mind that costs for the individual and his or her family can also be measured in loss of quality of life.

THEORETICAL PERSPECTIVES: WAYS TO UNDERSTAND CHRONIC ILLNESS

Theory provides a common language and foundation to understand abstract concepts and their connec- tions. This chapter explains three models that can be used by family nurses to explore the impact of chronic illness on families: Rolland’s Chronic Illness Framework, the Family Management Style Frame- work (Knafl & Deatrick, 1990, 2003), and the Fam- ily Health Model (FHM; Denham, 2003). These models provide unique perspectives on assessment, goal planning, nursing actions, and outcome evalua- tion using a family-focused point of view.

Rolland’s Chronic Illness Framework Chronic illnesses can be categorized by their traits, as outlined in Rolland’s (1987) Chronic Illness Framework (see Chapter 3). This framework out- lines how the following aspects come together in families and explains how families with similar illness stories adapt differently:

■ Onset of the illness (acute or gradual) ■ Level of disability resulting from the condi-

tions (capacitating or incapacitating)

■ Outcome of the illness (fatal, unpredictable, nonfatal)

■ Stability of the disease (progressive, constant vs. relapsing symptoms)

■ Time phase of the chronic illness (diagnosis, mid-illness, or terminal phase).

In Rolland’s framework, the above elements of chronic illness affect family functioning, strengths, and vulnerabilities. For example, although some chronic conditions involve primary disabilities, such as those occurring from birth anomalies, other conditions, such as strokes, myocardial infarctions, secondary blindness, or kidney failure, are acquired disabilities resulting from lifestyle patterns or de- layed or ineffective treatment of other conditions. The reaction and adaptation of the individual and family to a chronic condition differs according to whether the disability is considered on-time and expected versus off-time and unexpected. Likewise, although some people with chronic conditions have lives fraught with pain, depression, and mental or physical difficulties, others experience satisfying lives with only minimal difficulties.

Family Management Style Framework The Family Management Style Framework (FMSF) was designed to help nurses understand how families who have a child with a chronic con- dition integrate management of the chronic illness for the child into the everyday living needs and rou- tines of the family as a whole. The original work on the development of the FMSF was conducted by Deatrick and Knafl in 1990. This original work has been refined over the last 23 years to be one of the most significant longitudinal studies of a family as- sessment instrument. The assessment instrument helps nurses understand the needs of families who have children with specific chronic conditions, such as brain tumors (Deatrick et al., 2006), children un- dergoing palliative care at home (Bousso, Miski, Mendes-Castilla, & Rossato, 2012), and adolescents who have spina bifida (Wollenhaupt, Rodgers, & Swain, 2011). In addition to investigating families with children, Beeber and Zimmerman (2012) used the FMSF to increase understanding of challenges for families who have an older adult with dementia.

Understanding the family’s responses to a chronic condition provides ways for family nurses to offer effective interventions to meet both the needs of the individual and family. In this framework,

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there are five family management styles: thriving, accommodating, enduring, struggling, and floundering. The management style a family adopts is based on how the family members define the situation, man- age the situation and perceive the consequences of the situation. In the FMSF, the parents each define what the child’s chronic condition means for them individually and their family. Included in this defi- nition is how the parents view the child. Does the parent view the child as a child who has a health issue that can be managed, or does the parent focus

on the condition before the child and see the man- agement of the health condition as tragic and diffi- cult to manage? Influencing the definition are the parents’ personal beliefs about the cause, the seri- ousness, the predictability, and the course of the condition. Another component in defining the ill- ness is how disparate or similar the two parents’ per- ceptions are on how they view their child, the condition, parenting philosophy, and overall ap- proach to management. Table 9-1 briefly outlines the five family management styles.

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Table 9-1 Family Management Style Framework

View of the Child Thriving Accommodating Enduring Struggling Floundering

Parents view child from the lens of normalcy. They see the child as just as capable as other children. Their child has a chronic health condition that is incorporated into everyday life of the child and the family as a whole.

Parents view life as normal and incorporate the management of the health condition into everyday life of the child and family.

Parents mutually agree in their viewpoints and definition of the child and their management approach.

Management Behaviors Thriving Accommodating Enduring Struggling Floundering

Parents are confident in their management abilities and incorporate management regimen into the life of the family. They are proactive in their problem-solving approach.

Parents fluctuate in their view of the child between that of normalcy and tragic. Sometimes see them as capable and other times focus on vulnerabilities.

Parents vary on how they view life between normal or focused on the management of the health condition.

Parents usually share the same viewpoints, definition, and man- agement choices.

Parents are confident in their abilities but have the viewpoint of the management regimen as burden- some. They are usually proactive in problem solving, but sometimes are reactive.

Parents usually see their child from the lens of normalcy and being capable of living everyday life.

Parents tend to view life as normal and caring for the child with a chronic condi- tion as part of life.

Parents usually share the same viewpoints, definition, and man- agement choices.

Mothers are confident in their abilities to manage the chronic condition. Fathers are not as confident as the mothers in their abilities to manage the illness. They are usually proactive in problem solving, but sometimes are reactive.

Parents are inconsis- tent in how they view the child rela- tive to normalcy capabilities and vulnerabilities.

Parents are variable in how they view everyday life, but primarily see it from a negative lens and the management overtakes their every- day life as a family.

Parents do not share the same viewpoints and definition and do not agree on management ap- proaches, which creates much conflict between the parents.

Parental conflict is the overriding theme. Mothers see the man- agement as burden- some. Fathers express more confidence in their ability to manage the chronic condition. Both parents do not anticipate problems that are routine; therefore they are reactive to problems.

Parents have prima- rily a negative view of their child and see the situation as tragic. They see the child as not capable and as vulnerable.

Parents view the situation as a burden and have a sense of hateful- ness about having to manage their child’s chronic health condition.

Parents differ signif- icantly on how they view the child, how they define the situation, and the management plan.

Parents view the management regi- men as burden- some. They feel inadequate and overwhelmed. They are reactive to problems and often are overwhelmed or put into crisis mode when a problem occurs.

(continued)

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Table 9-1 Family Management Style Framework—cont’d

Perceived Consequences Thriving Accommodating Enduring Struggling Floundering

Parents view the child in the foreground and see the stress and hassles of the chronic health condition in the background.

Parents have a positive outlook and create a new sense of “normal” for the family as a whole.

Parents fluctuate in how they perceive the outcome and stress/strains of the chronic condition on the child and the family.

Parents usually place the child in the foreground and the stress and strains of the chronic condition in the background. In general, the par- ents have a positive outlook for the family as a whole.

Mothers typically have a negative view of the situation and future outlook for the child. Fathers tend to be more positive in their view of the future for the child.

Parents have a negative outlook and view of the future. They worry that their future as parents will be less happy and limited.

Managing the child’s condition is another piece to establishing a family’s management style. To manage illness, parents combine their philosophy of parenting with their beliefs about their ability to parent a child with a chronic condition. One man- agement approach may be that of being confident in their ability to parent and manage a chronic health condition. A second management approach may be when the parent views the child and situa- tion as burdensome. A third approach is when par- ents feel they are inadequate in their abilities to parent a child with a chronic condition.

Another element of management concentrates on how the parent balances the ability to manage the chronic health condition with other aspects of family life. Parental management behaviors linked with chronic illness are often aligned with their ability to establish consistent and effective treatment routines. Parents may not be well pre- pared to handle the caregiving responsibilities shortly after receiving a chronic illness diagnosis; they might require some coaching (Sullivan- Bolyai, Knafl, Sadler, & Gilliss, 2004). Stable routines that allow for balance or equilibrium in daily life are essential for optimal disease man- agement over time and through life course changes. For example, if the chronic illness re- quires dietary changes, family members must learn ways to balance personal food preferences and prior eating patterns with the medical needs of the ill member. Although specific management or routine activities may vary, a predictable and consistent routine seems essential.

Finally, the ways parents focus attention on and perceive consequences of a chronic illness is an important consideration in determining the fam- ily’s management style. Chronic illness can be viewed as a central feature of the family, an organ- izing focus, or a life aspect balanced with other responsibilities.

The FMSF not only identifies cognitive and be- havioral family aspects, but also points to factors that may be predictive of family strengths or problems (Knafl & Deatrick, 1990, 2003; Knafl, Deatrick, & Havill, 2012). Nurses using this model are urged to consider the unique needs of individuals within the family, those of family members or member dyads, and the family as a whole. Family nurses should use this model as a guideline that outlines ways to think about how a family is responding to having a child with a chronic illness. Nurses can use this model to help think of interventions that may help a family in the management of the situation and adaptation to living with a chronic condition. Nurses need to un- derstand member dynamics and family processes as they assess care needs, provide education, and offer counseling.

Family Health Model Connections between chronic illness and families are tied to ideas suggested within the Family Health Model (FHM) (Denham, 2003). This eco- logical model provides a lens to consider the multiple traits, interactive processes, and life ex- periences that influence the health and illness of

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interacting and developing persons. Families and individual members have infinite ways to define themselves, as they interact and exchange informa- tion with larger societal systems and institutions. The family household is the hub of action where members depart and return as individual members are nurtured and socialized. The FHM identifies member connections to each other and those be- yond the household boundaries that have relevance to chronic illness. The FHM uses three domains— contextual, functional, structural—in which nurses perform assessments, plan care, provide nursing ac- tions, and evaluate outcomes. This model encour- ages nurses to consider ecological factors relevant to the family members and their household. Things such as the neighborhood, community resources, community demographics, political milieu, and social environment are factors that also influence families’ responses to chronic illness and disease management, and affect outcomes.

Operational definitions suggest ways to describe the complex relationships among the biophysical and holistic aspects of a chronic illness and how these aspects affect family, health, and family health. In the FHM, health is defined as an adaptive state

experienced by family members as they seek to optimize their well-being and wrestle with liabilities found within self, family, households, and the vari- ous environments where they interact throughout the life course (Denham, 2003). This definition guides nursing practice roles useful for family care when a member has a chronic illness. Even when one has a chronic illness, health can still be possible and well-being can be maximized. Family health suggests that member transactions occur through system and subsystem interactions, relationships, and processes that have the potential to maximize processes of becoming, enhance well-being, and capitalize on the household production of health. Families strive to achieve a state where members are content with themselves and one another. That is, family health includes the complex interactions of individuals, family subsystems, family, and the var- ious contexts experienced over the life course. The household becomes the pivotal point for coping with health and family health needs.

Context Family health is depicted with contextual, func- tional, and structural dimensions (Fig. 9-1). The

Families Living With Chronic Illness 245

Social Construction of

Family Health

Contextual Aspects • Family members • Member traits • Household niche • Community context • Contextual systems • Time

Structure Aspects • Routine type • Routine characteristics • Routine meaning • Routine purpose • Routine participants • Timing of routines

Functional Aspects • Developing persons • Member relationships • Developing family • Core processes • Proximal processes • Ecocultural domains FIGURE 9-1 Contextual, functional,

and structural aspects of family care.

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contextual domain includes all of the environments where family members interact or have potential to be acted on, but also includes the characteristics or traits of the family (e.g., socioeconomic, educational attainment, extended kin relationships). The con- textual domain is affected by the internal household environment (e.g., membership traits and qualities, culture, traditions, values) and external household environment (e.g., neighborhood, community, safety, larger society, historical period, political con- text). An ecological model helps nurses understand that nested life aspects can challenge or strengthen one’s abilities to discern causes and outcomes. Over time, it is difficult to decipher the many powerful influencers; things overlap, intersect, and potentiate or negate important health factors.

The family household is a key family environment or context. The household refers to the physical structure(s), immediate neighborhood surround- ings, material and nonmaterial goods, and tangible and intangible family resources of the members that live together. As people age, they often reflect back on many households where they lived and the various influences impressed upon self from those settings. The family context pervades all life aspects and affects personal interactions, values, attitudes, access to medical resources, and availability of sup- port systems, and has influence on individual and family health routines. For example, a family living in poverty or lacking adequate health care insur- ance is unlikely to have the same access to medical care as a more affluent family. A rural family with a long tradition of cultural values about health or illness might minimize physical symptoms and be slower to seek medical care than an urban family with great confidence in science and the abilities of health care practitioners.

Function The functional domain refers to the individual and cooperative processes family members use as they in- teract with and engage one another over the life course. This domain includes individual factors (e.g., values, perceptions, personality, coping, spirituality, motivation, roles), family process factors (e.g., cohe- siveness, resilience, individuation, boundaries), and member or family processes (e.g., communication, coordination, caregiving, control). These dynamic factors mediate the actions of individuals, family subsystems, and families as a whole as they seek to attain, sustain, maintain, and regain health. The core family functions of caregiving, celebration, change,

communication, connectedness, and coordination alter as health and illness are faced; these are areas nurses can assess, plan nursing actions, and collabo- rate with family members to improve chronic illness outcomes (Denham, 2003). The experiences linked with chronic illness can test and burden the func- tional capacities of the family and its members. In some families, individual and group strengths can be rallied to address pressing concerns, whereas other families might have member conflict that threatens the capacities of effective disease management.

Structure The contextual and functional domains are the situ- ational and behavioral antecedents that family mem- bers use to construct family habits or patterns linked with health and illness outcomes. The third aspect of the FHM is referred to as the structural domain; it is composed of six categories of family health routines: self-care, safety and precautions, mental health be- haviors, family care, illness care, and member care- taking. Each routine category is comprised of complex multimember habitual actions that form in- teractive patterns that describe the lived health and illness experiences of family households (Denham, 2003). Family health routines are relatively stable but still dynamic actions or habitual patterns that can be recalled, described, and discussed from individual and family perspectives. What might initially appear as random or chaotic patterns to an outsider may rep- resent to family members regularity, purpose, and value of individual routines.

Although routines have unique qualities and involve all household members, some aspects of them change and evolve over time. This evolution can be a voluntary and intentional act or it can be a consequence of other things occurring in the family’s life. Family members tend to maintain the integrity of routines as long as they are viewed as meaningful. New life situations can cause some adaptations to occur, however. Health routines tend toward steadfastness, but the diagnosis of a chronic condition that demands medical manage- ment and the availability of new or different sup- port or resources (i.e., contextual factors) can challenge prior valued routines. During a chronic condition, if the family uses effective modes of communication, has abilities to share roles, and is comprised of resilient personalities, it might be more capable of handling the changes than those lacking these qualities. Family members might be able to cooperate and deconstruct ineffective

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routines and reconstruct new ones better than a disorganized family or one where member conflict rules. Health and illness routines are ways family members can support or thwart the management of a chronic illness. Family-focused nurses who partner with individuals and families can collabo- rate with them to plan care, strategize ways to im- plement changes, and evaluate outcomes. The creation and stability of healthy family routines and lifestyles can be strengthened through cooperative efforts. Family health routines are dependent on the human and material resources needed for the individual and family to make needed changes. Functional perspectives give insight into ways fam- ilies optimize health potentials and use resources to balance diverse and conflicting needs.

Well-being Family-focused nurses strive to assist individuals and families make the most of available resources to achieve health and well-being. Well-being, in the Family Health Care Model (Denham, 2003), is defined as a health state with actualized opportuni- ties, minimized liabilities, and maximized resources. Well-being includes many dimensions, including biophysical, psychological, emotional, social,

spiritual, and vocational. Well-being is achieved through accomplishment of family goals such as risk reduction, prevention, health maintenance, and self-actualization. Nurses aim to provide holistic care that enhances well-being and to partner with families to empower them when chronic illness is the concern. Nurses who provide family-focused care aid individuals and families to achieve their health goals. They also empower members to devise plans and identify ways to implement strategies, and evaluate whether goals are met. Nursing encounters become a means to target the household production of health, or holistically address related or poten- tially related health attributes or threats.

In chronic illness, family-focused care assists mul- tiple family members to adapt, accommodate, and use household resources to achieve well-being for the entire family. Based on the FHM, family-focused nurses can use what are identified as core processes to consider family aspects relevant to chronic disease management and identify ways to empower individ- uals and families to meet care goals (Table 9-2). The FHM suggests a variety of ways to understand what happens when a member has a chronic illness from contextual, functional, and structural perspectives (Denham, 2003). Table 9-3 identifies a number of

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Table 9-2 Core Family Processes and Chronic Illness

Core Processes Definition Areas of Concern

Caregiving

Cathexis

Celebration

Change

Concern generated from close intimate family relationships and member affections that result in watchful attention, thoughtfulness, and ac- tions linked to members’ developmental, health, and illness needs

Emotional bonds between individuals and family that result in members’ emotional and psychic energy investments into needs of the loved one

Tangible forms of shared meanings that occur through family celebrations, family traditions, and leisure time that might be used to com- memorate special times, days, and events; these times are often used to distinguish usual daily routines from special ones; they often occur across the life course and have special roles, responsibilities, and expectations

A dynamic nonlinear process that demands an altered form, direction, and/or outcome of an expected identity, role, activity, or desired future

Health maintenance

Disease prevention

Risk reduction

Health promotion

Attachment

Commitment

Affiliation

Loss

Culture

Family fun

Traditions

Rituals

Control

Meet expressed needs

Meanings of change

Contextual influences

Illness care

Rehabilitation

Acute episodic needs

Chronic concerns

Grief and mourning

Normative processes

Complicated processes

Religion

Hobbies

Shared activities

Compare and contrast

Similarities/differences

Diversity

(continued)

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248 Families Across the Health Continuum

Table 9-2 Core Family Processes and Chronic Illness—cont’d

Core Processes Definition Areas of Concern

Communication

Connectedness

Coordination

The primary ways children are socialized and family members interact over the life course about health beliefs, values, attitudes, and behav- iors, and incorporate or apply health information and knowledge to illness and health concerns

The ways systems beyond the family household are linked with multiple family members through family, educational, cultural, spiritual, political, so- cial, professional, legal, economic, or commercial interests

Cooperative sharing of resources, skills, abilities, and information within the family household, among members of extended kin networks, and larger contextual environments to optimize indi- vidual’s health potentials, enhance the house- hold production of health, maintain family integrity or wellness, and achieve family goals

Language

Symbolic interactions

Information access

Coaching

Cheerleading

Partner relationships

Kin networks

Household labor

Cooperation

Member roles

Family tasks

Problem solving

Decision making

Valuing

Coping

Resilience

Knowledge and skills

Emotional needs

Affective care

Spiritual needs

Family rules

Boundaries

Tolerance for ambiguity

Marginalization

Respect

Reconciliation

Forgiveness

Cohesiveness

System integrity

Stress management

Source: Modified from Denham, S. A. (2003). Family health: A framework for nursing. Philadelphia, PA: F. A. Davis, with permission.

Table 9-3 Assessment Using the Family Health Model

Categories to Assess Specific Areas Within Each Category

Contextual

Functional

Structural

• Developmental stage

• Family traits

• Availability of health insurance

• Access to care

• Demographics (age, education, sex, employment)

• Social support

• Culture and ethnicity

• Political, historical, and environmental factors

• Stressors

• Coping skills

• Family roles

• Member responsibilities

• Communication patterns

• Illness characteristics

• Family organization or chaos

• Routines established

• Ability and willingness to alter routines

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areas a family nurse might assess using this concep- tual model.

PREVENTION OF CHRONIC ILLNESS THROUGH HEALTH PROMOTION

Many chronic conditions are preventable. Others, though not preventable, may be able to be delayed, thus ensuring more quality life years. Prevention is an important factor to consider when understanding chronic illnesses. For example, the CDC (2008b, p. 2) has identified several ways preventive financial investments can make important differences:

■ For each dollar spent on water fluoridation, $38 is saved in dental restorative treatment costs.

■ For each dollar spent on the Safer Choice Program (a school-based HIV, other sexually transmitted diseases, and pregnancy preven- tion program), about $2.65 is saved on medical and social costs.

■ Every dollar spent on preconception care programs for women with diabetes can re- duce health costs by up to $5.19, and prevent costly complications for mothers and babies.

■ Implementing the Arthritis Self-Help Course among 10,000 individuals with arthritis will yield a net savings of more than $2.5 million while simultaneously reducing pain by 18% among participants.

In looking at gaps of current data collection sys- tems, the Institute of Medicine (2011) suggests that individual and collective data are needed that helps understand the continuum of prevention, disease progression, treatment options, and their out- comes. A troubling aspect of all surveillance efforts is that we have little to no information about family roles, inputs, or outcomes in the prevention or management of chronic illness.

Nonetheless, chronic illness is often linked to behavioral and environmental risk factors that could be effectively addressed through prevention programs. For example, the increasing rates of obe- sity, leading to several chronic complications, could be prevented with changes in dietary and exercise behaviors and changes in our environment that en- courage exercise. An optimistic scenario including weight reduction, healthy eating, a more active

lifestyle, continued decrease in tobacco use, im- proved early detection, fewer invasive treatments, and quicker adoption of proved therapies could cut chronic illness treatment costs by $217 billion per year by 2023 (DeVol & Bedroussian, 2007). These changes could reduce the climbing chronic illness rates and reduce related complications through preventive care.

The Institute of Medicine (2012) suggests taking a “health in all policies” approach to federal regu- lations, legislation, and policies that improve op- portunity for health and physical function for those living with chronic illness. This report also recom- mends that community-based services available for persons with chronic disease align with health care services and insurance reform legislation. If such an approach were to be taken, legislators and those involved in policy writing would be more conscious about health risks and the ultimate costs resulting from legislative decisions. To curb the chronic ill- ness epidemic, it is critical to initiate innovative ap- proaches in the ways these diseases are prevented and managed now.

HELPING FAMILIES LIVE WITH CHRONIC ILLNESS

Family-focused nurses understand that when indi- viduals have a chronic illness, whether they are young or old, family is always involved in the care. Family members influence decision making, engage in family planning, and play roles that positively and negatively influence disease management.

Some people manage their chronic illness with- out much difficulty or help from others, whereas others require a great amount of assistance and significant family involvement. Many need little medical care, but others require extensive medical services that may include care from special health practitioners, regular treatments or testing, mul- tiple medicines, or intense therapies. Life can be completely disrupted when confronting long- term or chronic illnesses that affect physical abil- ities, appearance, and independence. Diminished endurance capacities; continual discomfort in physical, emotional, and social realms; and finan- cial problems are just a few of the challenges fam- ilies face. New medical procedures, diagnostic tests, screening, and pharmaceuticals have im- proved health and the ability to live with chronic

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conditions and extended life span so families are living longer with chronic illness.

The Institute of Medicine (IOM) (2012) con- sidered what it takes to live well with chronic ill- ness and determined that it requires more than medical care and pharmaceutical treatments. The IOM suggests that there are a variety of health determinants that affect the life course (i.e., biol- ogy, genes, behavior, coping responses, physical environment, sociocultural context, peers, and family). Some of these aspects are linked with learned behaviors, family households, and the communities where families live. One might clas- sify persons as healthy, at risk, chronically ill, functionally limited, disabled, or nearing the end of life. These health outcomes are influenced by a number of factors; some are intrinsic or con- trolled by the individual, and some are beyond the individual and live in the larger society (e.g., environmental risks, public policy, population surveillance, media, public health, community or- ganizations, health care, social values). This sec- tion focuses on how to work with families to support the person with the illness to participate in his or her own self-management, and ways to help families adapt to living with a chronic illness and working with the family care provider.

Helping to Support Self-Management Self-management is a crucial aspect to quality liv- ing and successful management of a chronic ill- ness. Self-management includes self-efficacy, self-monitoring of illness, and symptom manage- ment that is conducted by self or as the person directs others to do for him or her (Richard & Shea, 2011). Self-management is both a process and an outcome of family nursing care. The “Self- Management Support for Canadians With Chronic Health Conditions” report (Health Council of Canada, 2012) outlines the following four recom- mendations to help the Canadian health care sys- tem support people living with chronic illness in a more systematic way (p. 7). These recommenda- tions should be applied to those living with chronic illness regardless of country:

■ Create an integrated, system-wide approach to self-management support.

■ Enable primary health care providers to deliver self-management support as a routine part of care.

■ Broaden and deepen efforts to reach more Canadians who need self-management supports.

■ Engage patients and informal caregivers as a key part of any systematic approach.

Family nurses work with the individual and fam- ily to support self-management of the illness. For example, adolescents/young adults who engage in self-management at the time they transition from pediatrics to adult medical care are known to have improved health outcomes (American Academy of Pediatrics, 2011; van Staa, van der Stege, Jedeloo, Moll, & Hilberink, 2011).

Diabetes is a clear illustration. Diabetes self- management, much like self-management for any chronic illness, entails adhering to a prescribed medical regimen and making lifestyle behavior changes. Most of these actions largely occur out- side nurses’ and other health professionals’ obser- vation. Self-management calls for integration of prescribed treatments into the daily experience. Self-management requires highly motivated indi- viduals to follow medically prescribed treatments and protocols that may not be understood fully. This means that the individuals must have some confidence that their doctors and other practition- ers know what they are doing and trust that fol- lowing these directions will improve one’s quality of life.

The last several decades have produced a large body of research findings that suggest that self- efficacy is an important factor linked with a will- ingness to participate in specific behavior (Richard & Shea, 2011). Persons with higher self-efficacy are more likely to engage in more challenging tasks, set higher goals, and achieve them (Bandura, 1977). Individuals with the disease and their family mem- bers will have different levels of self-efficacy and may differ in their level of readiness for change. Nurses who understand self-efficacy and readiness to change can use these concepts as they collabo- rate with families to set goals and plan strategies for meeting them. Nurses assess families on their perceptions and abilities to make the changes and then assist them as they agree on what changes they can make together. Nurses can explore family members’ desires and confidence in their ability to alter lifestyle habits that might support their family member with a chronic illness to adhere to lifestyle changes, such as diet. A nurse-led family confer- ence might be a way for the nurse to share more

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information about why changes are needed, bene- fits that might be realized, and risks if no changes are made. Some agreement might arise on trying a few things differently each week and moving to- ward the goals by using small steps each week. Nurses should not be simply telling the family what needs to be done, but asking them what they need, identifying their concerns, and helping them iden- tify what they believe will be a plan they are willing to achieve together.

Too often, persons with chronic conditions see numerous clinicians who order treatments without consulting how they might affect the whole family. Individuals and families benefit from coordinated care; this means providing treatments and medical visits in ways that integrate services and relevant communication among those providing care. Goals of coordinated care include improving health out- comes, identifying risks or problems early, avoiding crises, and ensuring cost-effectiveness of service delivery. Poorly coordinated care has risks for pre- ventable health complications, conflicts between pro- fessionals, increased stress for the individuals and their families, unnecessary hospitalizations, added ex- penses, and even death. Persons who experience even a single chronic condition can receive conflicting information, numerous diagnoses, or multiple med- ications by different professionals. Nurses are in po- sitions where they can facilitate care management and help individuals and family members sort out the conflicting information or directions in developing a family-focused management plan. By helping the family to develop a management plan, the nurse em- powers the family and the person with the chronic illness to participate in and control self-care, with the goal of improving health outcomes for all members of the family.

Family Adaptation Living with chronic illness is described by Arestedt, Persson, and Benzein (2013) as an ongoing process of adaptation, co-creating ways for the family members, both individually and as a family, to achieve a sense of well-being. By using this in- depth phenomenological hermeneutic analysis, family nurses can work with families to help them adjust to everyday living by developing a new rhythm of adaptation.

■ Co-creating a context for living with illness: When families are confronted with the reality

of living with a family member having a chronic illness, they spend time learning how to develop different ways of accomplishing the tasks of the family and meet the needs of the family members. They accomplish this through discussion of the situation. After this initial adjustment and the establishment of how to maintain daily functioning, families report that the illness and situation is not always on their minds.

■ Communicating the illness within and out- side the family: Families learn to balance discussion about the illness, the situation, and the future with chronic illness with other life events for the individual family members and the family as a whole.

■ Co-creating alternative ways for everyday life: Families learn to operate at a slower pace than before chronic illness. Families note that they are more focused on the present as there is an ever-present awareness of an uncertain future.

■ Altering relationships: The members of the family develop or adapt their relationships to include chronic illness as they have to get to know each other in a different way. In some situations, family members are interact- ing more often than before the onset of the chronic illness. In other situations, families report being stronger and pulling together more when the illness has exacerbations.

■ Changing roles and tasks: All roles in the family require adjustment when living in the midst of chronic illness. The family struggles to reestablish a balance in getting the needs of the family accomplished.

With many chronic illnesses, the family is con- tinually shifting between illness being the primary focus of the family and wellness being the primary view of the family. For example, when there is an exacerbation of the illness that requires the family member to be hospitalized, the family is reminded the illness is present and needs attention. At other times, the family is focused on the wellness of everyone by, for instance, having family dinner to- gether once a week. Co-creation of ways the family adapts and flows with this movement allows for some overlapping of these two family situations (Paterson, 2002). Nurses working with families liv- ing with chronic illness who understand this process of evolving family adaptation empower

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families to move from a viewpoint of “victim” of circumstances to a viewpoint of “creator” of cir- cumstances (Arestedt et al., 2013; Paterson, 2002).

One person’s chronic condition has great po- tential to influence the lives of many others. Those living with a family member with a chronic disabil- ity can become fatigued by the constant vigilance required to perform normal everyday activities of daily living and the stress of uncertainty (Hummel, 2013a). This fatigue is influenced by the volume of help required, the emotional strain that accom- panies the daily hassles, and the relationship strain of constantly giving to another. One aspect of fam- ily nursing that is crucial to helping these families is assisting the family members to adjust to new roles, such as caregiver and care receiver. Nurses can help families explore who does what role in the family and how to use resources to help the family function well by using outside resources to fill some of the family roles. See Chapter 4 for more detail about how to work with families about role negotiation.

Family Caregiving Family caregiver is a crucial role in providing sup- port for those living with chronic illness. Several chapters in this book touch on family caregivers caring for family members with chronic illness. For example, Chapter 16 addresses family caregiving for families living with mental health concerns. Chapter 15 focuses on working with families who have an aging family member, and Chapter 10 of- fers suggestions about working with families when a member is experiencing palliative care or end- of-life care. Glasdam, Timm, and Vittrup (2012) reviewed 32 studies of professional interventions on family caregivers. The researchers found that few studies target the caregivers of family members with cancer, cardiovascular disease, or stroke. They conclude that health care providers lack knowledge about the effects of interventions on caregivers. There is a need for clear descriptions of the inten- sified interventions used with caregivers and the outcomes achieved in order to identify the benefits of nursing actions for caregivers. It is clear, how- ever, that soon after the diagnosis of a chronic ill- ness of a family member, caregivers must become proficient in many areas, including managing the illness, coordinating resources, maintaining the family unit, and caring for self. Nurses assisting

families can incorporate the following educational and counseling needs into a treatment plan, making clear who is responsible for what in the family:

■ Monitoring conditions and behaviors ■ Interpreting normal and expected behaviors

from different and serious ones ■ Providing hands-on care ■ Making decisions ■ Developing care routines ■ Problem solving ■ Teaching self-care management

This chapter will focus on two populations in terms of caregiving: one is young children provid- ing care to the adult family member living with a chronic illness and the second is families who have a child with a chronic illness.

Child Caregiving for an Adult One population that is growing around the world is that of young children providing care for a chroni- cally ill adult. In the United States, there are approx- imately 1.3 to 1.4 million child caregivers who are between the ages of 8 and 18 (Hunt, Levine, & Naiditch). The following list provides an estimated number of children providing care for adult family members in countries or commonwealths of the United Kingdom (Caregivers Trust, 2012):

■ England: Nearly 5 million people are care- givers, and of these, 145,000 are children.

■ Scotland: There are 657,000 caregivers in Scotland, and of these, 16,701 are children.

■ Wales: There are 340,745 people who are caregivers, and of these, 11,000 are children.

■ Northern Ireland: There are 185,066 people who are caregivers, and of these, 2,300 are children.

In Australia, it is estimated that there are 300,000 young caregivers, 150,000 of them under the age of 18 years (Australian Bureau of Statistics, 2009). A 2010 Canadian high school study of 483 ethni- cally diverse students in grades 8 through 12 found that 12% of youth between the ages of 12 and 17, with a mean age of 14 years, self-identify as “Young Carers” (Marshall & Stainton, 2010). In response to a rising number of young caregivers, Canada created an action task force to investigate the invis- ible population of the young caregiver population and its needs (Bednar et al., 2013). In a similar study in the United States, Bridgeland, DiIulio, and

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Morison (2006) found that a third of high school dropouts (32%) said they had to get a job and make money; 26% said they dropped out because they became a parent; and 22% said they had to care for a family member. Many of these young people re- ported doing reasonably well in school and had a strong belief that they could have graduated if they had stayed in school. Childhood caregiver statistics in the United States identified by Hunt et al. (2005) are listed below:

■ Three in ten child caregivers are ages 8 to 11 (31%), and 38% are ages 12 to 15. The remaining 31% are ages 16 to 18.

■ Child caregivers are almost evenly balanced by gender (male 49%, female 51%).

■ Caregivers tend to live in households with lower incomes than non-caregivers, and they are less likely than non-caregivers to have two-parent households (76% vs. 85%).

There are both negatives and positives to being a young family caregiver. The positive effects are that they report feeling appreciated for their help and that they like helping their family member (Hunt et al., 2005). Negative outcomes from assuming the family caregiver role at a young age are reported in the lit- erature, however. Young caregivers between 8 and 11 years old are more likely than non-caregivers to feel at least some of the time that no one loves them (Hunt et al., 2005). A 2012 study found significant effects on caregiving teens’ mental health, specifi- cally, significantly higher risk for anxiety and depres- sion (Cohen, Greene, Toyinbo, & Siskowski, 2012). Nurses should be aware that there are several young caregiver support groups that are offered online and there are camps offered for these children where they can have some carefree time away from family re- sponsibility. Family nurses should inquire about the involvement of children and teens in caring for fam- ily members with chronic illness.

The population of young caregivers remains an invisible population and the exact numbers are un- known. Some reasons this caregiver population is growing include the following:

■ Decreasing family size ■ Geographical dispersion of families ■ High divorce rates ■ Increasing number of single parents ■ Multiple marriages and reconstituted families ■ In African countries, it may be related to

number of adult deaths due to AIDS

These students and young caregivers live a stressful life that has many more responsibilities when compared to age peers. In addition, the young caregivers are found to have significantly more anx- iety and depression and less satisfaction when com- pared to non-caring age-related peers (Cohen et al., 2012). Caregiving has a negative influence on the emotional well-being of youth with dual student- caregiver roles (Cohen et al., 2012).

The UK countries have several major national laws that provide for a wide range of services and programs that include financial allocations to assess vulnerable children, provide community- and home- based services for care recipients, families, and youths, and have several support programs and re- sources for youth caregivers. The United States has no national policies or programs to support this vul- nerable population. The American Association of Caregiving Youth (2013) was established by Connie Siskowski, a nurse. This is the only program in the United States that addresses any concerns about this vulnerable population. She designed an after-school program to help these young caregivers meet others living in similar situations, learn how to provide care for their family member safely, and learn how to seek help or resources (American Association of Caregiving Youth, 2013). This nurse also designed a week-long onsite summer camp for these young caregivers to attend so they could experience a nor- mal childhood event and get away from the stress of everyday caregiving.

As this population of vulnerable caregivers con- tinues to grow, one role of the family nurse is to be alert and recognize when a young child is providing care for an adult in the family. When this situation is present, the nurse should work to find supports for this caregiver and remember that the caregiver is also a child or adolescent who has normal developmental needs in addition to this caregiving family role.

Families Caring for Children Living With a Chronic Illness According to the National Survey of Children with Special Health Care Needs 2009–2010 (Data Re- source Center for Child and Adolescent Health, 2012), 11.2 million children from 0 to 17 years of age have special health care needs, which trans- lates to one in five American households. Chil- dren with special health care needs (SHCN) have a wide range of conditions and risk factors that underlie many shared health conditions. The top

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six health issues for children with SHCN, in order of prevalence, are as follows: 48.6% have allergies, 35.3% have asthma, 30.2% have attention-deficit disorder/attention-deficit hyperactivity disorder, 17.6% have developmental delays, 17.1% have anxiety, and 13.3% have behavioral problems (Data Resource Center for Child and Adolescent Health, 2012). Most of these top issues are mental health in nature, which differs from the top chronic illnesses encumbering adults noted earlier in the chapter.

Children with SHCN are like typical children in many ways: they are actively growing and devel- oping, enjoy playing and being with peers, and thrive in cohesive family environments. Children with chronic conditions, however, have limitations that affect daily lives and contribute to challenges unique from peers without chronic conditions. Over half of the children with special health care needs report that they experience four or more functional disabilities that are related to everyday living, such as respiratory problems, eating prob- lems, vision issues, difficulty using their hands, and communication issues.

Health care costs that exceed $250 out-of-pocket are often perceived by the family as burdensome, and even lower amounts affect families with lower socioeconomic status (Lindley & Mark, 2010). Twenty percent of families of children with SHCN report that they spend 2 to 7 hours a week providing health care for the child at home and 14% spend more than 11 hours a week. Caring for the child at home is associated with a significant increase in the odds of having a family member reducing or quit- ting employment outside the home because of the child’s health care needs (Looman et al., 2009).

Families with children with SHCN have many needs, caregiving and otherwise. Studies have shown that mothers of chronically ill children often have greater levels of distress than fathers, a concern thought to be related to the greater care demands placed on the mothers (Spilkin & Ballantyne, 2007). It is also not unusual for parents to differ in their perceptions about the impact of the chronically ill child on the family as a whole and on the marital relationship. Although mothers may find that care- giving demands influence their role performance, fathers may perceive the impact most in their expression of feelings and emotions (Rodrigues & Patterson, 2007). A study of 173 parent dyads of children with chronic conditions found that moth- ers’ marital satisfaction was influenced more than fathers’ by perceptions about the effects of their child’s condition on the family (Berge, Patterson, & Rueter, 2006). Parents’ perceptions of the negative effects of the child’s chronic condition were meas- ured in terms of family social strain, role strain, and emotional strain. If parents differed in perceptions about the effects of the illness on the family or mar- ital relationship, an increase in stress and frustration resulted. Nurses can assist couples to identify dif- ferences in perception between parents, and facili- tate discussions about the effects on roles and the benefits of sharing caregiving tasks (Berge et al., 2006; Spilkin & Ballantyne, 2007).

Family-focused care involves active participation between families, nurses, and other health care pro- fessionals. Family-focused care supports partnering or collaborative relationships that value and recog- nize the importance of family traditions, family beliefs, and family management styles. When con- sidering the general population of children with SHCN, approximately 35% of them received care that lacked one or more of the essential compo- nents of family-centered care (USDHHS, Health Resources and Services Administration, Maternal and Child Health Bureau, 2008), which are outlined in Table 9-4.

In general, families raising children with chronic illnesses face the joys and challenges that most typical families face, and are as unique and varied as fam- ilies of typically developing children (Drummond, Looman, & Phillips, 2012). These families want their children to be happy, have a high quality of life, grow, and develop into caring adults who can live in- dependently and contribute to society. These families

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Families Living With Chronic Illness 255

Table 9-4 Percentage of Children With Chronic Conditions Without Family-Centered Care

Family-Centered Care Component Percentage

Health care provider does not usually spend enough time with the child

Health care provider does not usually provide enough information for the family

Health care provider does not usually make parent feel like a partner in the child’s care

Health care provider is usually insensitive to the family’s values and customs

Health care provider does not usually listen carefully to family’s concern

Child does not have an interpreter when needed*

21.3

16.9

12.4

11.1

11.2

43.7

*This applies only to children who needed interpreter services (N = 36,018).

face additional stressors, and many researchers ac- knowledge that the children and parents in these families who care for their children at home are at increased risk for stress-related health conditions and psychosocial problems (Barlow & Ellard, 2006; Berge et al., 2006; McClellan & Cohen, 2007; Meltzer & Mindell, 2006; Mussatto, 2006). Box 9-1 provides a list of stressors likely to be experienced by families caring for a chronically ill child. De- spite the risks for problems, however, most chil- dren with chronic conditions and their families, including siblings, demonstrate incredible re- silience and capacity for finding positives amidst the challenges.

One approach to helping these families is to help them understand the concept of normalization.

Normalization is a lens through which families of children with chronic conditions focus on normal aspects of their lives and deemphasize those parts of life made more difficult by chronic conditions (Bowden & Greenberg, 2010; Protudjer, Kozyrskyi, Becker, & Marchessault, 2009; Rehm & Bradley, 2005). The following five attributes of normaliza- tion for families of children with chronic condi- tions offer foundational knowledge for nurses working with such families (Deatrick, Knafl, & Murphy-Moore, 1999):

■ Acknowledge the chronic condition and its potential to threaten their lifestyle.

■ View all the management of the chronic illness as just normal daily activities in the family.

■ Engage in parenting behaviors and routines that are consistent with a normalcy lens.

■ Develop treatment regimens that are consis- tent with normalcy.

■ Interact with others based on a view of the child and family as normal.

Although normalization is a useful conceptual and coping strategy for many families of children with chronic conditions, in families whose children have both complex physical and developmental disabili- ties, normalization as a goal may be neither possible nor helpful (Rehm & Bradley, 2005). When devel- opmental delays compound the effects of a child’s physical chronic conditions, a family’s ability to or- ganize and manage its daily life is affected signifi- cantly. In this case, parents often recognize normal and positive life aspects, acknowledge the profound challenges faced by their family, and accept a “new normal” (Rehm & Bradley, 2005). This capacity

BOX 9-1 Potential Stressors When Raising a Child With Chronic Health Conditions

■ Care regimen in meeting daily caregiving demands ■ Grief, loss of anticipated child events or activities ■ Financial and employment strains ■ Uncertainty about future ■ Access to specialty services ■ Reallocation of family assets (e.g., emotional, time,

financial) ■ Recurrent crises and crisis management ■ Foregone leisure time and social interactions ■ Social isolation because of stigmatizing policies and

practices ■ Challenges in transporting disabled children (e.g., when

architectural and other barriers restrict their inclusion) ■ Physiological stress of caregiving

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to normalize adversity and to define challenging experiences as manageable and surmountable fosters family resilience.

Families with members with chronic conditions, especially those whose conditions are complicated and require care from multiple specialists, often spend a great deal of time interfacing with multiple specialists and systems. For example, a family who has a child with Down syndrome may require regular visits for cardiac, ophthalmological, developmental, and immunological evaluations, physical and occu- pational therapy, and orthopedic assessments. In ad- dition, parents typically spend a significant amount of time and energy advocating for their child within the school system, attending individualized educa- tional program (IEP) meetings, meeting with aca- demic support professionals, and coping with worries about what is occurring when the child is out of sight (National Association for Down Syndrome, 2012).

In addition, children with chronic conditions still need well-child care similar to those without such an illness. Further, these children are suscep- tible to other infectious diseases or risks for in- juries. It is important for children with chronic conditions to receive regular health maintenance visits with a primary care provider for anticipatory guidance, routine illness, and injury prevention dis- cussions. Parents of children with chronic condi- tions expect to discuss illness concerns during the well-child care visit. Some providers may expect that care for chronic disease management will de- crease opportunities for wellness discussion, but a study of primary care provision for children with SHCN demonstrated the opposite (Van Cleave, Heisler, Devries, Joiner, & Davis, 2007). For par- ents of children with SHCN and other parents, as more illness topics were discussed, more preven- tion topics were also discussed.

Researchers who have interviewed parents of children with chronic conditions report some con- sistent expectations that parents have for their en- counters with professionals. Especially important is parents’ need for information and mutual trust (Nuutila & Salantera, 2006). Parents want informa- tion to be communicated clearly, honestly, respect- fully, and with empathy. To be able to give advice and guidance applicable to the lives of a family, health professionals need to know about the family’s everyday living and life conditions, and must recog- nize parents’ abilities and skills in caring for their child (Nuutila & Salantera, 2006). Whether the chronically ill person is a child or an adult, family

members require useful information that can be ap- plied directly to real family needs. A trusting envi- ronment must exist, with easy information exchange, communication directed toward meeting individual and family needs, and respect.

Families want information that will help them provide adequate care for their member with chronic illness and that will help them to anticipate future needs. A decade ago, Ray (2003) noted that excellent informational resources are available, but are not used by families because professionals as- sume that someone else has provided the family with the information. Parents’ and others’ needs for in- formation and support change over time as they move through phases of the illness and the family life cycle (Nuutila & Salantera, 2006). At the time of diagnosis, parents want clear and consistent infor- mation, and possibly a more directive approach from the provider. For example, when a child with Down syndrome is born, the parents may want to know the immediate implications for the child’s health and how that will affect their ability to care for the child at home. As the child grows older and the family gains experience in the care of the child, parents may want a less directive approach from the provider and more of a mutual exchange of information in a col- laborative partnership (Nuutila & Salantera, 2006). The nurse who encounters this family at a 3-year well-child examination, for example, should ac- knowledge the parents’ intimate understanding of the child, her reactions to the environment, and her unique needs during the clinical encounter. At this point, the most helpful advice from the nurse is likely anticipatory guidance and planning for entry into the school system. Nurses must recognize that individual and family needs will greatly differ for this child as she becomes 16, 28, or 46 years of age.

Adolescents With Chronic Illness Transition to Adult Services Transition of care issues have been discussed in the health care industry for decades, but little attention has been allotted to studying and resolving transi- tion problems. Transitions occur in health care in a variety of ways: when a patient moves from one health care provider to a different provider, when a person is sent home from the hospital, when a person who lives in a nursing home needs to be hospitalized, or when a person must switch from private pay to being on Medicaid. Basically a tran- sition is any time there is a major change in the

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health care management. Transition of care issues for adolescents, who are required to switch from pediatric health care providers to the adult providers of care, is a global health care problem (Kralik, Visentin, & van Loon, 2011; Lugasi, Achille, & Stevenson, 2011; Sonneveld, Strating, van Staa, & Neiboer, 2013; Steinbeck, Brodie, & Towns, 2007, 2008; Wong et al., 2010). Family nurses are in a prime position to address transition issues because they work closely with families and children who have chronic illness (Jalkut & Allen, 2009). As sur- vival rates have improved with many children who live with a chronic illness, this aspect of family nursing requires even more focus. The transition is not just about the medical care from a pediatric physician to an adult specialist. The transition also needs to include psychosocial, educational, and vo- cational needs of the young adult. It also needs to consider the parents who have, up until that point, orchestrated the management of the illness, communicated with the health care team, made ap- pointments, and interfaced with school. The tran- sition period causes anxiety for the whole family involving leaving long-term health care provider relationships, developmental psychosocial stressors of adolescences, uncertainty about health insur- ance coverage and issues of the Health Insurance Portability and Accountability Act (HIPAA) relative

to parental knowledge, and involvement in the care process and communication (Peter, Fork, Ginsburg, & Schwarz, 2009).

What compounds the difficulty of this transi- tion period for the family and the individual mem- bers is the fact that the adult health providers who are assuming care of the young adults with chronic illness often lack understanding of normal adolescent growth and development (Bowen, Henske, & Potter, 2010). This lack of understand- ing on the part of adult health care providers was recognized as a problem by the American Acad- emy of Pediatrics (2011).

Osterkamp, Costanzo, Ehrhardt, and Gormley (2013) developed an online educational program for nurses about the transition of care for adoles- cent patients with chronic illness. The modules in the program are HIPAA, family-centered care and its core concepts relative to transition of care of the adolescent patient, and healthy versus chronically ill adolescent development (including information about decrease in compliance with medical regimens and feelings of isolation by being different than other teens). Of the 1,898 nurses who completed the education modules, the post-test assessment score averages were 95%. Box 9-2 lists the Principles of Successful Transition to Adult-Oriented Health Services that have been

Families Living With Chronic Illness 257

BOX 9-2 Principles of Successful Transition to Adult-Oriented Health Services

1. Health care services for adolescents and young people need to be developmentally appropriate and inclusive of the young person’s family where appropriate.

2. Young people with chronic illnesses and conditions share the same health issues as their healthier peers. Health services therefore need to be holistic and address a range of concerns, such as growth and development, mental health, sexuality, nutrition, exercise, and health-risking behaviors, such as drug and alcohol use.

3. Health care services require flexibility to be able to deal with young people with a range of ages, conditions, and social circumstances. The actual process of transition needs to be tailored to each individual adolescent or young person.

4. Transition is generally optimized when there is a specific health care provider who takes responsibility for helping the adolescent or young person and his or her family through the process.

5. Active case management and follow-up helps optimize a smooth transfer to adult health services, as well as promote retention within adult services.

6. Engagement with a general practitioner can address holistic health care needs and help reduce the risk of failure of transfer to adult services.

7. Close communication between pediatric and adult services will help bridge cultural and structural difference of the two health systems, resulting in smoother transition of young people to adult services.

8. An ultimate goal of transition to adult health care services is to facilitate the development of successful self-management in young people with chronic conditions.

Source: Rosen, D., Blum, R., Britto, M., Sawyer, S., & Siegel, D. (2003). Transition to adult health care for adolescents and young adults with chronic conditions. Position paper of the Society for Adolescent Medicine. Journal of Adolescent Health, 33, 309–311.

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endorsed by the Society for Adolescent Medicine in 2003.

Nurses who work with families and their teenager with chronic illness should establish a process of “getting ready” for the transfer long before—at least a year or so in advance—the situation occurs (van Staa et al., 2011) and work with the family to design a well-thought-out purposeful plan of tran- sition. One difficult part of this care process is working with the family and the health care team to determine when is the best time for the transi- tion to occur. To base this transition decision solely on chronological age is not sufficient (van Staa et al., 2011). Typically, the transition occurs some- time between years 18 and 21 (American Academy of Pediatrics, 2011). The abilities of the young adult to demonstrate responsibility and to partici- pate as much as possible in self-care management (self-efficacy) are better predictors than age of readiness to transfer (American Academy of Pedi- atrics, 2011; van Staa et al., 2011). Other factors nurses need to consider and address beside self- efficacy and age in this transition plan are the ado- lescent’s attitude toward transition and the com- plexity of the illness and treatment plan. The transfer plan should also entail:

■ Introducing the concept of transition early in the care relationship with the family. Stress that the transfer is a normative process that reflects achievement of an additional devel- opmental task (Lugasi et al., 2011). Assure the family that transition is not a form of abandonment.

■ Holding family meetings to discuss expecta- tions regarding the move to adult care. Explore what they think will be the same or different. Discuss the timing of the transfer. Use these meetings to uncover concerns and needs of the family and each family member about the tran- sition process (Lugasi et al., 2011).

■ Assessing the adolescent’s ability to provide self-care (Lugasi et al., 2011).

■ Designing educational programs to meet the needs of the adolescent/young adult about the illness, how to self-monitor, how to self-manage illness and situations, and how to ask for help when needed. This should include helping the young adult to learn how to develop communication skills.

■ Holding discussions about the adult health care environment, insurance coverage, and

health policy changes that will affect the care once the adolescent becomes 18 years of age and is considered a legal adult. This discussion should include differences between pediatric and adult health models of care.

■ Having discussions about how the parents may need to move from acting as the primary decision makers to a more supportive and collaborative model of decision making with the young adult.

■ Providing the family with a list of adult health providers they may want to consider in their selection process.

■ Introducing independent visits with the pedi- atric health care provider without the parents present.

■ Arranging for an introductory visit with the adult provider so that the first interaction is not about an exacerbation of the chronic ill- ness, but one that is about health mainte- nance. If possible, plan for a joint visit of the family, the pediatric health care team, and the adult health care team.

■ Identifying a transition coordinator or some- one in the adult health care team who can serve in this role for the family and young adult (Lugasi et al., 2011).

Siblings of Children With Chronic Illness Younger siblings often strive to model the behav- iors of older siblings, including illness behaviors. Focus groups held with parents, siblings, and health care providers resulted in a comprehensive list of psychosocial concerns specific to the experience of school-age siblings of children with chronic illness (Strohm, 2001). These conversations iden- tified seven significant feelings of siblings of chil- dren with chronic health care conditions (Strohm, 2001, p. 49):

■ Feelings of guilt about having caused the illness or being spared the condition

■ Pressure to be the “good” child and protect parents from further distress

■ Feelings of resentment when their sibling with special needs receives more attention

■ Feelings of loss and isolation ■ Shame related to embarrassment about their

sibling’s appearance or behavior ■ Guilt about their own abilities and success

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■ Frustration with increased responsibilities and caregiving demands

Other studies reveal more positive sibling out- comes, pointing out that siblings develop im- proved empathy, flexibility, pride in learning about and caring for a chronic illness, and understanding of differential treatment from parents based on ability and health. Siblings are noted to be more caring, mature, supportive, responsible, and inde- pendent than their peer counterparts who do not have siblings with chronic conditions (Barlow & Ellard, 2006). Siblings are reported to have high levels of empathy, compassion, patience, and sen- sitivity (Bellin & Kovacs, 2006). Siblings demon- strate learning about the disease and in being supportive of their ill brother or sister, and some- times assume parental roles (Wennick & Hallstrom, 2007). Children who learn about their chronically ill sibling’s illness and its mechanisms tend to feel more confident and competent in their ability to support their sibling (Lobato & Kao, 2005; Wennick & Hallstrom, 2007).

Families face the challenge of balancing the needs of the child with a chronic condition with those of the surrounding family, including siblings. It has long been demonstrated that parents of sib- lings of children with disabilities often lack the abil- ity to give needed time and attention to siblings because of the demands of caring for the child with a disability; this sometimes results in siblings re- senting the child with disabilities (Rabiee, Sloper, & Beresford, 2005). Some parents rely on siblings to entertain or assist in the care of the child with disabilities, an action that puts additional stress on the other children.

Systems of Care for Children With Chronic Conditions Often, bureaucracy and conditions in the health, education, and social services systems are sources of frustration for caregiving families. For example, many services are provided based on diagnosis or categorical determination of eligibility. There- fore, children need to fit certain categories to be eligible for services in acute care, community care, social services, or the school system. Because clinics and subspecialists are in place to serve certain pop- ulations, children with uncommon diagnoses or multiple complex chronic conditions are at a dis- advantage, and families must seek scarce resources

and are forced to coordinate care from multiple spe- cialists in multiple disciplines (Ray, 2003).

When a family member has a chronic illness, the family enters into a complex network of rela- tionships with health care providers and other professionals in the care system. Families often feel as if they are thrown into these relationships (Dickinson, Smythe, & Spence, 2006). Nurses who provide family-focused care consider impli- cations of dynamic care systems, refer the family to appropriate care centers, and evaluate the forms of care provided. Understanding the vul- nerability of families in health care provider re- lationships helps nurses frame their family interactions in ways that create more horizontal than hierarchical relationships. Families are truly the “experts” when it comes to the day-to-day needs of their family members with chronic con- ditions, and they want professionals to recognize and respect this expertise. Families want profes- sionals and community members to be informed about their family member’s diagnosis and the family implications. One parent described her frustration with staff poorly trained on sickle cell disease when she stated, “I knew we were in trouble when the nurse looked at me and said, ‘so . . . how long has your daughter had sickle cell disease?’ She did not even know that it was an inherited disease” (Mitchell et al., 2007). Through their multiple health care system encounters, care- givers of family members with chronic health conditions tend to develop skills that aid them in the navigation of complex systems as they advo- cate for their family member’s needs (Mack, Co, Goldmann, Weeks, & Cleary, 2007). It is frus- trating for caregivers when they encounter health care professionals who are insufficiently in- formed, who lack knowledge about their family member’s condition, or who negate or discount their expertise in providing care (Nuutila & Salantera, 2006).

Social Support Social support can be categorized into four types of supportive behaviors: emotional, instrumental, informational, and appraisal (House, 1981). The family’s capacity to mobilize social support to man- age crisis periods and chronic stressors related to a family member’s health condition contributes to the well-being of all family members (Bellin & Kovacs,

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2006). Table 9-5 provides examples of the four types of social support for families who have a member with a chronic health condition.

Community contexts, such as the neighbor- hood, school, or church, support the family’s de- velopment of positive values and foster strengths (Bellin & Kovacs, 2006). Social capital is a concept that can be useful in understanding the commu- nity context of health for those with chronic ill- ness and their families. Like social support, social capital is about resources that come from relation- ships with other people and institutions. Social capital includes features of social life, such as norms, networks, and trust, that enable people to act together toward shared objectives (Putnam, 1996). Looman (2006) defines social capital in terms of investments in relationships that facilitate the exchange of resources. For families who have a chronically ill family member, social capital is especially relevant.

When an individual has a chronic illness, the members of the family (particularly caregivers)

are required to engage with numerous profes- sionals and institutions in the process of manag- ing the condition and exchanging resources. The family benefits when a mutual investment exists in their relationships with nurses, physicians, teachers, other families, and neighbors. For ex- ample, a mother might invest in her relationship with her child’s teachers by providing them with information about her child’s health condition, or by helping the teacher understand the child’s unique learning style. The teacher, in return, might invest in a relationship with the child’s family by scheduling additional parent-teacher conference sessions or by learning more about the child’s specific health condition. The benefit of this investment in the family-school relation- ship, where the common goal is the success of the student, is an exchange of resources. The benefit of this investment may also reach other students and families if this pattern of communication becomes a norm in the school, and if the general level of trust among parents and teachers increases.

260 Families Across the Health Continuum

Table 9-5 Helpful Support for Families With a Chronically Ill Member

Type of Support Definition Activities Example From Case Studies

Emotional support

Instrumental support

Informational support

Appraisal support

Provision of love, caring, sympathy, and other positive feelings

Tangible items, such as financial assistance, goods, or services

Helpful advice, informa- tion, and suggestions

Feedback given to indi- viduals to assist them in self-evaluation or in appraising a situation

Listening

Offering commendations

Being present

Assisting with household chores (e.g., laundry)

Providing respite care

Providing transportation

Assisting with physical care

Sharing resources (e.g., books, Web sites, provider names)

Educating family members on the health needs of the ill family member

Informational support groups

Reviewing daily logs

Sharing written feedback from providers (e.g., laboratory results)

The nurse working with the Yates family commends them by saying, “I am impressed by the commitment that your family has made to making life as ‘normal’ as possible for Chloe and her siblings.”

Devon’s parents offer to take Chloe’s siblings for a weekend, providing respite for the family and giving the siblings an opportunity to share time with their grandparents.

Sarah’s brother David, who also has type 2 diabetes, recom- mends a Web site that provides healthy recipes for individuals with diabetes.

The nutritionist provides ap- praisal support to Sarah during her regular appointments, offer- ing feedback on how Sarah is doing with her lifestyle and dietary changes.

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In this way, social capital facilitates the family’s ability to acquire emotional, instrumental, infor- mational, and appraisal support in many contexts.

FAMILY NURSING INTERVENTION DURING CHRONIC ILLNESS

The role of the family nurse is to assist multiple family members to interact in ways that optimize abilities and strengths. Although chronic illness care requires consideration of individual out- comes, it must be addressed within the family environment, with consideration of long-term caregiver needs and family outcomes. Across the life course, families use management styles, func- tional processes, and family health routines to address actual problems, minimize risks, and max- imize potentials. Nurses who assess for these styles, processes, and routines, and who then tailor their interventions accordingly to empower and collaborate with families, will be most effective in meeting chronic care needs. Nurses assist families by discussing things such as family strengths, cou- ple time, balancing illness and family needs, de- velopmental milestones, sibling needs, economic restraints, and caregiver well-being (Kieckhefer, Trahms, Churchill, Kratz, Uding, & Villareale, 2013). Moreover, family-focused nursing care should address prevention or reduction of addi- tional health risks, maintenance of optimal wellness levels for all family members, development of therapeutic care management routines, goal- setting that enhances individual and family well- being and integrity, and accommodating un- planned changes. The FHM (Denham, 2003) suggests that families have core processes (i.e., care- giving, cathexis, celebration, change, communica- tion, connectedness, coordination) or ways families interact with one another. Nurses can use these ideas as guides to working effectively with families who have a member with a chronic illness (see Table 9-3).

In chronic disease management, family- focused care needs that equip these individuals and their families with knowledge and tools to be effective self-managers have long been lacking (Wagner et al., 2001). Use of an empowerment model and integrative processes to respond to unique needs has been most successful (Hummel, 2013b; Tang, Funnell, & Anderson, 2006). An

empowerment model involves the following types of care:

■ Patient-centered care ■ Problem-based care ■ Strengths-based care ■ Evidence-based care ■ Culturally relevant care

Moreover, empowerment acknowledges that the person is central to chronic care self-management. As nurses seek to empower families for chronic illness management, they should encourage flexi- bility, coordinate actions of multiple caregivers, use evidence-based guidelines, help families identify community resources, and provide education that builds confidence and skills in multiple family members. A need exists for more evidence about empowerment interventions (Henshaw, 2006; Hummel, 2013b).

Family nurses will be well served by keeping in mind that families typically vary in four systematic ways in their abilities to incorporate medical regi- mens into their daily routines: remediation, redef- inition, realignment, and reeducation (Fiese & Everhart, 2006). Remediation refers to a need to make slight alterations in daily routines to fit illness care into preexisting routines. Redefinition refers to a strategy whereby the emotional connections made during routine gatherings need to be rede- fined. Realignment occurs when individuals within the family disagree about the importance of differ- ent medical routines, and routines need to be realigned in the service of the child’s health. The fourth form, reeducation, arises when the family has little history or experience with routines and family life is substantially disorganized (Fiese & Everhart, 2006).

Research about family health suggests that structural behaviors or family health routines are visible activities that family members can readily recall and discuss from multiple perspectives (Denham, 1997, 1999a, 1999b, 1999c). Although family members may report similarities in rou- tines, unique variations are common. The nested family context is a powerful, persuasive, and mo- tivating determinant that influences ways health information is shared within a family and then in- corporated into daily routines. Routines have unique characteristics, they vary in rigidity and timing, and members have different expectations across families due to response to member beliefs,

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values, and perceived needs. Information that fits with perceived family needs is probably the most likely to be incorporated into daily actions. Thus, nursing assessment of chronic care management extends beyond the disease and should also in- clude ways members interact and the life patterns already established.

Family health routines include a number of cat- egorically different foci. Self-care routines involve habits linked with usual activities of daily living such as hygiene. Safety and prevention routines are primarily concerned with health protection, disease prevention, prevention of unintended in- jury, and avoidance. A nurse assessing this routine area might also be interested in discerning less healthy habits and considering the impact of high- risk behaviors, such as smoking, alcohol, and mis- use of other substances, on a chronic condition. Mental health routines are related to self-esteem, personal integrity, work and play, shared positive experiences, stress, self-efficacy, individuation, and family identity. Family-care routines are re- lated to valued traditions, rituals, celebrations, va- cations, and other events tied to making meaning and sharing enjoyable times. Illness-care routines are related to decisions about disease, illness, and chronic health care needs, and often determine when, where, and how members seek health care services and incorporate medical directives and health information into self-care routines. Family caregiving routines pertain to reciprocal member interactions believed to assist with health and ill- ness care needs and support during times of crisis, loss, and death.

Families use routines to arrange ordinary life and cope with health or illness events (Fiese & Wamboldt, 2000). These routines are embedded in the cultural and ecological context of families, and highlight ways to focus on family processes and individual and family dynamics (Fiese et al., 2002). Nurses aiming to provide education and counseling to individuals with a chronic illness need to understand the unique family routines of multiple household members and the ways chronic care management is going to alter patterns that are revered, cherished, and comfortable. Nurses who collaborate with families during assessment, goal setting, and outcome evaluation increase the like- lihood of providing effective nursing actions that get results that are sustainable over time.

CASE STUDIES: FAMILIES LIVING WITH CHRONIC ILLNESS

It is important to recognize that all chronic diseases are not the same. When diagnosis differs, individ- ual and family needs can differ as well. Other fac- tors also enter into the picture. For example, the age, gender, education, culture, and race of the in- dividual diagnosed, as well as availability of family members, can be critical factors in ways diseases are managed in family situations. This section explores the ways the Yates and Current families address chronic illness management. The Yates family has a daughter who has been diagnosed with type 1 diabetes and the family has been living with this sit- uation for a while. The second family, the Cur- rents, provides an example of working with a family who has an adult member living with Parkinson’s disease. Although these two chronic diseases share some similar characteristics for the families living with chronic illness, some unique qualities also emerge. The ways and timing of diagnosis can differ. Treatments can be different. Living with the disease over several decades could mean that new treatments become available. Families living with these two conditions often face different chal- lenges as a result of individual motivation and knowledge, family member characteristics, family developmental stage, and demographics. Family- focused nurses recognize that multiple factors enter into understanding why individuals successfully manage their disease and reasons why they are at risk for complications.

262 Families Across the Health Continuum

Case Study: Yates Family Chloe Yates, age 13, was recently admitted to the pediatric intensive care unit with ketoacidosis, a complication of type 1 diabetes. She passed out at school after vomiting and complaining of fatigue and was transported to the hospital via ambulance. On her hospital admission, her serum glu- cose level was 350 mg/dL. Her glycosylated hemoglobin (Hba1c) was 11%, indicating poor metabolic control over the past 3 months. Chloe has been in the hospital for 2 days and is getting ready to be discharged home today.

Chloe’s parents, Devon and Bonita Yates, were sur- prised when they found out how poorly Chloe’s metabolic

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Families Living With Chronic Illness 263

control had been before her admission. See Figure 9-2 for a detailed Yates family genogram. They believed that their family had open communication and that they knew what was happening with their children. Chloe told her parents that her glucose levels were “fine.” Chloe is an honor-roll student at school, active in basketball and soccer, and well liked by her peers. Devon, an African American man, is college educated and works for a thriving law firm. Bonita, a college-educated woman with Hispanic roots, is em- ployed as a business manager in a large firm.

The Yates family recently experienced several stressors besides this new hospitalization. Bonita’s father, Henry, passed away 2 months ago after a long bout with Alzheimer’s disease, and the family recently moved into a new and larger home in a racially diverse urban neighbor- hood. The children are enrolled in a private school, so the move did not affect their school relationships. Chloe and her younger siblings, Leslie and Trevor, appear to have adjusted to the new living location and seem content with their new neighborhood friends. Chloe has continued to receive primary care services in the clinic where the long- term pediatric nurse practitioner has come to know the family quite well.

Chloe was diagnosed with diabetes 2 years ago and was 11 years old at the time. When diagnosed, she spent several days in the hospital. Bonita accompanied her to a

series of diabetes education classes, and they shared what they learned with the rest of the family. Chloe easily as- sumed responsibility for monitoring her glucose levels and administering her insulin when she was diagnosed. At first, the family struggled to make needed changes to their family health routines based on Chloe’s medical needs— changes in Chloe’s dietary needs, daily regulation of her insulin, bouts with hypoglycemia, and frequent monitoring of blood glucose levels that required significant manage- ment. The family has tried to adopt dietary patterns that support Chloe’s needs. Bonita learned some new things about counting carbohydrates, avoiding processed foods with high fructose, and preparing foods in nutritious ways. For example, Bonita avoids buying chips and now shops for more nutritious snack items that will not elevate Chloe’s blood glucose level. The family incorporated the manage- ment of her diabetes into the family routines, and it seems less foreign to them now. Leslie and Trevor were unhappy with the dietary changes at first, but they have made a positive adjustment over time. The family makes a point of eating at least one meal together daily, which allows each family member to talk about their day. The family recently started “highlight/lowlight” time at dinner, during which each family member shares one high point and one low point about his or her day. Chloe’s highlights focused on

Chloe 13 yr

Leslie 11 yr

Trevor 4 yr

In hospital ICU with DK 17

Henry Died 2 months ago Died 5 years ago

BonitaDevon

FIGURE 9-2 Yates family genogram.

(continued)

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264 Families Across the Health Continuum

her new friend at school, Brian. Her lowlights have focused on the “hassle” of checking her glucose and having to eat differently than her friends, something she is finding embarrassing.

Leslie and Trevor are staying with Devon’s parents while Bonita and Devon prepare to take Chloe home from the hospital today. Leslie and Trevor have been asking about Chloe for several days, as they are worried about her “sugar.” Leslie, age 11, has been especially concerned about Chloe. She and Chloe have been arguing lately and Leslie feels it might be her fault that Chloe became ill. Trevor, age 4, has been asking if he can use Chloe’s “finger pokers” and say- ing, “I have diabetes too!“ Devon and Bonita share with the nurse their beliefs that he wants some of the special attention that his sister is getting at the hospital. These par- ents are worried about being “spread too thin” as they try to fulfill their employment responsibilities, attend for each child’s unique needs, and provide Chloe with the medical care she needs to manage the diabetes.

Chloe’s parents are meeting with the nurse today as they prepare for Chloe’s discharge home. When the nurse asks whether they thought Chloe fully understood how to manage her diabetes, Devon said, “She not only un- derstands, she could teach it! We just can’t figure out why she had such a setback recently.” This family is experiencing a transitional stress that is typical of adolescent behavior and also typical of adolescents living with a chronic illness.

Family Nurse’s Reflection on the Yates Family Using Evidence-Based Practice: In poor-functioning families of children with type 1 dia- betes, metabolic control is also likely to be poor, and this seems to be particularly true for youths older than 12 years (Fiese & Everhart, 2006). In studies of families managing childhood diabetes, reports of a parent and child working together as a team around daily manage- ment tasks were associated with better adherence (Fiese & Everhart, 2006). Mothers in families with children who have type 1 diabetes reported having less time to engage in activities with their children compared with mothers who do not have a child with diabetes (McClellan & Cohen, 2007). Parents of children with type 1 diabetes are more likely to describe their families as less achievement oriented than families without children who have diabetes (McClellan & Cohen, 2007).

Although nurses should be aware of the potential for family conflict around diabetes management, they should not assume that poor medical adherence is a product of the conflict observed, because conflict and poor medical adherence are developmentally normal processes in families

with adolescents (Dashiff, Bartolucci, Wallander, & Abdullatif, 2005). It is important to keep in mind that conflict occurs in all families, regardless of the age of individual family mem- bers. What is vital is the way conflict is handled and resolved. Nurses can assist families by suggesting effective communi- cation techniques and developmentally appropriate strate- gies to address problems and areas of conflict linked with healthy functioning and development. Studies of psychoso- cial well-being in families of children with chronic conditions too often focus on psychopathology and lack of adjustment, with less attention given to well-functioning and positive growth after childhood illness (Barlow & Ellard, 2006). More recent research on sibling relationships measures the posi- tive attributes that occur in families with a child with a disability, instead of only pathologizing this experience (Barlow & Ellard, 2006; Bellin & Kovacs, 2006; Lobato & Kao, 2005; Wennick & Hallstrom, 2007).

Little is known about the best ways to educate care- givers about ways to manage this disease in the family household and little to no consideration is given to individ- uals’ social background (Glasdam et al., 2012). Findings from a recent study that considered family support and adherence to medical regimen identified that persons with diabetes felt sabotaged by family members when mem- bers knew what was needed to manage the disease, but were unmotivated to provide support needed to make changes or offered temptations to indulge in contradictory activities (Mayberry & Osborn, 2012). These researchers concluded that there is a need for nursing actions that enhance family members’ motivation and assist them to choose behavioral skills that empower their family member diagnosed with diabetes.

In families with adult members who have diabetes, family health routines are instrumental in self-management (Collier, 2007; Denham, Manoogian, & Schuster, 2007). A diabetes diagnosis affects previously constructed health routines; these old behaviors often need to be decon- structed and new ones formed in accord with unique family needs (Denham & Manoogian, unpublished). In diabetes self-management, differences in family members (e.g., gender, age, motivation, relationship) have implica- tions for member support or threats to dietary and other care routines (Schuster, 2005).

As a nurse working with persons with various types of diabetes, it is important to note that a one-size-fits-all solu- tion is not appropriate. Nursing assessments must consider the various ways conditions might affect individual mem- bers and the family as a whole. Chronic diseases may have similar diagnostic factors involved and symptoms might be similar, but the human and family response of different

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households can be extremely different. Therefore, developing plans of care, nursing actions, and ideas about family em- powerment must be based on the unique circumstances experienced by each family.

The Yates family case study illustrates the multiple factors that face families who have a child with a chronic illness. The Yates family has three children, ages 13, 11, and 4. Chloe, the oldest child, has had diabetes for 2 years and has done well with parental guidance and self-management until recently. As a young teen, Chloe is moving into a new developmental stage. Chloe’s disease management is threat- ened by things outside the family household, such as peer pressure and larger periods outside of the home environ- ment with friends that involve food choices.

In the Yates family case study, Leslie’s and Trevor’s reactions are typical for siblings of children with chronic conditions. Leslie, for example, feels responsible for Chloe’s hospitalization, and has expressed possible guilt linked with recent arguments. Trevor’s desire to have diabetes like his sister may represent his recognition that Chloe’s diabetes is the source of much attention from their parents, attention that may be drawn away from him.

Chloe’s parents have rearranged their lives to incorpo- rate the management of her diabetes, but they also face the continued needs of their other children. These parents need to recognize the ways Leslie’s and Trevor’s develop- mental needs influence their actions and consider possible ways the psychosocial development of children at different ages will be attended to in the future (Bellin & Kovacs, 2006). The experience may catalyze these siblings’ abilities to tap into inner resources and develop empathy, compas- sion, patience, and sensitivity. Leslie and Trevor will benefit from age-appropriate, accurate information about Chloe’s diabetes and from knowing that their responses are normal.

The Yates family demonstrates several examples of a cohesive family unit. For example, the family members value time together at meals and encourage shared feel- ings. Several studies have shown that high family cohesion is associated with adherence in children and teens with treatments for type 1 diabetes (Cohen, Lumley, Naar-King, Partridge, & Cakan, 2004; Leonard, Jang, Savik, & Plumbo, 2005). Cohesiveness allows for shared understanding, respect for differences of opinions, and an emotional investment in keeping the family together (Fiese & Everhart, 2006). The Family Management Style Framework could be useful for nurses in considering the Yates family (Knafl & Deatrick, 1990, 2003; Knafl et al., 2012). Chloe’s parents attempt to focus on the normal aspects of Chloe’s early adolescence, and they see her as normal in many ways. For this reason, the Yates family might be viewed as

accommodating. They have, up to this point, felt confident about Chloe’s ability to manage her diabetes independ- ently, but perhaps Chloe’s transition into adolescence will require the family to reassess their assumptions. The Yates family has the resources and cohesiveness to negotiate the developmental changes that occur along the way.

Chloe’s parents were surprised to learn that her meta- bolic control is poor, as she had previously managed re- sponsibilities linked with diabetes self-management with ease and skill. An early adolescent who has successfully managed diabetes may find it difficult to continue to manage the condition while simultaneously negotiating a move to social independence. Chloe’s desire to fit in with her peers may be at odds with her need to check her blood glucose levels before meals, especially at school, and with her dietary limitations. Chloe’s communication with her parents is particularly important at this transitional time. Parents are challenged to provide the adolescent with a level of autonomy that is developmentally appropriate while simultaneously monitoring abilities to adhere to complex medical regimens. Studies have shown that the more teens (particularly girls) perceive their mothers as controlling, the greater the negative effect on adherence (Fiese & Everhart, 2006).

It is possible that providers and parents may overesti- mate adolescents’ desire for autonomy and confidentiality, especially when illness-related (Britto et al., 2007). Adoles- cents, who tend to be more peer oriented, may wish to reduce the power differential between themselves and their health care providers. They might prefer that providers use direct communication styles. Adolescents with chronic illnesses may actually have fewer expectations for confi- dentiality and greater needs for parental involvement in care than healthy peers (Britto et al., 2007). Thus, nurses should not assume that all teens are seeking independ- ence and autonomy just because they have reached the adolescent stage. In fact, nurses should consider the uniqueness of individual and family situations before giving advice and avoid passing judgment.

The family nurse should work with Chloe’s parents’ mo- bilized resources to help them meet the needs of all their family members. See the Yates family ecomap in Figure 9-3. The grandparents provided care for their two younger chil- dren while the parents prepared to take Chloe home from the hospital. In addition, the nurse could facilitate a parents and Chloe meeting with the school nurse and teachers. By helping families to assess their resources and determine what they still need the whole family will enjoy improved health outcomes.

(continued)

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266 Families Across the Health Continuum

FIGURE 9-3 Yates family ecomap.

D/C nurse

PNP

New school

School sports

Boyfriend Brian

School friends

Devon’s parents

New house

New neighborhood

ICU doctors

Strong relationship

Weak relationship

Tense relationship

Direction of energy flow

Current Family Case Study Ben Current is a 68-year-old widow, diagnosed with Parkinson’s disease at the age of 58. He owns and farms his 500-acre family ranch in eastern Oregon on which he raises cattle and hay. This case study is presented through the lens of Rolland’s Chronic Illness Framework.

Illness Onset: Parkinson’s disease (PD) is a slowly progressive neurode- generative brain disorder with motor symptoms of slow- ness, rigidity, and tremor. There are also a host of nonmotor symptoms that include autonomic, neuropsychiatric (e.g., dementia and depression), and sleep complaints. The cause of PD is not known and treatment is aimed at mini- mizing disability and maintaining optimal quality of life. At this most recent visit to the Movement Disorder Clinic, Ben

presents with a number of motor and nonmotor concerns. In addition, he has low adherence to treatment recommen- dations and his family is expressing strain from the growing burden of care.

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Families Living With Chronic Illness 267

Course of Illness: When individual family members have a progressive chronic illness, such as Ben with PD, the increasing disability requires families to make continual changes in their roles as they adapt to the losses and needs of the family member. Ben’s family is at the Movement Disorder Clinic today to seek help with Ben’s increasing symptoms. Several family members express feeling of stress and are exhausted with the routine and ongoing demands of his progressive symptoms.

There are two assessment tools used to evaluate the progressive aspects of PD. The first is the Hoehn and Yahr scale. This instrument identifies five stages based on motor symptoms: Stage 1 is unilateral motor involvement; Stage 2 is bilateral movement involvement; Stage 3 is mild to moderate disease with impaired balance; Stage 4 is severe disease with marked disability; and Stage 5 is confinement to bed or a wheelchair. It is important for family nurses to know that any reference to staging of PD is a quick look at the condition at that point in time during that visit and is not meant to suggest a timeframe of progression. It is also worth noting that it only evaluates motor symptoms and it is important to realize that nonmotor symptoms, such as depression, can cause as much (or more) disability as the motor symptoms. The second instrument, the Unified Parkinson’s Disease Rating Scale (UPDRS), is a detailed instrument that assists family nurses to assess the daily needs of the ill family member and the family caregiver in six areas of function: functional status, level of activities of daily living, motor function, mood, cognition, and treatment- related manifestations.

Outcome—Trajectory of Illness and Incapacitation: Typically, people with PD can live 20 years or more from the time of diagnosis. Death is usually secondary to symptoms of immobility. It is the 14th leading cause of death in the United States. There is currently no cure for PD. The stages of the illness, as discussed above, are progressive in nature. Ben has been in Stage 3 of the disease and symptoms suggest he is progressing to Stage 4. The focus of this visit is to minimize disability through symptom management and to help the family find resources in its local community to support Ben and minimize caregiver strain. If these interventions improve his compliance with medication, the family may maintain Ben in his current Stage 3.

Time Phase: Brief Review of Ben’s Initial Diagnosis: At initial diagnosis, Ben, 58 years old, was, in his words, “just not doing well.” He was worried about a tremor in his left hand, but at that point it did not interfere much

with his daily work or activities. Sarah, his wife, had taken over writing the paychecks for their three ranch hands and all of the bills because Ben’s handwriting had started to deteriorate. He noticed that he was slowing down, but attributed his increasing stiffness of legs and arms to “getting old” and his demanding physical lifestyle. What brought him in to see his health care provider was dizzi- ness and falls. Sarah was worried that he would get dizzy while operating the farm machines. When he came home with a cut lip, swollen ankle, and scraped-up shoulder, Sarah demanded he see the family nurse prac- titioner (FNP), who is located 50 miles from his ranch. The FNP suspected Ben had PD, but sent him to the Movement Disorder Clinic and specialists in Portland, Oregon, which is 330 miles from where Ben lives. Since then, Ben has been managed primarily by his FNP with consultation and supportive assistance from the special- ists, who see Ben every 6 months. Due to weather and other family events, however, Ben and his family have not been to the clinic for a year.

Mid–Time Phase and Family Functioning: Ben and his family have been living and adapting to his progressive PD for 10 years. See Figure 9-4, which shows the Current family genogram. Early on, the adaptation was relatively smooth as Ben responded well to medication intervention and his wife Sarah was the major support person. The family experienced a major change in the family involvement and management of Ben’s illness when Sarah died 2 years ago from a heart attack at age 66. Since that time, 27-year-old Logan, Ben’s grandson, has been living at the ranch and helping to provide support and care for Ben.

Julie, the NP specialist in the Movement Disorder Clinic, consulted the detailed family genogram in the chart. She noted that the family genogram had not been updated since Sarah’s death; therefore, she updated it. At this visit, the family members who are present include Ben, his daughter Kathleen, his daughter Carole, and his grandson Logan, who is the primary caregiver. Logan ex- presses feeling overwhelmed with his caregiver role and work-time conflict. He feels like Ben needs more assis- tance. As both Kathleen and Carole are worried about Ben’s safety while Logan is working on the ranch during the day, they report alternating days they come to spend with Ben. In order to facilitate uncovering the family stres- sors as well as the current medical condition of Ben, Julie decided to write issues in a table format that may then easily be used as a decision-making grid for the family. Julie completes her physical assessment of Ben’s motor abilities, which are incorporated into the table. Ben fills

(continued)

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268 Families Across the Health Continuum

FIGURE 9-4 Current family genogram.

Ben 68 yr

Ross 56 yr

Logan 32 yr

James 25 yr

Kathleen 40 yr

Ashley 25 yr

Glen 45 yr

Tyler 20 yr

Carole 45 yr

2011

Married 1963

Grace

Sonja 25 yr

Matt 29 yr

Jenny 27 yr

Jarad 3 yr

Brad 5 yr

Sarah 68 yr

out a geriatric depression assessment instrument. Logan completes a caregiver strain assessment instrument.

Salient family issues in this phase for the Current family as it struggles to find a balanced family life and normalcy in functioning include the following:

1. Pacing and avoiding burnout: Logan is overwhelmed with being the primary caregiver for Ben. When Ben was more independent and the PD medications worked well at relieving Ben’s motor problems, Logan primarily had to focus on cooking and being sure that Ben took his medications. With advancing executive function (short-term) memory issues, the increased number of falls, and concerns about his grandfather’s safety, Logan feels that he cannot manage his own

work on the ranch and taking care of Ben. In the last month, Kathleen and Carole have been alternating days at the ranch to provide care for Ben during the day while Logan is working.

2. Reorganization of family roles: Logan, Kathleen, and Carole are all experiencing role overload as they all spend considerable time as the caregiver. Logan has expressed that he cannot continue to provide care for Ben in the home in the same way that he has in the past. The whole Current family is committed to keeping Ben at home as long as possible. Ben is clear that he does not want to leave the ranch. Tyler, 20-year-old grandson and Logan’s cousin, stated that he would move into the ranch to help as he works

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Families Living With Chronic Illness 269

there and this would save him time commuting to and from work. Logan would like Tyler to live at the ranch, but insists that caring for Ben requires more than the two of them could provide.

3. Sustaining autonomy for all members of the family: Ben is struggling with the advances in his PD that he sees in himself; therefore, he continues to drive and tries to do some work on the ranch knowing that he is not safe. Logan is stressed to the maximum with role strain overload in the caregiver role.

4. Successfully grieve the loss incurred from the disabil- ity or chronic condition: All the family members pres- ent shared concerns about the “declining” status of Ben’s health. The Current family is a close-knit family who are actively involved in Ben’s life and care. Ben has held a strong patriarchal role for the family. Each family member is grieving the loss of Ben in this role and having to adjust to changes that are brought about by the progressive nature of PD.

The family discussed several options for seeking additional help and other interventions during the family meeting:

1. The family discussed having Ben move to an assisted- living facility that is about 30 miles from the ranch. Ben vetoed this option of care at this time. He insists that he will stay on the ranch as long as possible.

2. The second option was to hire a full-time caregiver who would either live at the ranch or in the town. This approach would mean that Logan would provide nighttime care for Ben. The cost of this avenue was considered too much at this time. All family members agreed that they would like to save financial resources for when Ben may need nursing home placement.

3. The third option considered by the family was to ask Ben’s sister Grace if she would like to come live on the ranch where she grew up, and to help provide care for Ben. Grace, who was recently widowed and has no children, has a solid relationship with Ben. This option would relieve Logan, Kathleen, and Carole of many of the immediate daily caregiver responsibili- ties. Tyler could also move to the ranch and assume some of the caregiving tasks or home maintenance in

the evenings along with Logan. Carole mentioned that she had briefly brought up this idea with Grace. The family decided to have Aunt Grace come out for a trial run and determined that they would explore having a home health aide come to the ranch a couple of days a week to help with Ben’s hygiene. The family also agreed that they would explore having a shower with a chair installed. The family genogram was updated to include Grace and to show Grace, Ben, Logan, and Tyler all living in the same household.

4. After a visit to the physical therapist during their time at the Movement Disorder Clinic in Portland, Logan was excited about the possibility of all the grandsons working together to build a flat walking trail not far from the ranch house for Ben that would incorporate many of the physical therapy exercise strategies that may help strengthen his muscles, improve agility, and help decrease the freezing episodes. They would put several logs at varying heights for him to practice high stepping. They could increase his stride by placing stepping stones across the creek. They would make the trail so that it had several direction changes and have Ben walk between two trees that were shoulder width. Logan agreed that he would spearhead this venture with all the cousins.

5. Julie worked with Logan and Ben on medication reconciliation. Together they designed a medication administration chart to help the family caregiver and Ben improve medication adherence. See the table below.

6. Julie made referrals to speech therapy to assist Ben with his soft voice (hypophonia). Kathleen agreed to accompany Ben to this part of the visit in an attempt alleviate Logan of some caregiving responsibilities.

7. Julie sent a written summary of the visit to the FNP, who is Ben’s primary care provider. The summary included a suggestion to address Ben’s sleep problems and repeat the study at the sleep clinic, perhaps fitting him with a different continuous positive airway pressure (CPAP) mask, as many more are available now.

8. Ben agreed to stop driving and surrender his license only if he could still drive on the ranch.

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270 Families Across the Health Continuum

Score of 2: moderate mem- ory loss with disorientation and moderate difficulty han- dling complex problems: needs prompting for some activities of daily living.

Score of 0: no problems.

Score of 2: sustained depres- sion (1 week or more). When asked, Ben reports feeling sad and depressed. He has made several state- ments of low self-esteem and how he is useless on the ranch anymore.

Score of 1: less assertive than usual; more passive. See above. Ben does report feelings of anxiety at times.

Score of 2: when “on” and “off” or at end of dosing pe- riod as Ben has hypophonia due to his PD.

Score of 1: slight but definite excess of saliva in mouth; has nighttime drooling.

Score of 3: severely affected; not all words are legible.

Score of 2: can cut most food, although clumsy and slow; some help needed; this is be- coming more of an issue and before Ben didn’t need any assistance from Logan.

Score of 2: occasional assis- tance with buttoning, getting arms in sleeves.

Ben wants to continue to drive during the day to do some errands, especially as Logan works during the day on the ranch. Ben is not driv- ing safely especially with skills such as pulling out on the highway or turning left when traffic is present. In addition, Ben got lost on the ranch last week while trying to check on an area of fencing.

Family asks if Ben should be started back on an antide- pressant medication. He was taking one right after Sarah, his wife, died 2 years ago, but he stopped quite a while ago.

Logan reports that Ben repeatedly asks about the same aspect of work on the ranch; such as completing the corral repair.

Family reports that Ben is hard to hear and they feel as though they are always asking him to repeat what he says.

Ben says this is annoying but not a problem.

Kathleen has assumed book- work for the ranch.

Logan and Ben eat breakfast and dinner together. Logan helps Ben when this is an issue. Logan has been doing all of the cooking.

Logan helps Ben in the morning and at night with changing clothes. Ben strug- gles some at home in getting pants zipped and buttoned after toileting.

Discuss Ben surrendering his license. Allow him to continue to drive during daylight on the ranch as long as someone is with him.

Start on an SSRI medica- tion. The prescription has been faxed to the local pharmacy in Joseph, OR, and will be there for the family to pick up when they get home.

Need to build this into medication daily schedule.

Consider adding an anxiety medication but will hold off for now. Discuss next visit or during phone call with local FNP.

Referral to speech therapist while here during this visit to review with family some simple vocal exercises that will help Ben speak louder.

Suggest Ben chew gum or suck on hard candy if this bothers him as it will stimu- late swallowing.

No further interventions at this time.

Kathleen and Carole agreed to both bring home cooked meals for Logan to heat up. Kathleen and Carole take turns food shopping.

Suggest overalls that don’t require buttons or pants with Velcro closures. Use slip-on shoes. Due to bal- ance concerns, suggest Ben sit down when dressing.

Presentation of Ben’s mid-phase Parkinson Disease symptoms using some of the Unified Parkinson’s Disease Rating Scale as format

Ben’s Presentation and Score Family Concerns/Problems Suggested Actions Mentation, behavior and mood

IQ impairment

Thought disorder

Depression

Motivation-initiative

Activities of daily living

Speech

Salivation

Handwriting

Cutting food and handling utensils

Dressing

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Families Living With Chronic Illness 271

Score of 2: needs help to shower or is very slow in hygienic care.

Score of 2: can turn alone or adjust sheets, but with great difficulty.

Score is between a 2 and 3: Ben falls often but not daily. Sometimes he has fallen more than once in a day. Ben reports being dizzy when he stands (orthostatic hypotension).

Score of 3: Ben frequently freezes and occasionally falls from freezing.

Score of 2: moderate diffi- culty. Ben refused to use a cane, but grandson Tyler made Ben a walking stick which he now uses. Ben has bradykinesia with a weak push off, reduced leg lift, small stride length, lack of right arm swing and a narrow stance.

Score of 2: with complaints of numbness, tingling and fre- quent cramp and constant ache in calves and lower back.

This is new development. Logan is embarrassed by hav- ing to help his grandfather shower. In addition this adds increased caretaking time to Logan’s day.

Logan was concerned as he didn’t even think about this aspect of help his grandfather might need.

All family members are very concerned about Ben falling and the difficulty he has get- ting up from the fall. Ben walks on a regular basis. He has not kept up with his physical therapy in the last year. Ben seems to be stiffer and has more abnormal movements even on his medications.

See above. Explore more to see when Ben is freezing, such as, during a turn, going through doorways, at the start of walking, or when he is doing something that re- quires him to take a step back.

See above. After much dis- cussion Ben admitted that had trouble following his medication regimen during the day when Logan was at work. He also noted that he had been taking more Sinemet when he wanted to go out.

Discuss safety adapta- tions in the shower, i.e. chair, grab bars. Discuss not bathing every day. Refer to Occupational Therapy to see if there are assistive devices for brushing teeth.

He will use silk PJ bot- toms to decrease the fric- tion of turning. Explore if a bed rail can be placed on the bed. Discuss the weight of the covers or blankets used at night.

Family will increase fluids and get some support stockings to keep blood from pooling in his ex- tremities. Have Kathleen and Carole complete a fall safety check in the home environment to help identify. Check to be sure Ben has cell phone on him or a cordless phone is within reach so he can call if he falls when alone.

Review strategies with Ben to help him get going when he freezes while walking.

See above. Referral to PT for assistance in walking.

Starting Ben on SSRI for depression may help decrease pain sensations. Stretching and heat may relieve pain in calves.

(continued)

Presentation of Ben’s mid-phase Parkinson Disease symptoms using some of the Unified Parkinson’s Disease Rating Scale as format—cont’d

Hygiene

Turning in bed and adjusting bed clothes

Falling

Freezing when walking

Walking

Pain

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Ben reports that he has in- somnia. He has difficulty stay- ing asleep. Before diagnosed with PD, Ben was assessed for sleep apnea in a sleep clinic. He reports that he dislikes the CPAP machine and the mask on his face, so he doesn’t use it. He thinks he sleeps about 4 hours a night. He has day- time sleepiness.

Ben reports that has been having periods of excessive sweating . . . almost like he was caught in a rain storm.

Ben has a long history of constipation, even before diagnosis.

Ben reports nocturia, which might contribute to his insomnia.

Logan hears Ben up at all hours of the night, which interferes with his sleep. Ben has fallen at night too, which adds to Logan’s vigilance of getting up to check on Ben.

Note that Ben was given a diuretic for hypertension. Explore time of day he is taking this medication.

Will discuss with FNP about having Ben reassessed for sleep at the sleep clinic in Pendleton, OR.

Have Ben keep a simple sleep log if possible.

Check on medications that Ben is taking and make sure that the timing is not affecting sleep.

Checking the timing of medications as these may be happening as the dos- ing is ending or the “off” periods.

As Ben is sweating excessively at times, consider he may be dehy- drated . . . set up a plan so he drinks about 1500 mLs of fluids a day. Continue daily dose of Miralax.

Be sure there is a night- light in the bathroom and rugs in the bathroom.

See the Current family ecomap in Figure 9-5.

Presentation of Ben’s mid-phase Parkinson Disease symptoms using some of the Unified Parkinson’s Disease Rating Scale as format—cont’d

Other complications

Sleep

Excessive sweating

Constipation

Urinary Problems

Pharmacy Physical therapist

Carole

Kathleen

Tyler

Ben

Logan Grace

Julie FNP

Speech pathologist

Sarah FNP

Strongly attached

Moderately attached

Slightly attached

FIGURE 9-5 Current family ecomap.

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SUMMARY

A family focus on care should not be considered optional when it comes to chronic illness. The long-term effects of chronic health conditions affect individuals and families differently than acute health events.

■ Although the needs families experience may be similar initially, the duration of the illness alters the ways care is managed and perceived over a long life course.

■ The severity, complexity, and longevity of care needs associated with chronic conditions can alter a desired or expected future into one that dramatically revolutionizes the lives of entire households.

■ Financial costs and family resources are often highly taxed by years of debt and stress that would not be expected if a chronic condition had not occurred. Some conditions may worsen over time or require endless amounts of attention that can become especially bur- densome as the chronically ill person ages and economic or family resources are exhausted.

■ Some children with SHCN and adults may require extraordinary adaptations by parents, siblings, and others that strain relationships.

■ Although the chronic illnesses of children may be primarily genetic or environmental in nature, many of the adult chronic conditions are linked with lifestyle behaviors.

■ Healthier lifestyles can reduce risks for some chronic conditions and can prevent or delay many complications from these diseases.

■ Family-focused care aimed at meeting fam- ily needs when a member or members have chronic illness requires nurses equipped with knowledge about families and their interactions.

■ Optimal nursing care for those with chronic illness involves nurses who are knowledge- able about developmental alterations, willing to hear and listen to the voiced needs without judgment, and able to become collaborators that empower multiple household members to reorganize routines and manage existing resources.

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277

Families in Palliative and End-of-Life Care

c h a p t e r 10

Rose Steele, PhD, RN

Carole A. Robinson, PhD, RN

Kimberley A. Widger, PhD, RN

C r i t i c a l C o n c e p t s

■ Palliative care is both a philosophy and a type of care.

■ Palliative care is “whole person” care that involves a focus on quality of life, or living well, for all family members when they are dealing with a life-limiting illness. It can start long before the end-of-life period, as early as at the diag- nosis of a life-limiting illness, and extend beyond death to bereavement.

■ The principles of palliative care are applicable in a sudden, acute event—such as an accident, suicide, or myocardial infarction—though the context is different because there is a shorter time span in which to work with a family. A pallia- tive approach complements the disease orientation that is often the focus of acute care.

■ The majority of palliative care is provided by family caregivers.

■ Skilled nursing interventions and relationships between nurses and families are crucial in creating positive outcomes in palliative and end-of-life care.

■ Interprofessional teamwork is essential in palliative and end-of-life care and the team is inclusive of family members.

■ People who have advanced, life-limiting illnesses worry about being a burden on their families and about the conse- quences of their death on their families. Family members worry about burdening their ill member. Everyone involved is often afraid. This fear can lead to communication problems, isolation, and lack of support within the family.

■ Perceived barriers to nurses providing quality end-of-life care may be ameliorated when the nurse understands palliative care principles.

■ Nurses need strong patient and family assessment and intervention skills to provide optimal palliative and end-of-life care.

■ End-of-life decision making is a process that involves all relevant family members identified by the ill person and evolves over time. Advance care planning is an important part of this process.

■ A “good” death is one that happens in alignment with patient and family preferences.

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Nurses encounter families who are facing end-of- life issues in virtually all settings of practice. From newborns to seniors in their nineties and older, peo- ple die, and their families are affected by the expe- rience. Nurses are in an ideal position to influence a family’s experience, either positively or negatively. Ideally, nurses facilitate a positive experience for families, one that will bring them comfort in the fu- ture as they recall what it was like when their loved one died. Unfortunately, not all families have a pos- itive experience, and it is often because health care providers do not know how to work effectively with families at this challenging time (Andershed, 2006). Yet, palliative and end-of-life nursing can be ex- tremely rewarding and professionally fulfilling. It offers an opportunity for personal growth in pa- tients, families, and health care providers; interac- tions among all concerned are especially meaningful (Webster & Kristjanson, 2002).

This chapter details the key components to con- sider in providing palliative and end-of-life care, as well as families’ most important concerns and needs when a family member experiences a life- threatening illness or is dying. It also presents some concrete strategies to assist nurses in providing op- timal palliative and end-of-life care to all family members. More specifically, the chapter begins with a brief definition of palliative and end-of life care, including its focus on improving quality of life for patients and their families. The chapter then outlines principles of palliative care and ways to apply these principles across all settings and regard- less of whether death results from chronic illness or a sudden or traumatic event. Two palliative care and end-of-life case studies follow.

PALLIATIVE AND END-OF-LIFE CARE DEFINED

Palliative care and end-of-life care are not synony- mous terms. End-of-life care focuses exclusively on the immediate period around death, whereas pal- liative care includes end-of-life care but extends for many months, even years (especially in children), and can coexist with treatments aimed at curing an illness (World Health Organization [WHO], 2006). Palliative care focuses on improving the quality of life of patients and their families facing problems associated with life-limiting illness. Pal- liative care helps families in these situations live

well by preventing and relieving suffering through early identification and excellent assessment and treatment of pain and other physical, psychosocial, or spiritual problems (WHO, 2006). Employing a team approach, palliative care offers a support sys- tem to help patients live as actively as possible, and to help families cope during the patient’s illness and their own bereavement. Life is affirmed and dying is regarded as a normal process (WHO, 2006).

Focus on the family as a unit is a key principle in palliative care. Nowhere is this more evident than when a child is the patient. Support targets both individual family members and the family as a whole. The age range of patients receiving pe- diatric palliative care, typically 0 to 19 years of age, requires that children’s developmental, social, educational, recreational, and relational needs be considered. The developmental stage of the family must also be considered, regardless of the patient’s age.

Palliative care in adults developed primarily around care for patients with cancer. The current trend in palliative care, however, is an expanded focus on life-threatening illnesses beyond cancer. Patients and their families have similar needs for information, care, and support in a wide variety of chronic illnesses, including heart disease (Barnes et al., 2006), muscular dystrophy (Dawson & Kristjanson, 2003), motor neuron disease (Dawson & Kristjanson, 2003; Hughes, Sinha, Higginson, Down, & Leigh, 2005), dementia (Caron, Griffith, & Arcand, 2005), Parkinson’s disease (Goy, Carter, & Ganzini, 2007), and neurodegenerative diseases (Kristjanson, Aoun, & Oldham, 2006), as well as when patients are simply of an advanced age (Forbes-Thompson & Gessert, 2005).

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Palliative care is about nurturing and maintain- ing quality of life from diagnosis of life-limiting illness through bereavement. The approach en- compassed by palliative care principles can be used in any setting with any family, regardless of how long a person has to live or how sudden the death is. Murray and Sheikh (2008) described three main trajectories of decline at the end of life. Awareness of these trajectories (Fig. 10-1) helps nurses rec- ognize when palliative care may best be intro- duced. Palliative care can be offered alongside care that is curative in intent (Murray, Kendall, Boyd, & Sheikh, 2005). But at some point in the illness trajectory, the primary goal of care shifts from cur- ative to palliative intent. This point often occurs when there are no available curative treatments, or treatments are no longer effective or are associated with burden that is no longer tolerable to the pa- tient. It is well recognized that communication about the transition of care from curative to pal- liative intent is difficult but crucial (Marsella, 2009). It requires discussion about shifting the focus to quality of life rather than quantity of life. When a sudden or traumatic event occurs, there is little time to hold such discussions. But when someone has a protracted illness, this discussion can be introduced gradually and can be repeated over time.

Unfortunately, in many clinical settings, pallia- tive care is raised only in the last few days or weeks of life, even when death has been anticipated. The introduction of palliative care is particularly

challenging for health care providers when patients suffer from illnesses that are difficult to prognosti- cate, such as advanced lung, heart, and liver disease (Fox et al., 1999). Nevertheless, it is important to ensure that patients, family members, and health care providers are aligned in their goals for care (Thompson, McClement, & Daeninck, 2006) and have a common understanding of what quality of life means for the patient and family. Goals of care and the meaning of quality of life will be unique in each situation and care should be tailored to the needs of each particular family (Heyland, Dodek, et al., 2006).

Death occurs in many settings, from various causes, and across the life span. Some differences can be expected in families’ experiences depending on the context, for example:

■ Where the death takes place (e.g., home versus intensive care unit)

■ The cause of death (e.g., natural progression of a chronic illness versus an unexpected, acute event)

■ The dying trajectory (e.g., over a period of years versus sudden)

■ The age of the family member who is dying (e.g., a 3-year-old child versus an 85-year-old person)

■ The cultural and spiritual backgrounds of families (e.g., white versus Chinese; religious faith versus no faith)

No matter the context, the principles of pallia- tive care should be consistent, with implementation tailored to address the particular family and the family’s context. Consistent use of these principles contributes to high-quality palliative and end-of- life care. See Box 10-1 for some of the basic prin- ciples of palliative care.

Identifying Relevant Literature The amount of research about the provision of palliative and end-of-life care to adults is growing. Research in pediatric palliative care is much more limited, but many of the reported issues for fami- lies are similar across the life span. An electronic search of the Cumulative Index to Nursing and Allied Health Literature (CINAHL) database from 2002 until summer 2012 uncovered more than 2000 articles that reported on some aspect of patient or family perceptions of the palliative,

Families in Palliative and End-of-Life Care 279

F u

n c ti

o n

Death

Number of Deaths in Each Trajectory, Out of Average 20 Deaths Each Year Per

UK General Practice List of 2000 Patients

Cancer (n = 5) Organ failure (n = 6) Physical and cognitive frailty (n = 7) Other (n = 2)

High

Low FIGURE 10-1 The three main trajectories of decline at the end of life. (Reproduced from Murray, S. A., & Sheikh, A. [2008]. Care for all at the end of life. British Medical Journal, 336[7650], 958–959, with permission from BMJ Publishing Group Ltd.)

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end-of-life, or bereavement care provided to the family by health professionals. Despite the num- ber of articles in existence, only about a third pre- sented research findings or a systematic review of research findings and most of the research was published in the last 4 years. Virtually all areas of palliative care need more research to strengthen the evidence base. The studies included explo- ration of patient and family concerns and needs in relation to different diseases (cancer being the most common); causes of death (sudden deaths, deaths after illness); care settings (long-term care, acute hospital care, critical care, home, and hospice); ages (pediatric to elderly patients); coun- tries; and cultures.

Often, great variation existed in beliefs and needs within a given cultural or other type of group, as well as within individual families (Aspinal, Hughes, Dunckley, & Addington Hall, 2006; Heyland, Dodek, et al., 2006; Torke, Garas, Sexson, & Branch, 2005). Therefore, one cannot determine from the lit- erature what the exact needs of, for example, family members of an elderly African American person liv- ing with Alzheimer’s disease in a long-term care set- ting will be. But the literature does highlight the key considerations in providing palliative and end-of-life care, important areas to assess for any family facing life-limiting illness, and interventions that may be helpful for many families or that can be adjusted to fit with a particular family’s assessed needs. The lit- erature found through this search, plus seminal arti- cles, forms the evidence base for the remainder of this chapter.

KEY CONSIDERATIONS IN PALLIATIVE AND END-OF-LIFE CARE

In order to provide optimal palliative and end-of- life care, there are key areas that must be consid- ered, such as the following: nurses’ own personal assumptions and biases about death and dying; your personal assumptions about people and their back- grounds; the involvement of the family in all aspects of care; the involvement of the interprofessional team; the inclusion of bereavement care as part of palliative care; and potential barriers to optimal pal- liative and end-of-life nursing care.

Personal Assumptions and Biases About Death and Dying To provide optimal palliative and end-of-life care, nurses need to be aware of their own assumptions and biases about death and dying. As a nurse, it is im- portant to explore your own beliefs, attitudes, and personal and professional experiences to understand how they may influence your attitudes toward death, dying, and bereavement. For example, if you believe that a family member should be physically present with someone who is dying, you may find it difficult to work with family members who choose not to be present. It is neither possible nor wise to separate the “nurse as person” from the “nurse as professional,” because if your personal reactions are ignored, you are less able to focus on meeting the needs of patients and their families (Davies & Oberle, 1990).

Many nurses do not know how to deal with dying and death. They are afraid, nervous, or anxious when faced with a dying patient and grieving family. But some nurses experience great satisfaction when working with dying patients. They have developed their palliative knowledge and skills, not simply through caring for many dying patients, but through reflecting on their experiences with those patients and in their personal lives, on the meaning of life and death, and on their own behavior. They are able, therefore, to provide competent physical care and also to be a welcome presence to those who are dying and their family members. All nurses, from novice to expert, need to develop basic competencies in the area of death and dying, from how to provide effec- tive symptom management, using both pharmaco- logical and nonpharmacological therapies, to being comfortable enough with death and dying that they can be present for family members. See Box 10-2 for

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BOX 10-1 Palliative Care Principles

■ Palliative care begins as soon as there is a diagnosis of life-limiting illness.

■ Palliative care can occur concurrently with care that is curative in intent.

■ The focus of palliative care is on supporting and en- hancing quality of life.

■ Patient and family are cared for as a unit. ■ Attention is paid to physical, developmental, psycho-

logical, social, and spiritual needs and concerns. ■ Education and support of patient and family are

crucial. ■ An interprofessional approach is required. ■ Care extends across settings. ■ Bereavement support is part of good palliative care.

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Families in Palliative and End-of-Life Care 281

some key areas of focus when seeking education about palliative and end-of-life care.

As a novice nurse, you can develop these compe- tencies by building on your own strengths and learn- ing ways to become more comfortable with death and dying. It is often helpful to begin with your own experiences around loss, death, and dying. Reflecting on your beliefs about life and death will help clarify your understanding of and appreciation for the human condition—the only thing certain in life is that everyone will die. This reflection will form the foundation for the inner strength that will enable you to provide optimal palliative and end-of-life care (Davies & Oberle, 1990). You may want to further your education on death, dying, and providing care at life’s end through one of the many available re- sources, such as workshops, books, and conferences; best practice guidelines (Registered Nurses’ Associ- ation of Ontario, 2011); or even popular movies (e.g., Life as a House; One True Thing). Gaining knowledge through formal education can help improve your comfort with providing care to patients facing a life- threatening illness and their families (Kwak, Salmon, Acquaviva, Brandt, & Egan, 2007).

Personal Assumptions and Biases About People and Their Backgrounds An underlying principle in palliative care is respect for persons. As a nurse, it is helpful to be aware of the assumptions and stereotypes that you hold about

the people you care for because assumptions and stereotypes get in the way of person- and family- centered care. Part of good palliative and end-of-life care is recognizing that each and every person is valuable in their own right; however, this is some- times negatively influenced by judgments about a particular person’s or family’s worth. Valuing appre- ciates the possibility that every human being has the potential for actualization or optimal development (Davies & Oberle, 1990; Widger, Steele, Oberle, & Davies, 2009).

Sometimes, assumptions and biases about people relate to their cultural or spiritual background. Sim- ilar to exploring your assumptions and biases about death and dying, it is important to recognize your own cultural or spiritual background or previous ex- periences with other cultures and how they might influence your practice, as well as your expectations of others (Huang, Yates, & Prior, 2009). For exam- ple, if you do not understand the importance of an Aboriginal smudging ceremony to a family, you may be unwilling to create an environment that al- lows for such a ceremony within a hospital setting. The cultural and spiritual implications discussed elsewhere in this text also are relevant to quality palliative care. Effectively implementing the pallia- tive care philosophy means that you must be sensi- tive to diversity and able to deal with issues that arise when caring for people with varied cultural and spiritual backgrounds (Davies & Oberle, 1990). Cultural beliefs, as well as spirituality, spiritual

BOX 10-2 Key Areas of Focus for Education in Palliative and End-of-Life Care

The Registered Nurses’ Association of Ontario (2011) rec- ommends that entry to practice nursing programs and post-registration education should incorporate specialized end-of-life care content that includes the following areas:

■ Dying as a normal process, including the social and cul- tural context of death and dying, dying trajectories, and signs of impending death

■ Care of the family (including caregiver) ■ Grief, bereavement, and mourning ■ Principles and models of palliative care ■ Assessment and management of pain and other symp-

toms (including pharmacological and nonpharmacologi- cal approaches)

■ Suffering and spiritual/existential issues and care ■ Decision making and advance care planning ■ Ethical issues ■ Effective and compassionate communication ■ Advocacy and therapeutic relationship-building ■ Interprofessional practice and competencies ■ Self-care for nurses, including coping strategies and self-

exploration of death and dying ■ End-of-life issues in mental health, homelessness, and

the incarcerated ■ The roles of grief and bereavement educators, clergy,

spiritual leaders, and funeral directors ■ Knowledge of relevant legislation

Source: Registered Nurses’ Association of Ontario. (2011). Best practice guidelines: End-of-life care during the last days and hours. Toronto, ON: Author. Retrieved from http://rnao.ca/sites/rnao-ca/files/End-of-Life_Care_During_ the_Last_Days_and_Hours_0.pdf

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beliefs, or faith, may be important in how some pa- tients and families cope with illness (Aspinal et al., 2006; Donovan, Williams, Stajduhar, Brazil, & Marshall, 2011; Ferrell, Ervin, Smith, Marek, & Melancon, 2002; Knapp et al., 2011; Perreault, Fothergill Bourbonnais, & Fiset, 2004; Robinson, Thiel, Backus, & Meyer, 2006; Sharman, Meert, & Sarnaik, 2005; Torke et al., 2005). Some may find strength and renewed connection to their cultural or spiritual background, whereas others may ques- tion previously held beliefs. It is very important that you do not impose your own beliefs on the patient and family; you need to determine what is most im- portant to them. Although across cultures different needs may exist, there is likely more similarity than differences among cultures in terms of basic human needs for connections with others, physical care, dignity, and support (Kongsuwan, Chaipetch, & Matchim, 2012). On the other hand, it is important to remember that there may be a great deal of di- versity within cultures or faiths. This means there will never be a single approach that is appropriate for all people from a particular culture or faith group, so one of the best strategies is to ask families about their beliefs and preferred way of doing things (Kleinman & Benson, 2006). From this place of understanding, nurses can negotiate care so that it aligns as closely as possible with the family’s val- ues and beliefs and demonstrates a fundamental respect for people.

Involvement of the Family Life-threatening illness is often referred to by fam- ily members as “our” illness (Ferrell et al., 2002). When the ill person is having a “good” day, so is the family caregiver (Stajduhar, Martin, Barwich, & Fyles, 2008). If the ill person is in emotional or physical pain or has difficulty coping with the illness, the caregiver’s suffering dramatically in- creases as well (Brajtman, 2005; Milberg & Strang, 2011; Sharman et al., 2005). Siblings too may suffer if parents are too focused on the ill child to meet sibling needs (de Cinque et al., 2006; Horsley & Patterson, 2006). Therefore, interventions directed at one family member can also be supportive to other family members, and this is the case whether the ill person is a child or an adult. Family members feel supported when they believe that professionals have the best interests of their loved one at heart. As a result, nurses need to ensure that the patient

is well cared for, but also keep in mind that inter- ventions directed at family members as a group and individually have been found to be most effec- tive in supporting families and achieving the best outcomes (Northouse, Katapodi, Song, Zhang, & Mood, 2010).

Among the top concerns of dying patients is the well-being of their family members in terms of caregiving burden and their ability to cope after the death (Aspinal et al., 2006; Fitzsimons et al., 2007; Jo, Brazil, Lohfeld, & Willison, 2007; Kristjanson, Aoun, & Yates, 2006; Kuhl, 2002; Perreault et al., 2004). Even ill children may make decisions based on what they believe is best for their family rather than what they particularly want (Hinds et al., 2005). Patients do not want to become a burden to their families (Fitzsimons et al., 2007; Heyland, Dodek, et al., 2006; Heyland et al., 2005). If pa- tients know that their family is well supported, it may reduce their own suffering.

Family members provide the majority of care for persons with life-threatening illness, and a home death relies on their strong involvement (Grande et al., 2009; Stajduhar, Funk, Jakobsson, & Ohlen, 2010; Stajduhar, Funk, Toye, et al., 2010). Family members carry many burdens when a family mem- ber is dying, including ill health (e.g., depression, back pain, shingles, difficulty sleeping, and preex- isting chronic illnesses), conflicting family respon- sibilities (e.g., caring for the ill parent or spouse plus their own children), little time to meet their own needs, cumulative losses, fear, anxiety, insecurity, financial concerns, loss of physical closeness with a spouse, and lack of support from other family members and health professionals (Corà, Partinico, Munafò, & Palomba, 2012; Ferrell et al., 2002; Funk et al., 2010; Grande et al., 2009; Jo et al., 2007; Kenny, Hall, Zapart, & Davis, 2010; Osse, Vernooij, Dassen, Schade, & Grol, 2006; Perreault et al., 2004; Proot et al., 2003; Riley & Fenton, 2007; Robinson, Pesut, & Bottorff, 2012; Sherwood, Given, Doorenbos, & Given, 2004; Wollin, Yates, & Kristjanson, 2006).

Moreover, the work of caregiving can be both physically and mentally exhausting (Riley & Fenton, 2007; Robinson et al., 2012; Sherwood et al., 2004). There also may be an ambivalent sense of waiting for the person to die but not wanting the person to die (Riley & Fenton, 2007). Family members may expe- rience these issues whether their relative is mostly at home (Andershed, 2006) or in an institutional setting

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(Abma, 2005). They often have increased responsi- bilities and may view the situation as burdensome (Andershed, 2006). Yet, family caregivers often are more concerned about the care of the dying person than about their own health (Robinson et al., 2012), so as not to burden the patient or take focus off the patient (Fridriksdottir, Sigurdardottir, & Gunnarsdottir, 2006; Grande et al., 2009; Konrad, 2008; Perreault et al., 2004; Proot et al., 2003; Riley & Fenton, 2007). A recent study found that one of the most effective ways of supporting family caregivers is to help them fulfill their caregiving role rather than focus on their personal needs (Robinson et al., 2012).

Although patients may want to remain at home, family members often have to assume extra respon- sibilities, such as administering medications, which can lead to a great deal of anxiety (Kazanowski, 2005). Further, when patients choose to receive care or die at home—perhaps to increase their quality of life through greater normalcy; increased con- tact with family, friends, and pets; and the familiar, comfortable surroundings (Hansson, Kjaergaard, Schmiegelow, & Hallström, 2012)—this location may not be the caregiver’s first choice. For some families, a home death brings additional burdens, worry, and responsibility, and the home becomes more like an institution (Brazil, Howell, Bedard, Krueger, & Heidebrecht, 2005; Funk et al., 2010). Decisions related to care location must be made with family members because the course chosen has a profound impact on the well-being of both the patient and the family (Stajduhar, 2003; Tang, Liu, Lai, & McCorkle, 2005). Recognize too, however, that family caregivers often cannot express their preferences if they differ from those of the ill person and may need assistance from a nurse to navigate the competing demands and priorities (Robinson et al., 2012).

Family members may not be available or able to give care at home. Patients and family members may perceive that hospitals or hospices are able to provide a higher quality of end-of-life care than can be given at home, or the patient and family may feel a close connection to the health care providers in the institution (Tang et al., 2005). Some family members may experience profound guilt if they are not able to provide end-of-life care at home. Health care professionals can alleviate some of this guilt if they alert patients and families early on that plans for location of care may need to change as

time goes on to ensure provision of the best possi- ble care (Stajduhar, 2003).

Family caregivers may be vulnerable to burnout if they are not able to cope with the caregiving re- quirements (Proot et al., 2003). The burden may be increased by the physical and emotional demands of the patient; reduced opportunities for the care- giver to participate in usual activities; and feelings of fear, insecurity, and loneliness (Proot et al., 2003). Caregiver strain also may increase when pa- tients need more assistance with activities of daily living or have greater levels of psychological and ex- istential distress. Differences may exist in needs based on age and sex, with younger caregivers hav- ing more concerns about finances and maintaining social activities and relationships. Female caregivers may have more difficulties with their own health (lack of sleep and muscle pain), with transportation, coordinating care, and feeling underappreciated (Osse et al., 2006). When a child dies, from any cause, mothers in particular have a greater risk for psychiatric hospitalization and death from suicide or accidents shortly after their child’s death, com- pared with those who have not experienced a child’s death (Li, Laursen, Precht, Olsen, & Mortensen, 2005; Li, Precht, Mortensen, & Olsen, 2003). Be- reaved mothers also have a greater risk for death from cancer and cardiovascular disease long after their child has died (Li, Johansen, Hansen, & Olsen, 2002; Li et al., 2003, 2005).

On the other hand, some people report positive aspects of caregiving, such as feelings of satisfac- tion, greater appreciation for life, greater purpose and meaning to life, increased closeness and inti- macy, newfound personal strength and ability, and the opportunity to share special time together and show their love for their family member (Andershed, 2006; Ferrell et al., 2002; Grande et al., 2009; Hudson, 2006; Jo et al., 2007; Riley & Fenton, 2007; Sherwood et al., 2004; Steele 2005a, 2005b; Steele & Davies, 2006). Some family members may view care provision as an opportunity and a privilege (Hudson, 2006; Jo et al., 2007; Kazanowski, 2005; Sherwood et al., 2004). Hudson (2006) suggested a link between the caregiver’s ability to see the positives in the situ- ation and both better coping and less traumatic grief. It is important, therefore, to help families uncover the positive aspects and help families recognize the value in what they are doing because it may con- tribute to their overall well-being and may enhance their experience. Further, when high-quality care and

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optimal family support are provided, research indi- cates that adult family members who care for another adult family member live longer after the patient’s death (Christakis & Iwashyna, 2003). Similarly, some researchers have found links between parents’ satis- faction with care, or assessment of care quality, and their coping ability or emotional state in the years after the child’s death (Kreicbergs et al., 2005; Rosenberg, Baker, Syrjala, & Wolfe, 2012; Surkan et al., 2006). Nurses are in an excellent position to identify and foster a family’s strengths, as well as to identify, prevent, and alleviate many of the negative aspects of caregiving. Through provision of optimal palliative and end-of-life care, nurses can have a sig- nificant, lifelong effect on the well-being of family members.

Involvement of the Interprofessional Team Although the focus of this chapter is on the role of the nurse, provision of care through an interprofes- sional team approach is one of the principles of pal- liative care. The composition of the team may look quite different depending on the care setting. For example, in a rural setting, the team may be com- prised of a family physician and a nurse, whereas in a large urban setting there may be a team of pallia- tive specialists including palliative physicians, ad- vanced practice nurses, psychologists, spiritual care advisors, pharmacists, social workers, and volunteers. In all settings, nurses are core team members. The interprofessional team approach focuses on health

professionals collaboratively working with each other and with a patient/family as members of the team to develop and achieve common goals (Oliver, Porock, Demiris, & Courtney, 2005). Despite shar- ing common goals, each team member will bring different ideas and skills to the team, which is both the strength and the challenge of the interprofes- sional approach. Multiple perspectives contribute to holistic care and the ability to meet the multiple complex patient and family needs that arise in pal- liative care. The challenge is how to make best use of each person’s contributions while negotiating dif- ferences in perspective and respectfully managing tensions around professional boundaries and expert- ise. Palliative care is known for blurring of team member roles in order to meet the current needs of the patient and family members.

An interprofessional model of care is different from a multiprofessional model. In health care settings, traditional roles and expectations among the professions involved in providing care can raise barriers to integrated and effective teams. Traditional medical services have been based on a multiprofessional model that has tended to hinder the development of an effective team because a multiprofessional team is composed of individuals from different professional backgrounds who work with the same patient and family, but who may develop individual goals and work relatively independently. In contrast, the interprofessional team approach focuses on collaboratively working with a patient/family to develop and achieve com- mon goals. See Box 10-3 for a summary of the

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BOX 10-3 Interprofessional Versus Multiprofessional Teams

Multiprofessional Team ■ Medical treatment model ■ Fragmented approach to care ■ Centralized control ■ Autocratic team leader ■ Decision making by team leader ■ Vertical communication between professionals ■ Treatment geared toward intraprofessional goals ■ Separate goals among professionals ■ Professional goals are basis of plan ■ Families are peripheral ■ Meetings/rounds involve individual professional

reporting

Interprofessional Team ■ Holistic, “patient-centered” approach to care ■ Group control ■ Facilitative team leader ■ Decision making by consensus ■ Leadership by team members ■ Horizontal communication between professionals ■ Treatment geared toward interprofessional goals ■ Common goals among professionals ■ Patient goals are basis of care plan ■ Families are integral ■ Meetings/rounds involve group problem solving and

decision making

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differences between the interprofessional and multiprofessional approaches.

For nurses, being an effective member of an in- terprofessional team often means that they share information and consult with others on the team, mediate on behalf of patients and families when necessary, and act as a liaison between various members, institutions, and programs. As a novice nurse, one of the key things you can do is to learn and understand the patient’s and family members’ hopes, preferences, beliefs, fears, and goals and to share this understanding with the team. Knowledge about group dynamics is invaluable in learning how to become a successful team member. Everyone needs to know and accept that each member of the team is unique and valuable, and good communi- cation skills are crucial so that supportive rather than defensive communication can be fostered. A lack of communication among health professionals is common and frustrating for families because they then receive conflicting information or need to repeat information and relay decisions that have been made already (Antle, Barrera, Beaune, D’Agostino, & Good, 2005; Hammes, Klevan, Kempf, & Williams, 2005; Hudson, 2006; Macdonald et al., 2005; Perreault et al., 2004; Widger & Picot, 2008; Wiegand, 2006).

Bereavement Care One of the principles of palliative care is that care continues after the death and into bereavement. The need for follow-up with the family after the death by involved health professionals is considered by many families to be a crucial component of end- of-life care, but unfortunately one that is often miss- ing (Cherlin, Schulman Green, McCorkle, Johnson Hurzeler, & Bradley, 2004; D’Agostino, Berlin- Romalis, Jovcevska, & Barrera, 2008; de Jong-Berg & Kane, 2006; Kreicbergs et al., 2005; Macdonald et al., 2005; Meyer, Ritholz, Burns, & Truog, 2006; Widger & Picot, 2008; Wisten & Zingmark, 2007; Woodgate, 2006). Families sometimes feel aban- doned after the death, which adds to the grief they experience (D’Agostino et al., 2008; de Cinque et al., 2006; Heller & Solomon, 2005; Meert et al., 2007; Widger & Picot, 2008). Bereavement care is im- portant because family caregivers may experience negative effects, such as feelings of loneliness, sad- ness, and physical exhaustion caused by difficulty sleeping, as well as the aftermath of the demands of

caregiving (Funk et al., 2010). These feelings may be juxtaposed with feelings of relief that the pa- tient’s suffering has ended and that everything pos- sible was done to keep the patient comfortable (Hudson, 2006; Sherwood et al., 2004; Wollin et al., 2006). After the death, some caregivers may feel “lost” because they now have “free” hours that were previously devoted to caregiving (Sherwood et al., 2004). Support for families after the death may help prevent or alleviate prolonged suffering. Specific in- terventions for bereavement care are highlighted later in the chapter and in the second case study.

Barriers to Optimal Palliative and End-of-Life Nursing Care A major barrier to optimal palliative and end-of- life care for patients and their families arises from the limited formal education and training nurses receive (Espinosa, Young, & Walsh, 2008). Al- though some improvements have been made, his- torically little attention has been given to palliative and end-of-life care in nursing and other health care professionals’ curricula. In particular, health professionals report being unprepared to treat pain and symptoms effectively, emotionally support the dying person and his or her family, or deal with the ethical issues that may be present at end of life (Contro, Larson, Scofield, Sourkes, & Cohen, 2004; Davies et al., 2008; Feudtner et al., 2007).

Another barrier is the availability and usage of palliative services. Specialist palliative care services may not be available in all care settings, particularly at home or in more rural and remote areas, to pro- vide support to practicing health professionals in addressing learning needs or providing care to pa- tients and families. Even when appropriate hospice and palliative care services are available, a lack of understanding of palliative care on the part of health professionals can lead to delayed, or even a lack of, referral to these services.

Involvement of the patient and family members in the interprofessional team is a critical component of palliative care, yet barriers may exist that limit this involvement. In many cases, the program setup and lines of communication do not allow for fami- lies to be included to the extent they could and should be, nor do they allow for provision of be- reavement care by the health professionals who pro- vided care before the death. Although work needs to be done to remove the identified barriers, it is

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possible for nurses to practice high standards within constraining contexts. It is important to seek out opportunities to improve your knowledge and skills in palliative and end-of-life care and to be an advo- cate for the needs and views of patients and families regardless of barriers that may present themselves.

A different type of barrier that can be even more challenging to manage is the moral distress that can arise for nurses when they provide end-of-life care to patients and their families (Elpern, Covert, & Kleinpell, 2005; Espinosa et al., 2008). Moral dis- tress occurs when a person is powerless to carry out an action that he believes to be ethically appropri- ate. Some situations common to the provision of palliative care that may cause moral distress include the following:

■ Patients receiving medical treatments that are believed to be inappropriate and/or con- tributing to patients’ suffering (e.g., a ventila- tor, providing artificial nutrition and hydration via a gastrostomy tube)

■ Inadequate management of pain or other symptoms

■ Lack of communication with family members about prognosis

■ Provision of false hope to family members (Epstein & Degado, 2010)

Moral distress can affect nurses’ job satisfaction, physical and psychological well-being, self-image, spirituality, and decisions about their own health. Such distress may lead to burnout and leaving the work environment (Elpern et al., 2005).

FAMILY NURSING PRACTICE ASSESSMENT AND INTERVENTION

Nurses must possess strong patient and family as- sessment skills if they are going to provide optimal care (e.g., excellent pain and symptom manage- ment, psychosocial support), because the most appropriate interventions can be designed and im- plemented only once a family’s needs and goals have been assessed accurately. Your assessment will help you determine what a specific family or family member needs, and you can then tailor your approach and the interventions you offer in con- sultation with the family. Assessment and interven- tion are, therefore, intertwined and are discussed together in the following sections.

Keep in mind that assessment should be ongoing and sequential, building on what is known about the family and shaping interventions to meet the fam- ily’s changing needs and preferences throughout the palliative and end-of-life process. This section is or- ganized around interventions that may be helpful to families. Unfortunately, definitive research with high-quality designs to identify the best interven- tions for promoting optimal long-term outcomes for family members is lacking (Grande et al., 2009; Harding, List, Epiphaniou, & Jones 2012; Hudson, Remedios, & Thomas, 2010; Rosenberg et al., 2012; Stajduhar, Funk, Toye, et al., 2010). The interventions discussed are informed by existing re- search evidence and have been used successfully in the authors’ clinical practices. The most important thing to remember is that each family is unique. Al- though your practice should be evidence informed, do not try to apply theory and research uncritically. What works for one family or family member may not be right for another. You must not lose sight of the need to assess and critically analyze each situa- tion on its own merits, and actively involve the fam- ily in the process. Because we can never know whether an intervention will be useful to a particular family, interventions should always be offered ten- tatively and then evaluated from the family perspec- tive. An intervention is only helpful if a family or family member experiences it as helpful.

It is not possible to cover every potential sce- nario in palliative and end-of-life care; therefore, the focus is on discussing the main assessment and intervention concepts that are needed for palliative and end-of-life care. Most deaths you will en- counter when providing end-of-life care occur as the result of chronic disease rather than an acute event. Therefore, these situations are the focus of the remaining discussion and the case studies.

Connections Between Families and Nurses The relationships that families develop with health care professionals have a significant effect on how families manage palliative and end-of-life events (Robinson, 1996). In your nursing education, you may have learned about the characteristics of a helping or therapeutic relationship, but in practice, nurses often speak of their “connections” with fam- ilies rather than their “relationships.” Making a connection with family members helps uncover

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what is meaningful to them and builds a bridge between you as human beings.

Understanding the family’s situation apart from the illness is important (Benzein & Britt-Inger, 2008; Contro, Larson, Scofield, Sourkes, & Cohen, 2002, 2004; Maynard, Rennie, Shirtliffe, & Vickers, 2005; Steele, 2002; Steele & Davies, 2006; Surkan et al., 2006; Tomlinson et al., 2006). Asking about their previous experiences with death, any recent or concurrent life changes (e.g., new job, new house, new baby), or work and school responsibilities (e.g., self-employed, supportive work environment, near- ing final examinations) may allow you to gain a more in-depth perspective and appreciate the cre- ativity and ingenuity of their efforts.

Connecting allows you to apply your general sci- entific knowledge in ways that are more likely to be successful for individual patients and their families, given their specific background, needs, and ways of being in the world. Connecting is a two-way process where both the nurse and the patient/family mem- bers get to know one another at a personal level and begin to establish trust. With trust comes a greater sense of comfort and ease for the family, and an in- creased ability for nurses to offer effective interven- tions and to act as advocates (Davies & Oberle, 1990; Robinson, 1996).

Communication and interpersonal skills can fa- cilitate or hinder connecting with patients and fam- ilies. Therefore, nurses need to be aware of how their personal styles of interaction and communica- tion can make, sustain, and break connections. These connections need to be attended to and nourished over time. Families typically are not used to talking about death and dying (Andershed, 2006). The presence of a mutual, trusting relationship is foundational to palliative assessment and interven- tion (Davies & Oberle, 1990; Robinson, 1996; Widger et al., 2009) and is crucial in providing a safe environment for difficult and emotional con- versations to occur.

Nursing interventions that promote connections and trusting relationships include the following: careful listening to the family’s experience with illness and suffering, asking good questions that encourage family members’ understanding of the differences in their perspectives, demonstrating compassion by showing that you are touched by the family’s suffering, remaining nonjudgmental, offer- ing a new perspective or information through open and honest communication, working with the family,

acknowledging family strengths, and being reliable and accessible (Aspinal et al., 2006; Heyland, Dodek, et al., 2006; Kristjanson, Aoun, & Oldham, 2006; Mok, Chan, Chan, & Yeung, 2002; Robinson, 1996; Shiozaki et al., 2005; Torke et al., 2005). It is impor- tant to show families through your attitude and behavior that you not only have the knowledge to assist them, but that you are willing and able to do so. The sense of security and trust a family experi- ences in relationships with health care professionals can add to and strengthen the family’s resources (Andershed, 2006). Simple acts of addressing family members by name, smiling, making eye contact, showing emotion, and physical contact such as a hand on the shoulder can foster connections be- tween family members and the health professional (Heller & Solomon, 2005; Macdonald et al., 2005; Pector, 2004a; Sharman et al., 2005).

It is the nurse’s responsibility to take the lead in developing a trusting relationship with families and to provide an environment of openness where all family members feel comfortable asking questions. Completion of a brief family genogram is one effec- tive way of learning family members’ names, rela- tionships, and level of involvement in care, including decision making. Getting to know each family mem- ber demonstrates respect for the patient’s and family members’ individuality, dignity, needs, concerns, and fears (Aspinal et al., 2006; Dwyer, Nordenfelt, & Ternestedt, 2008; Gordon et al., 2009; Hinds et al., 2009; Kristjanson, Aoun, & Oldham, 2006; Midson & Carter, 2010; Monterosso & Kristjanson, 2008; Riley & Fenton, 2007; Shiozaki et al., 2005). Further, it enables recognition of differences within the family. Box 10-4 provides some questions to help you open up communication and learn about family members’ perspectives as you build your connec- tions with a family.

Making a connection does not necessarily hap- pen instantly, nor does it have to take a lot of time; however, it does require attention and cannot be taken for granted. Sometimes you will feel a con- nection easily exists between you and a family; other times, you may need to make an extra effort to get to know the family and to establish a rela- tionship. You might feel as if you have to “prove” your trustworthiness to the family or set aside your own negative reaction to a particular family or fam- ily member. Developing your reflective practice and seeking the assistance of an experienced nurse may be helpful.

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Unfortunately, all too often, families report a lack of support and sense of connection that contributes to negative experiences and dissatisfaction with care (Andershed, 2006). Even single incidents related to poor communication and interpersonal skills on the part of health professionals can contribute to intense emotional distress, such as anxiety, depression, and guilt, long after the event (Contro et al., 2002, 2004; Gordon et al., 2009; Meert et al., 2007; Pector,

2004a; Rini & Loriz, 2007; Surkan et al., 2006; Widger & Picot, 2008). Understanding this leads some nurses to worry about saying the wrong thing. Listening carefully may assist you to know where to start and sometimes there are no “good” words to say, but simply being present and staying with the family can be helpful.

Humor may be one way to facilitate a connec- tion with families, but it is important first to assess

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BOX 10-4 Key Questions to Ask Families to Open Up Communication and Obtain Family Members’ Perspectives

Ideally, questions to open up communication and obtain family members’ perspectives should be asked with all involved family members present, including the patient. Keep in mind, however, that family members may not want to burden their ill member with their emotions and concerns, so you may find that some of these questions need to be asked of family members when they are alone. You will need to finesse questioning depending on where the ill family member is in the palliative care experience.

Start by saying, “I’d like to understand what it has been like for your family to live with [illness].” Then, use the fol- lowing key questions to open up communication and ob- tain family members’ perspectives. It is often helpful to indicate that you expect different family members will have different views about things. So you may need to ask a question multiple times in order to have all family members’ views.

■ What is your understanding of what is happening with [ill family member]?

■ What experience do you have as a family in dealing with serious health problems? With death and dying?

■ If you were to think ahead a bit, how do you see things going in (the next few days, the next few weeks, the next few months [use the timeframe that is most appropriate])?

■ How are you hoping this will go? ■ What is most important for me to know about your

family? ■ What are you most concerned or worried about? ■ When you think about your loved one getting really sick,

what fears or worries do you have? ■ I’ve found that many families caring for someone with

this condition think about the possibility of their loved one dying. They have questions about this. Do you have questions?

■ Who is suffering most? ■ How do they show their suffering?

■ How are you managing? ■ I understand that different family members will have dif-

ferent talents or strengths: how do you most want to be involved?

■ How can I be most helpful to you at this time? ■ How does your family like to talk about challenging

things? ■ How have you been talking about the situation you find

yourselves in? Who has been involved? ■ Is there anyone involved who is important and who

I haven’t met? ■ How are important decisions made in your family? How

would you like important decision making to go now? ■ Families often find it helpful to talk about the care they

want at end of life. Have you been able to have a con- versation about this? I wonder if I might be able to help you start this conversation.

■ Do you have any cultural beliefs, rituals, or traditions around illness and end of life that I should be aware of?

■ What have you found most helpful or useful to you as a family at this time?

■ What do you most need to manage well? ■ What has not been helpful? ■ What sustains you in challenging times? ■ What is going well? ■ What do you most want to be doing at this time? What

brings you joy (or helps you get out of bed in the morning)?

■ If your loved one were to die tonight, is there anything you have not said or done that you would regret? If so, how can I help you do or say what you need to do? (Ask this of the patient as well, i.e., If you were to die suddenly, is there anything you would regret not doing or saying?)

■ In families, often many things are happening apart from the illness that we do not know about. Is there anything going on that is adding to what you are already coping with?

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receptivity to humor (Dean & Gregory, 2005). Generally, when families use humor, it is fine to then enter into the humor with them, but it may be more difficult for the nurse to initiate humor. The use of humor can provide respite from think- ing about the illness, relieve tension, and demon- strate respect for the patient and family members as people if it fits with their way of being. Some strategies that nurses can use to make a connection

between themselves and patients and families are provided in Box 10-5.

Relieving the Patient’s Suffering What do dying people want? They want adequate pain and symptom control, to avoid inappropriate prolongation of dying, to achieve a sense of control, to relieve burdens for their loved ones, and to

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BOX 10-5 Establishing and Sustaining Connections With Families

■ Patients and families need to know who you are; when you meet a patient and family for the first time, make them feel welcome, introduce yourself by name, then find out who they are and learn about them as people as well. Ask them how they would like to be called (e.g., by full name or first name). Ask them about their relationship to one another (e.g., to find out whether they are partners, sisters, friends). This is a good time to begin a genogram, which can be supplemented over time.

■ Begin any interaction by clarifying your role and telling the patient and family about your “professional” self so you establish your credentials. For example, “Hello, Mr. Li. My name is Rose Steele. I’m a third-year stu- dent nurse. Sandyha Singh, the Registered Nurse su- pervising me, and I are taking care of your wife today. I’m working until 3:30 p.m. today and also will be here tomorrow, so I’ll be her nurse then too. I have worked on this unit for the past three weeks, so I am pretty familiar with all the routines, but I’m really inter- ested in finding out how we can fit in with what you and Mrs. Li want.”

■ The best approach is not “This is how we do it here,” but rather “How do you like to do this?” and “How can we find a way to do that in this context?” Sometimes we cannot do it exactly the way the patient and/or family would like, so then we need to ask about what the most important pieces are so that we can come as close as possible to the desired result.

■ Ensure a comfortable physical environment; let patients and families know the routines and how they can get help as needed, to provide a sense of familiarity and help you begin to make the connection.

■ Privacy is often an issue and it is critical to some of the sensitive discussions that occur in palliative and end-of- life care. Try to find a private location before broaching sensitive issues.

■ Describe who other team members are and what their roles are so families understand the context. Family members often do not know who to ask for what.

■ Attend to the patient’s and family’s immediate state of well-being; it is impossible to connect with someone when you have not attended to their basic needs first. If a patient is lying in a wet bed or is in pain, family members will not be open to a “connecting” conversa- tion with the nurse. When you demonstrate good as- sessment and intervention skills that result in enhanced comfort, your practice invites trust.

■ Be sensitive to an individual’s particular characteristics such as cultural or gender differences; making eye con- tact is a useful strategy for connecting in many cases, but a First Nations person, for instance, may be uncom- fortable with direct eye contact. Touch is often welcome but is not universally experienced as supportive. You may need to ask about what provides comfort to the patient and family members.

■ Do not let your observations of particular characteristics limit your perception by stereotyping the person; be aware of your own assumptions and biases, guarding against “operationalizing” your biases—for example, do not assume that an elderly person is deaf.

■ Be sensitive to a person’s way of being. Some people are outgoing and talkative; others are more withdrawn. It is a good idea to check out your observations rather than simply assuming that your interpretation of what you are seeing is correct. For example, some people be- come very quiet and stoic when in pain. This approach may be their way of managing pain, and not their usual “way of being.” Humor may be appropriate for some people or situations, but not for others. Responding to people in ways that match their style enhances their comfort level. Another useful habit is to use the family’s language. If you need to use medical terms, be sure to

Continued

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BOX 10-5 Establishing and Sustaining Connections With Families—cont’d

explain them. Sometimes family members use incorrect words (e.g., prostrate instead of prostate). Generally, the best way to handle it is to use the correct word in a matter-of-fact way and say something like, “Oh yes, I understand that the problem is prostate cancer.”

■ Not all people will want the same level of connection; you need to respect where the person is coming from and not try to force a deeper relationship. Families deal- ing with prolonged, life-threatening illness often have negative health care encounters that lead them to be wary of new health care professionals and make them careful in how much, and in whom, they trust. Some- times it takes time and the repeated demonstration of trustworthy behaviors before they are willing to begin to trust a new health care professional.

■ Patients and families differ in their expectations of what health care workers should provide; some only want information, some expect only physical care, and still others expect more of a supportive relationship. The key here is in asking for expectations. This does not mean that you can meet the expectations and you may want to preface the request with a statement such as, “To be most helpful to you, I need to know what you would like. I may not be able to do things ex- actly as you prefer, but we can work together to get as close as possible.”

■ Many times you will find that when you simply meet the patient’s and family’s expectations without imposing your own, further opportunities for connecting may evolve.

■ Once the connection has been made, it is important to pay attention to nurturing it so that it is sustained over time.

■ Sustaining the connection allows you to learn even more about the patient and family so you can continu- ally adapt your care according to their needs; it is also a way of demonstrating your trustworthiness by inviting the patient and family to get to know and trust you. When you are well connected, you are more likely to offer useful interventions that the family will accept.

■ Ways of sustaining the connection include spending time with the patient and family, asking good questions, noticing what they are doing that is positive or helpful, and being available. Sometimes the only thing we can do is to stay with patients and families as a witness to their suffering.

■ Making and sustaining the connection is a two-way process that has to do with sharing parts of yourself with patients and families as you seek a common bond. This process may mean revealing some personal details about your life and there are a few circumstances when

it is appropriate, for example, when the patient or family ask you a direct question about yourself or when you have had an experience that helps you understand what the family may be experiencing. Revealing personal de- tails can be helpful in inviting trust, but they should be brief and should not take the focus away from the pa- tient and family.

■ Continuity of care, such as having the same nurse be in contact with the same patient over some period of time, is important. It is critical that team members ef- fectively communicate with one another to support continuity of care.

■ It is not just the quantity but also the quality of time we spend with a family that makes the difference. For ex- ample, if you clear your mind before coming into the room, come to the bedside and are calmly attentive to the patient rather than doing multiple tasks while also talking, the encounter will seem longer and be more satisfying to the patient.

■ The “best” nurses are those who give the impression of “having all the time in the world,” even when they are really busy. One way of doing this is to come into the room and sit or stand by the bedside, even if only briefly.

■ Taking the time to “be there” for patients and families in- stead of being in a rush maintains the connection. This requires you to be mindful and to let go momentarily of all the demands that compete for your attention.

■ Even when you are not actually with patients and fam- ilies, it is important that they feel as if you will be available when they need you; simple things such as saying hello and good-bye at the beginning and end of shifts, and also at break times, help them know your availability. Let the patient and family know how long you are available and when you will be back (e.g., “I’m just popping in to see how your pain is and won’t be able to stay long, but I’ll be back in about half an hour and will be able to spend more time with you then”).

■ Informing patients and families so they know what to expect and keeping your word, such as being there when you say you will be, also sustain the connection.

■ Instead of having your routine set for the day, adapt your routine to what the patient and family need at the time.

■ Be flexible because you are always working under con- straints; share these constraints with patients and fami- lies, and tell them if you need to change the plan you have made with them.

■ Changing plans often requires the support of colleagues who can take over for you or help out as needed.

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strengthen relationships with loved ones (Singer, Martin, & Kelner, 1999). Concern about becoming a burden to their family may keep dying people from talking to family members about their fears, and about dying (Kuhl, 2002). You can see that family figures prominently for dying people. At the same time, family members are worried about burdening the dying person. These worries, cou- pled with health professionals’ avoidance of diffi- cult discussions because of fear of disrupting hope (Robinson, 2012), can create a conspiracy of silence that contributes to a sense of isolation and alone- ness for dying people and their loved ones. One of the ways nurses can be helpful is to assess who is talking to whom, who knows what, and what is holding people back from having conversations that nurture and strengthen the relationships that are often deeply desired within the family. Suffer- ing can be alleviated by inviting and assisting fam- ilies to come closer together and to engage in meaningful conversations.

This is not going to be possible, however, unless the dying person is physically comfortable. Ade- quate pain and symptom control is the first priority of dying people. It is also the first priority for family caregivers, who need to become skilled palliative care providers (Robinson et al., 2012). Witnessing the suffering of their dying family member when there is uncontrolled pain and symptoms is trau- matic for family members. Therefore, foundational to good family palliative and end-of-life care is knowledge and skills in pain and symptom manage- ment. Nurses need to understand the variety of symptoms common to patients at the end of life so they can anticipate, prevent when possible, recog- nize, assess, and effectively manage pain and symp- toms with both traditional and complementary therapies (see Chapter Web Sites later in this chapter for resources). Key to this is regular, systematic as- sessment using standardized assessment tools, such as the Edmonton Symptom Assessment System (ESAS; Cancer Care Ontario, 2005). Involving the dying person, as much as possible, in planning and treatment decisions supports the need for achieving a sense of control as more and more of life moves out of control.

Relieving suffering yields improved quality of life, but no single definition exists for the most important factors that contribute to a good quality of life (Johansson, Axelsson, & Danielson, 2006; Norris et al., 2007). This is because only the individual and

family know what constitutes quality of life for them. Individual needs must be assessed. Norris and col- leagues found higher patient quality of life ratings associated with a variety of activities, such as playing music that was meaningful to the patient, attending a place of worship, having a familiar health care team available at all times (for patients at home), and hav- ing individual preferences respected. Predictably, other components contributing to better quality of life include valuing everyday things, maintaining a positive attitude, having symptoms relieved, feeling in control, and feeling connected to and needed by family, friends, and health professionals (Aspinal et al., 2006; Johansson et al., 2006).

Empowering Families Family palliative and end-of-life care is a strengths- based approach. It is about building and nurturing family strengths to ensure that quality of life, as de- fined by the family, can be achieved as closely as pos- sible. Rather than solely focusing on deficits or areas that the nurse perceives as problematic, palliative care emphasizes empowering families to manage this challenging time in their own unique way by notic- ing and building on strengths, while at the same time effectively addressing problems. All of the empow- ering strategies require good communication skills. The focus should be on maximizing the patient’s and family’s capacity to use their own resources to meet their needs and respecting their ability to do so. Nurses empower patients and families by creating an environment in which their strengths and abilities are recognized, by encouraging them to consider various options, by assisting them in fulfilling their needs and desires through the provision of informa- tion and resources, and by supporting their choices. Several specific interventions that empower families are commending families, educating families about clinical options and constraints, and helping families to help themselves.

Family members appreciate recognition for their knowledge of the patient, their competencies, and their caring. Nurses can facilitate this appre- ciation by commending the work of the caregiver in the presence of the ill person. Commending families and family members is a very powerful in- tervention (Houger, Limacher, & Wright, 2003; Mok et al., 2002; Wright & Leahey, 2005), espe- cially in the presence of the ill person. Caregivers may be better able to cope with caregiving when

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the ill person recognizes and appreciates their role (Hunstad & Svindseth, 2011; Stajduhar et al., 2008). Effective commendations involve making specific observations of patterns of family strengths that occur across time (Wright & Leahey, 2005). Similarly, parents appreciate recognition of their parenting role and skills. Nurses’ commendations may help to strengthen parents’ relationships with their child and their view of their parental role (Antle et al., 2005; Hinds et al., 2009; Steele, 2002).

Empowering also is about making patients and families aware of options and constraints about clinical care and available resources so they can make choices that are most appropriate for them. For example, families may be unaware of the possibility of having death occur outside the hos- pital, yet that may be a support for some families (Pector, 2004b). Home death is often the pa- tient’s desire and, typically, family caregivers are deeply committed to doing whatever it takes to honor this preference (Robinson et al., 2012). Yet there is growing evidence that family care- givers are unprepared to take on the job of pro- viding care and they lack the necessary education and support along the journey (Robinson et al., 2012; Topf, Robinson, & Bottorff, 2013). Under these circumstances, family caregivers can suffer negative health consequences and are at risk for complicated bereavement (Topf et al., 2013). Engaging both the patient and involved family members in discussion about preferences for care, preferences for place of death, and available resources may assist negotiation of decisions that can be simply taken for granted when family members automatically step forward to take up the role of caregiver. Choice empowers families.

Strain on families may be reduced when families are more accepting of the patient’s illness, feel more capable in their ability to provide and man- age the patient’s end-of-life care (Redinbaugh, Baum, Tarbell, & Arnold, 2003), and feel better able to attend to their own self-care needs and dif- ficult emotions or interactions (Merluzzi, Philip, Vachon, & Heitzmann, 2011). Nurses need to as- sess families for their knowledge, skills, and con- cerns, and then offer appropriate interventions. Some interventions include providing information about the illness, its treatment and prognosis; teaching family members how to provide adequate care to their loved one; and encouraging family members to share their fears and other emotions, and then providing the needed support (e.g., in discussions, or referring to appropriate resources such as a social worker who can arrange for respite care). Facilitating hope for a longer life or for a peaceful death and providing adequate informa- tion and emotional and instrumental support also may help reduce the burden (Hunstad & Svindseth, 2011; Proot et al., 2003).

Empowering patients and families may include helping them to do what they themselves want and need to do, rather than professionals taking over and doing it for them. For example, although it may appear quicker and easier for the nurse to assist a patient out of bed, it may be important that the patient moves by herself or that a family member is taught to assist. Sometimes you will need to be creative in finding ways to empower patients and families. You might find that your abilities are stretched as you try to accommodate them, especially within the constraints of your clinical setting, so do not be afraid to talk with your clinical facilitator or other staff members about your struggles. They can be great resources for you. At the same time, you might have some innovative ideas to share that they will find useful in their practice.

It is important to assess the capacity of patients and families to do for themselves, and then find ways of supporting them when hopes and expec- tations exceed capacity. Careful assessment of the situation is central to knowing when to act on be- half of patients and families, and when to encour- age them to manage themselves, because if you “do for” patients and families when they can care for themselves, you may diminish their sense of competency and disempower them. On the other

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hand, if you expect them to do everything on their own, you may inadvertently leave them feel- ing isolated and unsupported (Stajduhar, Funk, Jakobsson, et al., 2010).

Providing Information Families often have a need for information, but may not know what questions to ask. A lack of knowl- edge and feeling uninformed can leave people feel- ing isolated, frustrated, and distressed (Andershed, 2006; Hunstad & Svindseth, 2011). Some families want a great deal of detailed information, whereas others feel overwhelmed and find that it interferes with their ability to live as normal a life as possible. Therefore, ongoing assessment of how much and what types of information families want is impor- tant (Maynard et al., 2005; Pector, 2004a; Steele, 2005a, 2005b). This assessment also needs to in- clude how much information should be offered directly to the patient, especially a child (Hays et al., 2006; Hsiao, Evan, & Zeltzer, 2007; Mack et al., 2005). A wide variation exists in the age at which parents believe a child is old enough to be included in illness discussions (Mack et al., 2005). Even when the patient is an adult, some families may believe that not all information should be shared with the patient (Royak Schaler et al., 2006). These beliefs may be based on cultural norms. As a nurse, you need to be aware of your legal responsibilities and ensure that you do not withhold information inap- propriately. You also must convey your responsibil- ities to the family and initiate an open dialogue about the importance of communication. As alluded to above, some families may hold a culturally based belief that an adult patient should not be told a life- limiting diagnosis. One way of approaching this is to ask the patient whether she wants information about her medical condition, and if not, who in the family should be given information, and whether this person should be considered her designate de- cision maker.

As a beginning family nurse, what information can you offer that may make a positive difference for family caregivers? You are in one of the best po- sitions to understand and appreciate what it is like for family members to take up the job of caregiv- ing. Most do not have a medical background and so they do not know what will be asked of them. They do not know how to provide basic care effec- tively, such as toileting, assisting the ill person to

move without causing more pain, and managing symptoms such as pain and breathlessness, or even safely working with an oxygen tank. They need knowledge and skills that they do not even know they need until they are alone in the midst of pro- viding care. Noticing what the ill family member needs, anticipating future needs, listening to both the ill person and the family caregiver, assisting them to negotiate how care will be done at home, working directly with the family caregiver to pro- vide knowledge and model essential skills, and de- termining available resources and gaps in services are some examples of interventions that may prove supportive. The key is listening carefully to both the ill person and the family caregiver and bringing your knowledge forward to support them in their mutual goals. At the same time, it is important to recognize and assist with strategies to maintain “normal” roles within a family, such as parent or spouse (Price, Jordan, Prior, & Parkes, 2011; Stajduhar, Funk, Jakobsson, et al., 2010; Weidner et al., 2011). Family caregivers have reported that interventions aimed at separating them from their dying family member, such as exhortations to leave the bedside and get some sleep, are often not helpful and can be experienced as disrespectful (Robinson et al., 2012). Family caregivers may see these inter- ventions as evidence that nurses really do not un- derstand their commitment to the dying person and to providing care. As previously mentioned, one intervention that is very powerful is the offer- ing of situation-specific commendations.

When patients and family members are empow- ered with the amount and kind of information they want, at the time they need it, the result is more ef- fective partnerships with professionals. Nurses are in a key position to act as a liaison between the profes- sional team members and the family. Patients and families should be encouraged to ask questions, and these questions should be answered with full expla- nations and support. There is some evidence that family caregivers may be reluctant to reveal difficul- ties providing care because they are afraid that care will be taken away from them (Topf et al., 2013). Therefore, nurses need to create an environment that allows family members to speak openly and without fear.

Beginning nurses are sometimes reluctant to in- vite questions from families because an expectation exists that you will have an answer. Simply knowing the questions is valuable information, and many

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times the questions do not have answers. As a novice, you may not know the answer, and that is all right. If possible, however, you can show your trustworthiness by seeking the information and providing it in a timely fashion.

Overall, families need to have honest and under- standable information about a variety of areas, in- cluding the following:

■ The patient’s condition ■ The illness trajectory ■ Prognosis (keeping in mind that prognosis is

inherently uncertain because we cannot pre- dict when death will occur)

■ Symptoms to expect and treatment options ■ How to provide physical care ■ What to expect (including signs of impend-

ing death, which allows family members the opportunity to say final good-byes)

■ Ways of coping (including helping families become aware of possible strategies, such as respite and mental pauses)

■ The dying process ■ How to access additional support ■ What aids (e.g., wheelchairs, beds, lifts) may

be helpful and where to get them ■ The care system in which this all occurs

Provision of this type of information is linked to reduced caregiver burden, improved coping, self- efficacy, and enhanced quality of life (Northouse et al., 2010).

The way in which information is shared is as im- portant as the content of the information. Critical components of the process of sharing information include timing, pacing, and both verbal and non- verbal conveyance of respect, empathy, and com- passion (Gutierrez, 2012; Kirk, Kirk, & Kristjanson, 2004). The timing and pacing, in particular, are im- portant to allow families to absorb the reality of the situation and to make informed decisions (Meert et al., 2007). Do not rush families to make decisions, and give information as early as possible to allow for ongoing discussions and decision making with a clearer mind rather than waiting for a crisis that may be fraught with emotion (Hammes et al., 2005; Macdonald, Liben, & Cohen, 2006; Sharman et al., 2005). The use of simple, jargon-free language is likely to be helpful. In emotionally intense situa- tions, often little information is absorbed and it must be repeated over time, so nurses should be

willing to clarify repeatedly for family members without becoming impatient and ask questions of all family members to ensure that information is being understood. Nurses also need to attend to their own and family members’ nonverbal language; at least three-quarters of a message is conveyed nonverbally. For instance, watch the person’s face to determine if she looks confused, upset, or com- prehending. Moreover, be aware of your own body language; stand close to a family member rather than standing in the doorway of a patient’s room so you give the impression of having time to talk and listen. Moderate your tone of voice so that you sound respectful and empathetic rather than an- noyed or without compassion.

Through learning about other families’ experi- ences, patients and family members can better un- derstand their own experience. Nurses can share insights gained from other families both from practice and research. For example, “Other fami- lies have told me that talking about what their child’s death might be like was one of the hardest things they ever had to do, but once they knew there was a plan in place for how to handle the possible symptoms or issues that may happen, they were able to stop worrying about all the ‘what-ifs’ and just focus on having the best time possible with their child.” Having information en- ables patients and family members to collaborate with health care providers from an informed po- sition and is required for making decisions and planning for the future.

Balancing Hope and Preparation A fair amount of ambiguity always exists when working with families at end of life, regardless of whether the situation is acute or chronic. Nurses need to become comfortable with the inherent un- certainty and help families live well within an un- certain context. One common ambiguity surrounds prognostic uncertainty. Given that we cannot pre- dict when death will occur, families need to be en- couraged to attend to what they view as important and to take advantage of the moment. When a pa- tient or family member asks, “How long?” you might reply by asking, “What would you be doing differently now if you knew that the time was very short?” In response to their answer, you might sug- gest that they do whatever “it” is, and if they get to

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do “it” again next week or next month or even next year, then that would be a bonus.

As a patient’s condition changes and deterio- rates, the hopes and expectations of the patient and family may change as well. Hope often shifts from a more global perspective—such as hope for a cure—to a more focused or specific perspective, such as a hope to live long enough to see her grand- child who is due in a few months. Nurses can help facilitate this change in hope by asking powerful questions, such as, “If your loved one were to die tonight, is there anything you have not said or done that you would regret?” or “If you were to die sud- denly, is there anything you would regret not doing or saying?” Such questions encourage patients and families to consider what is most meaningful to them and allow them to shift their hope to areas that may be more attainable. Nurses who partici- pate in these discussions can help maintain hope for some things while not providing false hope. They also can offer to help patients and families do or say what they need to do.

For some families and in some cultures, a need is present to keep fighting for every chance at life, hoping for a miracle, until the last possible mo- ment, even when they may know this is considered medically unrealistic (Kirk et al., 2004; Robinson, 2012; Shiozaki et al., 2005; Torke et al., 2005). As a nurse, it is important to find the balance between supporting families in their hopes and still being comfortable talking about death and preparing the patient and family for what is to come, including advance care planning (Hsiao et al., 2007; Rini & Loriz, 2007; Robinson, 2012; Robinson et al., 2006; Shiozaki et al., 2005; Steele, 2005a). There- fore, when preparing the family for what is to come, the information must be provided in a sen- sitive manner that acknowledges hope (Kirk et al., 2004; Robinson, 2012; Shiozaki et al., 2005). One way of doing this is to use a hypothetical question (Wright & Leahey, 2005), such as, “If things don’t go as we hope, what is most important for you to have happen?” Another phrase that is sometimes helpful is suggesting that a family “hope for the best and plan for the worst.”

Parents of dying children identify a need to balance hope and despair (Konrad, 2008; Moro et al., 2011) and appreciate when health profes- sionals support hope without offering false hopes (Gordon et al., 2009; Monterosso & Kristjanson,

2008). Lack of discussions about the possibility of death are closely linked to parents’ belief that health professionals sometimes give false hope that the child will survive the illness (Gordon et al., 2009; Monterosso & Kristjanson, 2008). False hope may be detrimental to parents’ ability to prepare for the child’s death, so nurses need to be mindful of what they say and how they say it. Honest acknowledgment of the severity of the situation is important.

Facilitating Choices A major role for nurses is to be an advocate for pa- tients and families and facilitate their choices. But to do so, nurses need to know what the patient and family want. One specific intervention is to encour- age advance care planning so that everyone is clear about the patient’s preferences regarding end-of- life care. Other interventions include assessing the extent of both the patient’s and family members’ desire for involvement in decision making, and then respecting that desire; assessing their aware- ness about the possibility of death, and opening lines of communication; and identifying and then building on the patient’s and family’s strengths in order to optimize choices.

Advance Care Planning At the end of life, patients may be unable to partici- pate in making decisions about their care, leaving family members to make decisions based on their understanding of what the patient would want if he were able to participate. One way in which families can prevent misunderstandings and can promote fa- cilitation of choices is by discussing wishes and de- sires in advance. Advance care planning is a process that involves reflection and communication. It is a way of letting others know your future health and personal care preferences, so that if you become incapable of consenting to or refusing treatment, others—especially your substitute decision maker, the person who will speak for you when you cannot—will make decisions for you that reflect your values and wishes, regardless of their own de- sires. Advance care planning often involves not only discussions with family and friends, but also writing down your wishes; it may even involve talking with health care providers and financial and legal profes- sionals. The Canadian Hospice Palliative Care

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Association (n.d.), in collaboration with the National Advance Care Planning Task Group, provides a number of valuable online resources about advance care planning, including a workbook to guide writ- ing the plan.

Less than 30% of adults have an advance direc- tive, and even for those adults who do have them, they may not be available when needed or be spe- cific enough (Dunn, Tolle, Moss, & Black, 2007). If someone has written advance directives, his or her substitute decision maker should also have a copy. It is important that health care providers are made aware of a patient’s advance directives and, preferably, a copy kept with the patient’s chart. Nurses need to make themselves familiar with such advance directives so they can advocate for the pa- tient as needed when decisions are being made.

Advance care planning is a process that is best initiated early in the illness experience and revisited as the illness progresses because preferences can change over time (Robinson, 2011, 2012). These types of conversations are difficult to have among family members, and families may appreciate assis- tance to initiate and facilitate the conversation. Nurses can facilitate the process and empower both patients and families by encouraging them to talk about end-of-life issues and preferences long before they are faced with the situation and by initiating discussions about substitute decision making, in- cluding the legalities of representation. The process of substitute decision making can be a very demand- ing one for families (Meeker, 2004), and written ad- vance directives can be helpful to family members (Robinson, 2011, 2012), particularly in reminding them of their loved one’s wishes when there may be differences in what each thought would be best. In addition, when faced with actually making deci- sions, family members often appreciate acknowl- edgment of the difficulty of their role, and the nurse’s attentive, respectful support throughout the process will be very helpful (Meeker, 2004).

Involvement in Decision Making Families may be facing their first experience with death and dying, and they often depend on nurses to help them in their process. Families may not know what they need or what might be possible (Selman et al., 2007); they may expect health pro- fessionals to bring up issues when appropriate— that is, the family members may feel it is not their place to raise issues first (Robinson, 2011), so

nurses need to open the conversation. It is impor- tant first to assess and then respect the patient’s and family’s desired level of involvement in discussions about end of life and in decision making. Nurses should ask questions such as, “How are important decisions made in your family?” and “How would you like important decision making to go now?” so they understand the family’s approach and can facilitate appropriate interactions that respect family choice.

Some patients and families may want full re- sponsibility for decisions; some may want to be in- volved but not make final decisions; some may want the physician to take the initiative and make all de- cisions (Selman et al., 2007; Shiozaki et al., 2005); and some patients want their family members to make decisions (Torke et al., 2005). Some parents feel that making decisions for the child is inher- ently a parental role, but not all want to have com- plete responsibility for final decisions (Brosig, Pierucci, Kupst, & Leuthner, 2007; Contro et al., 2002, 2004; Hays et al., 2006; Meyer et al., 2006; Pector, 2004b; Sharman et al., 2005). Again, assess- ment of preferences about decision making is im- portant. Nurses can use questions such as, “I understand that different family members will have different talents or strengths; how do you most want to be involved?” to uncover family members’ preferences so they can work with the family in ways that facilitate choice.

Regardless of their actual role in the decision- making process, parents want to be recognized as the experts on their child and as the central, con- sistent figures in their child’s life. As such, they want health professionals to seek out and respect their knowledge, opinions, observations, and con- cerns about their child (Kars, Grypdonck, & van Delden, 2011; Hsiao et al., 2007; Meyer et al., 2006; Steele, 2002, 2005a; Weidner et al., 2011; Widger & Picot, 2008; Woodgate, 2006). There- fore, nurses should verbally acknowledge that the parent’s input is critical and they should be mindful of paying attention to facilitating the parent’s choices, regardless of their own beliefs.

The involvement of family members in decision making can have a lifelong effect on the well-being of family members (Christakis & Iwashyna, 2003; Kreicbergs et al., 2005; Surkan et al., 2006). Nurses, therefore, must foster good communication to ensure that the patient’s and family’s needs and wishes are understood and supported within a caring

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relationship that is built on partnership between pro- fessionals and families (Robinson, 2011). Many times health care providers block families from participat- ing because they feel they know what is best or be- cause they are trying to protect families. But effective end-of-life care is not possible unless open and mu- tual communication occurs between families and professionals, and families participate in shared de- cision making to the extent they desire (Robinson, 2011). Questions such as, “If you were to think ahead a bit, how do you see things going in the next few weeks?” and “Families often find it helpful to talk about the care they want at end of life. Have you been able to have a conversation about this? I wonder if I might be able to help you start this conversation,” can be used to learn what a patient and family want. See Box 10-4 for other questions that may help nurses become cognizant of a family’s choices.

Awareness of Possibility of Death Lack of early information about the possibility of death makes it difficult for family members to come to terms with decisions such as the withdrawal of life-sustaining therapy or the use of cardiopul- monary resuscitation (Heyland, Frank, et al., 2006). Families faced with these types of decisions usually place great value on open, honest, and timely in- formation, but they also need to be listened to in terms of their intimate knowledge of the patient rather than just spoken to (Hunstad & Svindseth, 2011; McDonagh et al., 2004). Moreover, it is cru- cial to prepare the family for what to expect when life-sustaining therapy is withdrawn. For example, families need to be aware that death may occur very quickly, or may take hours or days (Wiegand, 2006). When decisions are made, such as with- drawal of life-sustaining therapy, any delays past the agreed-on time for implementing the decision may greatly increase the family’s anxiety (Wiegand, 2006). Therefore, it is important for nurses to keep the family informed about the reasons for any changes to the plan and to be available to talk with family members when needed.

Building on Strengths Nurses need to recognize the dying person’s and family members’ rights and abilities to make their own decisions and then make an effort to find out what is important to them. It is important to focus on what patients and families can do, rather than on what they cannot do. As a nurse, you can reinforce

those aspects of the self that remain intact, and assist patients and families to recognize their own strengths and abilities. Once you identify and build on individual and family strengths, you can smooth the way for patients and families to meet their own needs. Nurses can work with patients and families by making suggestions, providing options, and plan- ning strategies that will allow them to achieve their goals. Your professional knowledge may be invalu- able in guiding families to consider options and pos- sible routes of actions that they would not have thought of without your input, for example, the use of special equipment that allows a patient to have the bath that he thought was not possible because of his weakness. Furthermore, you may have a clearer sense of the consequences of certain choices, which again is extremely valuable information. At the very least, you can seek out answers to families’ questions and be a resource for families.

Facilitating choices also means identifying and accepting a patient’s and family’s limitations, and finding ways to work with them so they achieve an outcome that is both positive and satisfactory to them. For example, you can suggest new activities that are appropriate for the patient’s current capa- bilities. It is important that relationships remain mutual and reciprocal, and patients in particular need to experience their positive contribution to their family members. Thus, as patients get sicker, their contribution will look different and may focus on such things as words of wisdom rather than con- crete actions.

Offering Resources One nurse cannot be all things to every patient and family. It is important to be aware of other team members, such as spiritual or pastoral care providers (Wall, Engelberg, Gries, Glavan, & Curtis, 2007), social workers, and others who may be available to provide support to the family. Furthermore, the nurse should be knowledgeable about hospital- and community-based services, such as hospice, that may be available to support families both before and after the death (Casarett, Crowley, Stevenson, Xie, & Teno, 2005). You can offer these other resources and services to families, but each family will decide what will actually be helpful for them. For some families, using inpatient respite services during the last year of life may help relieve their burden, if only for a short time, whereas other caregivers may

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experience feelings of guilt and increased stress caused by worrying about the quality of care pro- vided during respite (Skilbeck et al., 2005). Care- givers may be supported in their role simply by knowing there are other resources and support readily available, even if they do not make use of them (Stajduhar et al., 2008).

Encouraging Patients and Families Patients and family members often seek approval and encouragement from professionals as they make decisions about how to meet their needs. Encouraging is an important strategy in empow- ering patients and families to do for themselves. It means verbally and nonverbally supporting patients and families in their choices, providing reinforcement for each individual’s ideas, and demonstrating your support by finding ways to facilitate their choices. Encouraging does not nec- essarily mean that you agree with the choice, merely that you support the patient or family member in finding ways to enact the choice. At the same time, encouraging does not mean you abandon your expertise, which is complementary to the expertise of the family. Sharing your knowl- edge and perspective contributes to fully informed decision making.

It can sometimes be too easy to think that you know what is “best” for patients and their families. As a caring professional, you have their best inter- ests at heart and you want to protect them as much as possible. Even as you value each person as a worthwhile individual who has the right and ability to make his or her own choices and deci- sions, you may find that the patient’s and family’s desires conflict with what you believe is “best” based on your professional experience and knowl- edge. Times such as these can cause you moral distress as you struggle with supporting the pa- tient and family, while remaining “true” to the knowledge you have. Your negotiation skills may be severely tested in such situations, and some- times you will be tempted to override a patient’s wishes. Some nurses describe their bottom line as “ensuring patient safety,” and unless the patient’s physical safety is compromised they will support the patient’s choice, even when they disagree with it. Encouraging supports families to figure out ways to do what is important for them in the best way possible.

Managing Negative Feelings End-of-life care is not all encouragement and pos- itive feelings. Many patients and family members also have negative feelings that influence their ex- periences. Talking with patients and family mem- bers (often individually) about those negative feelings gives them permission to have, experience, and deal with them. For many people, negative feel- ings, such as guilt or anger, are suppressed or inter- nalized. Others openly express their anger but displace it onto someone else, often the nurse or other family members. The ability to diffuse a situ- ation effectively requires nurses to learn how to ac- cept someone else’s negative feelings in an open and nondefensive manner. It means not taking their words as a personal attack, but realizing that pa- tients and family members simply need a safe outlet for their frustrations and negative feelings. Your role is to listen in an accepting way and allow them to ventilate. It can be hard to face an angry tirade, but most people will calm down once they have said what they need to say and they realize that you value their feelings even if they are negative ones. Ques- tions that are often useful include “How can I help?” or “What needs to be different?”

Sometimes, however, people will remain angry or guilty despite your best efforts. Diffusing will not al- ways be as successful as you would like. Some people are so angry about what is happening to their loved one and their family that they cannot move to any other emotional state. You will need to accept that this is their reality and find ways to work with them. This is often a time when nurses need the support of colleagues, and a team approach may help to lessen the effects of working with these patients and families (Namasivayam, Orb, & O’Connor, 2005). Other interventions that may be helpful include re- ferral to resources such as social work, pastoral care, psychology, and support groups.

Facilitating Healing Between Family Members Negative feelings and misunderstandings can cause or expand rifts in families. If a nurse can facilitate healing between family members that unifies the family, the family can function better as a team and members are better equipped to move through the dying process. You can help mend relationships by interpreting family members’ behaviors to one

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another and helping them to see each other’s point of view. Sometimes an outsider can bring clarity to a situation that is impossible for those members who are enmeshed in it. An assessment question that may be useful is this: “Is there anything that is unsaid or undone in the family that needs your attention?” Be careful, though, that you do not try to “fix broken families.” Many families that you might think are dysfunctional do not see themselves as having diffi- culties or needing to change. They will not invite you to fix them and, indeed, may find your concern about the family intrusive. Furthermore, relationships de- velop over many years and your interventions will occur in a relatively short period. Do not expect a huge change in family dynamics during the time you know a family, unless the family wants to change and makes an effort to do so. Sometimes all you can do is acknowledge to yourself that certain things cannot be fixed and your presence is all you have to offer. Levels of family functioning will need to be attended to carefully as you work with a family, and the expec- tation that a family will pull together to cope with the process of dying may be unrealistic. Noticing the family members’ love for the ill member and ac- knowledging their mutual desire for the best for their ill member (even though there may be quite different ideas about what is best) is sometimes helpful.

Family Meetings Family meetings typically involve the patient, those family members desired by the patient, and the relevant health professionals (Hudson, Quinn, O’Hanlon, & Aranda, 2008). They should rou- tinely be offered on admission to a setting and fur- ther meetings may be called by the patient/family or health care professional on an “as needed” basis. Family meetings should be considered a proactive approach and not be held in reserve only for “crisis” situations. Family meetings are bene- ficial to facilitate consistency in everyone’s under- standing of the situation and the expected course for the illness (Hudson et al., 2008; Wiegand, 2006), as well as for negotiation of care. They en- able patients, family members, and professionals to meet together to discuss any issue, but they are not family therapy (Fineberg, 2005, 2010).

Nurses are ideal partners to lead these end-of- life family conferences. In all settings, you can assist families in preparing for the meetings by helping them to write down questions that they want to

raise at the meeting, informing the family about what to expect during the conference, and dis- cussing what the patient values in life, the patient’s and the family members’ spiritual and religious needs, and what the patient may want if she is un- able to participate in the conference (Curtis et al., 2001). It is helpful to begin by eliciting the family’s understanding of the situation, as well as pressing concerns, before moving to the health professionals’ perspectives. Different family members and profes- sionals will have different ideas, so it is useful to re- quest different perspectives. Afterward, you can talk with the family about how the conference went, what the changes in the patient’s plan of care are and what they mean, and how the family feels about the conference and changed plan of care (Curtis et al., 2001; Hudson et al., 2008). You also should talk with the family about the decisions that were made and then support them in these decisions.

More than one family meeting may be necessary as the patient’s condition changes or if the family needs time to think or further discuss issues before decisions are made (Hudson et al., 2008; Wiegand, 2006). The proportion of time the family spends talking during these conferences is more important than the total length of the conference in increasing family satisfaction and decreasing conflict between families and health professionals (McDonagh et al., 2004). Yet, on average, typical family conferences involve the health professional speaking for 70% of the time and listening for only 30% of the time (McDonagh et al., 2004). It is important that you pay careful attention to ensure that families do the majority of talking during family meetings. In ad- dition, be mindful of your nonverbal communi- cation, because it is often our main method of communication, and is particularly powerful when the topics are emotional. For example, wrapping your arms around yourself may indicate anxiety; in- terrupting may be a sign of impatience.

Finding Meaning When recovery is impossible, nurses must consider their role in helping patients and families find meaning in the experience as they care for and as- sist families. Patients and families often struggle to understand why the patient is dying. They try to make sense of the experience, and they search for ways to make the patient’s life and inevitable death meaningful. Their search for meaning may involve

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examining relationships within the family or with a higher power (Hexem, Mollen, Carroll, Lanctot, & Feudtner, 2011). Some people will be more suc- cessful at finding meaning than others or the process may not occur until long after the death (Widger et al., 2009).

As a nurse, you can assist in this process of find- ing meaning by truly listening and hearing what family members have to say. Engaging in relation- ship and dialogue will be empowering and can help families create meaning even in a difficult situation (Abma, 2005). But there are many different ways of finding meaning, and not all individuals will overtly search for meaning. As a nurse, you will accompany people as they try to make sense of their situation. You cannot find meaning for someone else, how- ever (Robinson et al., 2006). Each individual will seek his own meaning in his own unique way. Some may be very articulate about their philosophical and spiritual beliefs and how they influence mean- ing making (Hexem et al., 2011; Knapp et al., 2011). Others may talk about these issues in more concrete terms, perhaps rarely having articulated their thoughts and feelings. Still others may “talk” through their actions. Finding meaning gives strength to people, and therefore, you will find that it is empowering for families. Nurses who examine the concepts of meaning of illness and dying with patients may gain a deepened understanding of the patients’ experiences, which may lead to changes and improvements in the way care is provided (Gauthier, 2002). You might begin this examina- tion by asking the patient: “Can you tell me what it is like to be at this point in your life?”

Care at the Time of Actively Dying Patients who are dying are often most concerned about how they will die rather than that they are dying (Kuhl, 2002). Excellent pain and symptom management is critical as uncontrolled pain or symp- toms such as nausea and breathlessness create suffer- ing for all family members. A “good death” may contribute to family members feeling more at peace with the death (Mok et al., 2002), and also having a sense of satisfaction and accomplishment (Perreault et al., 2004). Parents often believe that their child’s peaceful death means that they made the right choices and that they did all that they could for their child (Hinds et al., 2000). Thus, facilitating a good death is an imperative for nurses. What constitutes a

good death, however, is not well understood. From observations of patients, family members, and health care providers, six major components of a good death have been identified: pain and symptom manage- ment, clear decision making, preparation for death, completion, contributing to others, and affirmation of the whole person (Steinhauser et al., 2000). A bad death has been defined by a “lack of opportunity to plan ahead, arrange personal affairs, decrease family burden, or say good-bye” (Steinhauser et al., 2000, p. 829).

In the context of a palliative care approach, the language of care, quality of life, relief of suffering, and the principles of palliative care become impor- tant in helping families attain a “good death.” When a cure is not possible, families often react to the news with a blanket statement: “We want everything done.” But that may not be what they mean literally. Families may just believe that if they agree to palliative care, treatment will be withheld, and they will be abandoned because death is the ex- pected outcome (Gillis, 2008). Delaying palliative care compromises the ability to achieve a good death. Clear discussions are needed about the con- tinued provision of active care with a shift in em- phasis to quality of life instead of prolongation of life. Such discussions will reassure families that, in- deed, everything is being done and they are not being abandoned.

No matter the setting, family members are often afraid of the actual death event and have little or no understanding of what dying entails. You will find that sometimes the greatest gift you can give families as they prepare for the death is helping them release the dying person, to forgive them- selves and their loved one so she can die in peace (Cooke, 1992). Nurses can help alleviate families’ fears by finding out what they know and what they need. You can then prepare families for the death and help them recognize the signs of imminent death so they are aware of what will likely happen when the signs appear (see Box 10-6). This prepa- ration may be even more crucial for families in the home, who may be alone at the time. It also is im- portant in the intensive care unit (ICU) and emer- gency department to tailor your information to the situation. For example, a patient’s breathing will not change if he is on a ventilator.

Generally, an illness begins to weaken the body when a person is nearing death. Some health con- ditions affect vital body systems, such as the brain

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and nervous system, lungs, heart and blood vessels, or the digestive system, including the liver and bowels. As illnesses progress, the body becomes un- able to use the nutrients in food, resulting in weight loss and a decline in appetite, energy, and strength. More time is spent resting, and in the final few days before death, people usually sleep most of the time. If families are aware of this natural progression, they may be less distressed, for example, when their loved one stops eating. One sign of imminent death, terminal restlessness, can be distressing for family members to watch (Brajtman, 2005). Sedation at the end of life may be necessary to con- trol severe symptoms such as terminal restlessness. Box 10-6 lists signs of imminent death that should be shared with families.

Communication and relationships continue to be important as death approaches (Munn & Zimmerman, 2006). Nurses can encourage family members to continue talking to their loved ones even if they are nonresponsive, because they may still be able to hear (Brajtman, 2005). You can model this type of interaction by continuing to speak to the patient and treating him with dignity throughout the dying process. You can demon- strate respect for the family and its intimate knowl- edge of the patient by seeking its advice on things that were soothing or calming to the patient in the past, such as particular music, foot rubs and back rubs, or a particular way of arranging the pillows, and then following these suggestions or encourag- ing the family to do so (Brajtman, 2005).

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BOX 10-6 Signs of Imminent Death

Decline in physical capabilities Decreased alertness and social interaction Decreased intake of food and fluids Difficulty swallowing medications, food, and fluids Visual and auditory hallucinations Confusion, restlessness, agitation Physical changes as death nears include the following: ■ Circulation gradually shuts down; hands and feet feel

cool, and a patchy, purplish color called mottling appears on the skin; heart speeds up, but also weakens, so pulse is rapid but hard to feel.

■ Bowel movements and urine production decrease as less food and fluid are taken in; may be no urine out- put in last day or two of life; constipation is not usu- ally an issue to be managed in the last week of life; loss of bladder or bowel control can be managed with frequent skin care and the use of adult inconti- nence products, or even a urinary catheter if needed.

Changes in breathing often provide clues about how close someone is to death. As the automatic centers in the brain take over the regulation of breathing, changes generally occur in the following ways:

■ The rate of breathing tends to be more rapid. ■ The pattern or regularity in breathing becomes

irregular, almost mechanical. ■ How deep the breaths are (may be shallow, deep, or

normal) tends to become more shallow. There may be periods of apnea where breathing pauses for a while. When the pauses in breathing appear, a no- ticeable pattern often develops: clusters of fairly rapid breathing that start with shallow breaths that become

deeper and deeper, and then fade off, becoming shallower and shallower; may be 5 to 10 breaths in each cluster, and each cluster is separated by a pause that may last a few seconds or perhaps up to 30 seconds; called the Cheyne-Stokes pattern of breathing and is occasionally seen in healthy elderly people as well, especially during sleep.

■ The kinds of muscles used in breathing may change; the person may start to use the neck muscles and the shoulders, but though it may look as if the per- son is struggling, unless he or she is agitated it is simply “automatic pilot.”

■ The amount of mucus or secretions that build up be- cause the person is unable to cough can be noisy (rattling or gurgling) and sometimes upsets people at the bedside even though it is unlikely to be dis- tressing to the dying person, who is usually uncon- scious; some people call it the “death rattle,” and it can be treated by medication to dry up the secre- tions. Because the term death rattle may cause strong emotional reactions, the term respiratory congestion is now recommended.

■ The pattern of breathing in the final minutes or per- haps hours of life: the breathing takes on an irregular pattern in which there is a breath, then a pause, then another breath or two, then another pause, and so forth. There may be periods of 15 to 30 seconds or so between final breaths.

■ After the last breath very slight motions of breathing may happen irregularly for a few minutes. These are reflex actions and are not signs of distress.

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Many family members want to be present when their loved one is imminently dying; it is often important that they have an opportunity to say good-bye (Andershed, 2006). Thus, you need to be aware ahead of time about a family’s wishes and ensure that members are called if there is a change in the patient’s condition so they can be present, if possible, at the time of death if that is what they want. The days, hours, and minutes leading up to a child’s death are often seen by parents as their last opportunity to be a “good parent” to the child. Their ability to be physically present, emotionally supportive, and an effective advocate for their child is often key to viewing themselves as good parents in the years after their child’s death (Meert et al., 2005; Rini & Loriz, 2007; Sharman et al., 2005; Woodgate, 2006). “Normal” parent activities such as bathing, feed- ing, or holding the child, even in the midst of technology that is being used to support the child’s life, allow parents to develop or continue their bond with their child and sometimes to be able to say good-bye to their child (Brosig et al., 2007; Meert et al., 2005; Meyer et al., 2006; Pector, 2004a, 2004b; Rini & Loriz, 2007; Robinson et al., 2006; Sharman et al., 2005; Steele, Davies, Collins, & Cook, 2005). As a nurse, therefore, you need to facilitate parents’ wishes at this time and provide an environment that allows for parents to fulfill their parental role.

We cannot know when a patient will die, and despite our best efforts, sometimes this happens when family members are not present. Sometimes the patient dies when the family member has nod- ded off to sleep or stepped out of the room for a cup of tea. When family members wish to be pres- ent, it is important to talk about the possibility that this may not happen.

Bereavement Care Once the patient dies, the work of the nurse does not end (O’Connor, Peters, Lee, & Webster, 2005). A lot of family members may be present for the death, all of whom may need support, advice, information, and time to begin the grieving and healing process. Family members may wish to stay by the bedside and say whatever words seem ap- propriate. For some cultures, rituals may need to be conducted (O’Connor et al., 2005). Some fam- ilies may want active involvement in caring for the

patient’s body or at least to know the body will be cared for in a respectful manner (Pector, 2004a; Widger & Picot, 2008). There is no harm in touching the person’s body, and there should be no rush to move the person until everyone has had a chance to say their final good-byes.

Family members who were not present for the death may need to be contacted and may wish to see the patient before she is taken to the morgue or a funeral home. As a nurse, you can encourage the family to be together if it wishes and to take as much time as needed after the death. Your pres- ence as family members express their emotions may help them to create meaningful final memo- ries and begin to process their experience (Hannan & Gibson, 2005; Meert et al., 2005; Pector, 2004a; Rini & Loriz, 2007; Steele et al., 2005; Wisten & Zingmark, 2007). You may need to contact pas- toral care or other professionals to assist in sup- porting the family. Some families will appreciate your assistance with or information on arranging funerals (de Jong-Berg & Kane, 2006; Pector, 2004a; Rini & Loriz, 2007).

Particularly when the patient who has died is a child, families may appreciate you giving them a collection of mementos such as pictures, locks of hair, and handprints or footprints (de Jong-Berg & Kane, 2006; Meert et al., 2005; Pector, 2004b; Rini & Loriz, 2007; Tan, Docherty, Barfield, & Brandon, 2012; Widger & Picot, 2008). Some families later regret not taking mementos (de Jong- Berg & Kane, 2006), but others may be distressed if you take mementos, especially pictures, against their wishes (Skene, 1998); therefore, determining what each family wants and needs requires sensi- tivity and a careful approach.

In some cases, autopsy and organ or tissue do- nation may be possible. Nurses and other health professionals sometimes view such discussions as an intrusion and, thus, because of their own dis- comfort, they do not approach families. Parents in particular may have lingering regrets, however, if they miss an opportunity to help another child or to receive answers to some questions about their own child’s death (Macdonald et al., 2006; Widger & Picot, 2008). Therefore, you should not be afraid to initiate these conversations should they be indicated, or at least ensure that someone initiates them. It is also important to make sure that when autopsies are done, families are given the results in a timely and compassionate manner

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(Macdonald et al., 2006; Meert et al., 2007; Rini & Loriz, 2007; Wisten & Zingmark, 2007). Fam- ilies may want to meet with health professionals to discuss autopsy results, clarify the events lead- ing to and the circumstances of the death, and be reassured that everything possible was done and the right decisions were made (Kreicbergs et al., 2005; Macdonald et al., 2006; Milberg, Olsson, Jakobsson, Olsson, & Friedrichsen, 2008; Pector, 2004a; Wisten & Zingmark, 2007; Woodgate, 2006).

It was previously thought that healing meant a person got over their loss and severed ties with the deceased. It is now known that one does not “get over” the loss of a loved one; rather, families will forever have links with the person who has died (Moules, Simonson, Fleiszer, Prins, & Glasgow, 2007). The ways in which continuing bonds exist for different types of loss and their as- sociations with positive and negative outcomes for bereaved individuals is only beginning to be explored (Foster et al., 2011). As a nurse, you can do much to facilitate a healthy start to their griev- ing journey and to help them find meaning in death. Your actions at the actual death event are critical. Family members vividly remember the moment of their loved one’s death. They often remember who was present, what was said, what was done that was helpful, and what was not so helpful. Many remember that it was the nurse who was with them at the moment of death, or that the nurse was the first to respond to the fam- ily’s call about a change in their loved one’s con- dition. More often than not, families clearly recall the nurse’s words and actions. What you do for and with family members at the time of their loved one’s death can have a profound and long- lasting impact on them. It is important to remem- ber that, although the death may be one of many for the nurse, it may be the first and only for the family; therefore, a person’s death should never be treated as “just a job” on the part of the nurse (Shiozaki et al., 2005). Be cognizant too that clichés such as “this was meant to be,” “he is in a better place,” or referring to the deceased person as an angel may make families feel that you are minimizing the impact of the death on the family (Pector, 2004a, 2004b). Simple expressions, such as “I am sorry your husband is dying” (Tilden, Tolle, Garland, & Nelson, 1995, p. 637), are more often appreciated.

Nurses should have an understanding of loss, know how to support families in grief, and be able to provide quality bereavement care. Beginning nurses often worry about showing emotion, such as crying, in the presence of family members. Fam- ily members are often deeply touched when they see a nurse’s genuine emotional response, but it is critical that the family not be put in the position of caring for the nurse.

Provision of bereavement care by the nurse of- fers the opportunity for continued contact with the family and signifies the importance of the family to the nurse (Collins-Tracey et al., 2009; Davies et al., 2007; de Cinque et al., 2006; de Jong-Berg & Kane, 2006; Kreicbergs et al., 2005; Macdonald et al., 2005; Meert et al., 2007; Rodger, Sherwood, O’- Connor, & Leslie, 2007). Follow-up activities that many families appreciate include calls, cards, atten- dance at the funeral, and offers to make referrals to additional sources of support as needed (Cherlin et al., 2004). Families may appreciate written infor- mation on practical issues, such as what to do next, and about grief or other sources of support (D’Agostino et al., 2008; de Cinque et al., 2006; de Jong-Berg & Kane, 2006; Pector, 2004a; Rini & Loriz, 2007; Rodger et al., 2007), as well as infor- mation to share with extended family and friends on how to offer effective support. Depending on the setting, bereavement care may continue for a period of time in the community. Sometimes health care professionals call or send a card to fam- ilies on the first anniversary of the patient’s death, especially if it was a child who died. This simple contact acknowledges that the grieving process takes time and can make families feel really cared for, once again highlighting the importance of the patient and family to the professional (Collins- Tracey et al., 2009).

Special Situations There are some situations that can be challenging for nurses to consider and deserve additional atten- tion. More specific assessment and intervention tools may be required in order to offer optimal care.

Facilitating Connections for Children When a Family Member Is Critically Ill When a family member is critically ill, families and professionals may have a concern about the impor- tance and impact of bringing children to visit,

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whether at home, in the ICU, or in any other set- ting. Yet, these visits may reduce feelings of sepa- ration, guilt, abandonment, fear, loneliness, and worry for the child (Nolbris & Hellstrom, 2005; Vint, 2005). Children can generally decide for themselves if they wish to visit and, where possible, families and health care professionals should re- spect their decision. Those younger than 10 visit- ing a relative may be most interested in the equipment, whereas older children may spend more time focused on the person they are visiting (Knutsson & Bergbom, 2007). The visit can also benefit the patient by acting as a diversion, offering hope, and bringing a sense of normalcy (Vint, 2005). Thus, nurses should offer families the op- tion of bringing children in to visit loved ones.

Talking with the patient and family about previ- ous experiences with children visiting can be helpful, for example, “Sometimes family members are afraid that a child will be very upset to see grandpa looking so sick. Are you worried about that possibility?” and “In my experience, children are very curious, as well as resilient. They often suspect that something bad is happening and they imagine terrible scenarios. Being truthful and also letting them see for them- selves what is happening can be very beneficial.” You can assist families to prepare children beforehand about what they will see and what to expect; you also can be present during the visit to support family members in answering questions and to make the child feel welcome and an important part of the family (Knutsson & Bergbom, 2007; Nolbris & Hellstrom, 2005; Vint, 2005). It is important that everyone realizes a child’s reactions are somewhat unpredictable; one child may seem unaffected while another may be upset and crying. Nurses should ac- knowledge that every reaction is “normal” and work with the child in a way that meets his needs at the time. Though it may be difficult for a critically ill patient when a child chooses not to visit, you can help the patient understand by sharing your knowl- edge about how children need to make their own decisions and you can offer ways to assist in main- taining connections between the child and the ill family member through cards, calls, and frequent updates about how the patient is doing.

When Death Is Sudden or Traumatic Unlike with chronic illness, a sudden or traumatic death leaves little time for families to come to terms

with the situation. Further, the nature of a fre- quently chaotic environment when death is trau- matic or sudden may contribute to a lack of communication between professionals and families. It is important that the information given to fami- lies include the big picture; otherwise, families often receive different pieces of information from each health professional and may have trouble put- ting it all together to understand that it actually means the patient is dying. This may be more of an issue in situations when there is a sudden illness or injury because the family has little experience and may be unprepared for what is happening (Meert, Thurston, & Briller, 2005; Rini & Loriz, 2007; Wiegand, 2006).

In critical care areas, nurses may be less apt to support patients and their families emotionally and psychologically (Nordgren & Olsson, 2004; Price, 2004) because they give more attention to manag- ing the patient’s physical symptoms systematically and efficiently. Family members may not be at- tended to as nurses deal with the acuity of evolving situations. Yet, research shows that family members of patients in ICUs often experience anxiety and depression (Pochard et al., 2001). Furthermore, in- sufficient information and death in the ICU have been associated with posttraumatic stress disorder in families of ICU patients (Azoulay et al., 2005). Therefore, it is necessary to offer psychological support, such as ongoing assessment of and infor- mation for families of patients who are cared for and who may ultimately die in ICUs (White & Luce, 2004).

Whether during a sudden or traumatic event that necessitates admission to the emergency de- partment or the quickly shifting situations in ICU, nurses need to remember that amidst the technology are real people who need connec- tions. You may need to take a breath and briefly step back so you can focus on the “bigger picture” before you are able to help the family, but it is critical that someone takes time for them. All of the ways that you can connect with families can work in ICU and emergency department settings, but you need to create some space for the family to ensure that the connections and communica- tion happen. If family members are in the room, you need to talk with them, explain what is hap- pening, and be available to answer their ques- tions. If they are waiting outside, make sure they

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have somewhere comfortable and private to sit, and provide frequent updates about their loved one. If you yourself are too busy providing urgent care for the patient, make sure that someone is designated to care for the family members and to keep them involved as much as they want to be. It is especially important that after a sudden or traumatic death, nurses provide family members with information about what will happen (e.g., in- volvement of the coroner, how to contact a fu- neral home, and how to obtain support in the future). Nurses should also make sure that a family member has a companion before leaving the set- ting, so a friend or relative may need to be called to be with the family member.

Sudden life-threatening events also bring the possibility of administering cardiopulmonary re- suscitation. Although some debate exists regard- ing the presence of family members during attempts at resuscitation, many settings do allow for it. Parents in particular may voice a strong belief that it is their right to be present during these events (McGahey-Oakland, Lieder, Young, & Jefferson, 2007; Meert et al., 2005; Rini & Loriz, 2007; Wisten & Zingmark, 2007), because they believe that their presence is a source of strength and support for the child and being present offers the opportunity to see for them- selves that everything possible was done to assist their child. Families need frequent updates if they choose not to be present and must be given information about what is happening if they are present (McGahey-Oakland et al., 2007).

Dying at Home Families need professional support, particularly in the area of symptom control, to make a home death “happen” (Brazil et al., 2005). Caring for a dying family member at home can be extremely demand- ing work—physically, emotionally, psychologically, and spiritually. The primary caregivers require sup- port and resources to be successful. First and fore- most, the family and the nurse need to discuss the dying process, existing resources, and present and future needs. Then together they can develop a plan that anticipates changes. For example, symp- tom crises, such as escalating pain, need to be an- ticipated and addressed in advance. When the family is committed to supporting death at home, it can be devastating when a symptom crisis results

in death in the middle of a busy emergency depart- ment. Box 10-7 provides some practical suggestions about what you need to consider and perhaps facil- itate when someone is dying at home.

PALLIATIVE CARE AND END-OF- LIFE FAMILY CASE STUDIES

Two family case studies are presented in this section to demonstrate the art and science of family nursing in palliative and end-of-life care. The Jones family was introduced in Chapter 3 and is reintroduced here to demonstrate family care when the person who is dying is the mother. Please return to Chapter 3 and reacquaint yourself with the family and famil- iarize yourself with the Jones family genogram in Figure 10-2. The Garcia family case study illustrates how a student nurse working with a preceptor assists a young family with the death of an infant.

Families in Palliative and End-of-Life Care 305

BOX 10-7 Practical Considerations When Someone Is Dying at Home

■ Involvement of expert resources, such as hospice, and an interprofessional team, including volunteers.

■ Symptom management plan, including anticipating changes such as inability to swallow and the need for parenteral medications, as well as management of breathlessness and agitation.

■ Advance care planning, including the presence of a “Do Not Resuscitate” order if necessary.

■ Equipment such as a hospital bed and commode. ■ Identification of willing informal support persons

(friends, church, extended family). ■ Development of a list of things that willing people can

do, for example, a calendar for preparation of meals, house cleaning, someone to visit so the caregiver can get out for a walk.

■ Respite for the caregiver(s), which may be planned hospice admissions or the overnight placement of a paid professional.

■ Financial implications and available support, for exam- ple, compassionate benefits program.

■ Contact numbers of resources. ■ Discussion of unfinished business to enable a peaceful

death. ■ Discussion of alternatives should dying and death at

home become impossible for any reason.

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306 Families Across the Health Continuum

Amy 19 yr

Katie 13 yr

Travis 4 yr

Freshman at university 180 miles away Healthy

Sixth grade Healthy Usually a good student, now showing some difficulty noted by teachers

Preschool, moved to full day Healthy

Full-time software engineer

Multiple sclerosis: Progressive and relapse UTI Constipation Difficulty swallowing Requires supplemental 02 Uses wheelchair

Ralph

Elise 70 yr

Full-time employed teacher, high school

Tom 64 yr

Sally 63 yr

Full-time employed secretary

Linda 43 yr

Robert 48 yr

FIGURE 10-2 Jones family genogram.

Family Case Study: Jones Family Linda, the mother in the Jones family, has been living with multiple sclerosis (MS) for 13 years. Early in the illness, Linda experienced relapses where her symptoms worsened, but these were followed by periods of remission where she recovered back to “normal.” Since Travis’s birth, her relapses became more frequent, and although her symptoms some- times improved a little, her condition steadily worsened.

Before Linda’s discharge from the hospital where she was treated with antibiotics for pneumonia after aspiration, the primary nurse, Catherine, initiated a family meeting with Linda, Robert, and Linda’s physician. Catherine had noticed Robert’s fatigue and his repeated questions about whether Linda was really ready to come home. Catherine had also noticed Linda’s reluctance to take medications (particularly for pain), her determination to walk with her cane despite serious unsteadiness, and the deepening si- lence between the husband and wife.

Catherine began the conversation by asking Linda and Robert about their understanding of the MS at this point. Linda quickly responded, saying that the pneumonia was really an unusual “one-time” problem, and although it had set her back, it would not be long before she was back on

her feet. Robert worried out loud that it seemed things were getting progressively worse. He was concerned about how Linda would manage at home alone in the mornings and with Travis in the afternoon when he re- turned from preschool. Noticing the difference in perspec- tive, Catherine acknowledged she could see how there might be differences because MS is, indeed, a “tricky” illness that is difficult to predict. She asked Linda and Robert to think back to how things were a year ago and to what had happened over the last year. Both noticed that the hospitalizations had become more frequent, the re- coveries were more difficult, and overall, Linda was not doing as well. The physician, Dr. Brooks, who had been listening quietly, remarked that, although MS was often an unpredictable disease, it seemed that Linda’s MS had changed into a different kind of illness than it had been at first. He agreed that now the MS was more steadily pro- gressing, and that it seemed things were getting worse more quickly. Linda said she could see this but kept hop- ing that the situation would turn around.

Catherine then asked what the family’s goals for care were. Linda was quick to answer, “Remission—I want full re- mission.” Robert was slower to reply. He said, “I am so tired, and it hurts me so much to see you suffer. I want you

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Families in Palliative and End-of-Life Care 307

to be comfortable, to be free of pain, to enjoy the kids rather than snapping at them...” Linda said, “I’m just trying so hard to get back to normal. I always thought that a wheelchair would be the end for me. And I’m just so tired.” Catherine acknowledged that MS often creates profound fatigue in many family members and wondered which of the children might be most affected. Both Linda and Robert agreed that, of the children, Katie was suffering the most from tiredness. She picked up a lot of the pieces of Linda’s work in the home, beginning supper preparations and looking after Travis. Often, she would be up late at night working on homework, but her grades had been slip- ping and she had been crying more. Linda worried that Amy was also tired as she spent a great deal of time driv- ing home on weekends to care for the family.

Dr. Brooks interjected at this point saying that their pri- mary goal for care during this hospitalization had been to cure the pneumonia. He noted that, although they were successful, they had not been able to assist Linda toward a remission of her MS. He remarked that with the change in the MS, it seemed that the hope for remission might not be possible. He then asked, “If things continue the way they are going, where do you think you will be in six months?” Linda began to cry and said she was thinking she might not be alive. The pneumonia scared her, and she was fright- ened about aspirating again, so she had been decreasing what she ate and drank. Robert was worried about how he could continue to work full time supporting the family and also care for Linda at home, especially as it seemed there was so little he did that was “right” for Linda.

Catherine replied that the “new” MS was clearly creat- ing challenges for the family and wondered if it was time to shift the focus of care more toward comfort and quality of life for all family members, while at the same time working to prevent problems such as aspiration. She ex- plained that as illness gets more demanding, additional supports are needed. She also explained that as illness gets intrusive, attention needs to be paid to what is most important to living well for all family members. Linda was getting tired at this point and having a lot of difficulty hold- ing her head up, so Catherine asked if they could sched- ule another meeting. Robert and Linda readily agreed, saying they knew they needed to talk about these things but just did not know how. Catherine asked them to do some homework: to each identify their biggest concern, as well as what was most important to living well at this time. They were asked to find this out from the children too, and a meeting was scheduled for the next day. Dr. Brooks let them know that he wanted to speak with them about Linda’s preferences for care should she have another ex- perience with pneumonia.

The next day, Linda, Robert, Catherine, and Dr. Brooks all met again. Linda began the conversation, saying she had done a great deal of soul searching and was most worried about suffering from unmanageable pain and being a burden to her family. She was wondering if per- haps she should not go home but should be admitted into a care facility. Robert was most worried about burning out and not being able to support Linda and the children as he wanted. They had had a three-way conversation with each of the children last evening. Amy was most worried that her mother was going to die, and she let her parents know that she was planning on leaving university to move back home. Katie was most troubled by her lack of friends as her friends were no longer including her in their activities. Travis missed his mother, and wanted her to be able to read stories to him and play with him more.

The things that were most important to Linda’s quality of life were reducing her pain, having Amy continue at uni- versity, being more involved in Katie’s and Travis’s everyday lives, being able to attend a service at her church on a weekly basis, and reconnecting with Robert. She said her greatest hope was to be at home as long as possible. Robert wanted to be able to sleep, to go to work without constantly worrying about Linda, and to reconnect to Linda. He too wanted her at home as long as possible. Both Linda and Robert agreed that for them to live well, they needed more help in their home. Options were discussed, including the possibility of Elise (Robert’s mother) moving in to be of assistance, and preplanned, short stays in hos- pice for respite. Linda did not want Elise doing her personal care, so again, they discussed their options. Dr. Brooks and the family developed a systematic plan for pain manage- ment. During the assessment process, he learned that Linda was refusing her medications because she was con- cerned they were contributing to her irritability with Robert and the children. He was able to reassure her that this was not the case; in fact, her unmanaged pain was more likely a major negative influence. They devised a plan for long- acting pain medication so that Robert would be able to sleep through the night. They consulted a dietitian regard- ing ways to manage swallowing problems, and scheduled a home assessment by the team physiotherapist so as to safely maximize Linda’s mobility.

Both Catherine and Dr. Brooks commended Linda and Robert on the deep love they saw between the couple and how effective they were at problem solving, systematically working their issues through until achieving a mutually sat- isfying outcome. Finally, Dr. Brooks raised the topic of what Linda’s preferences for care would be if she should experi- ence development of pneumonia again. He explained that

(continued)

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308 Families Across the Health Continuum

this was a real possibility because Linda’s respiratory mus- cles were weakening. Dr. Brooks understood that both Linda and Robert wanted her home as long as possible, so he was curious about whether she would want to come to the hospital to be treated with intravenous antibiotics as she had during this hospitalization. Linda stated this would be her preference, especially if she was likely to be able to go home again after the treatment. Dr. Brooks explained that as her muscles become weaker, she might need the assistance of a breathing machine (ventilator) to give the antibiotics time to work against the infection, and asked whether she would want that. Linda was not sure what her preference would be in this situation, but she was very clear that she did not want to be “kept alive on a machine.” She and Robert wanted more time to discuss this question, and they wanted to consult with their pastor, so they agreed to continue the conversation at the next doctor’s appointment. Robert and Linda agreed to visit the local hospice to explore respite opportunities, as well as end-of- life care, should staying at home prove too difficult.

Three weeks later at the scheduled appointment with Dr. Brooks, Linda let him know that many things were going better with Elise in the house and home visits from Catherine, as well as a personal care aide. Amy agreed to stay in college with the promise from her parents that she would be told immediately if Linda’s health changed. All family members were feeling less tired. Linda stated that she was not ready to leave Robert and the children, but was in a dilemma about the use of a ventilator if she de- veloped pneumonia. She continued to worry that she might be kept alive on the machine, which to her would not be considered living. Dr. Brooks explained that, if nec- essary, one possibility was a time-limited trial of a ventilator to determine whether the antibiotics would work. Both Linda and Robert agreed. This was a difficult discussion, and Linda expressed distress about her loss of independ- ence and her deep sorrow about the possibility of leaving her children. She admitted to swinging between despair and anger, and that both made it hard for her to enjoy her days. This was new information to Robert, who had noticed her struggling but thought things would work out over time. Through assessment, it became apparent that Linda was experiencing depression. She agreed to try an antidepres- sant medication and to join a local MS support group.

Eight Months Later: Linda experienced fever, congestion, and shortness of breath after aspiration. The health team initiated antibiotics and managed symptoms to relieve pain, breathlessness, fever, and constipation. Linda occasionally had periods of acute shortness of breath where she worried that she might

not be able to take her next breath. The fear served to make the breathlessness worse, so the visiting nurse showed both Linda and the family how to slow and deepen breathing by consciously breathing together. Dr. Brooks made a home visit and asked Linda about admission to the hospital. When he could not assure her that she would get off the ventilator, Linda declined, saying she wanted to stay with her family. Robert agreed. A family meeting with Catherine and Dr. Brooks was held at Linda’s bedside to dis- cuss what the family would experience if the pneumonia progressed. They developed a family ecomap (Fig. 10-3) and they increased support services with more frequent vis- its from the nurse, care aide, and friends (particularly from Linda’s support group). They discussed a move to hospice, but all agreed that home was the best place for Linda, and that death at home was their preference.

Linda engaged in one-on-one time with each of her chil- dren. They talked about their best memories together, what they most loved about each other, and their hopes and dreams for the future as the children grow up. Robert partici- pated by videotaping the conversations. Each child was given a journal, and together with Linda, they drew pictures, wrote notes, and gathered mementos to capture these con- versations. She organized gifts for their birthdays and for Christmas in the upcoming year. It was not that she knew she was dying, but she had been encouraged to plan for the worst and hope for the best, to do the things that needed doing. The family received the same encouragement so they were all able to have special time with Linda over the last few months. Linda died surrounded by her family.

Six Weeks Later: Catherine visited the family six weeks after Linda’s death and found them managing well. Pictures of Linda were everywhere. Elise continued to live with the family, and they thought this was the best plan for the time being. Robert had taken some time off work to be with the children after Linda’s death, but shortly afterward all went back to work and school. Amy still came home on some weekends. Robert, Amy, and Katie talked of their sense of having done the very best they could to honor Linda’s preferences. They took comfort in the fact that she died at home. They marked the 1-month anniversary of Linda’s death with a visit to her grave site, taking flowers and a picture Travis had drawn of his mother. Family members drew support from different sources: each other, friends, their pastor, and some of the people from the MS support group who continued to visit. The children continued to read and reread the letters Linda had written; for Travis, this was part of his bedtime rit- ual. They were sad, and some days were better than others; they had a sense that the weight of their grief was lifting.

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Families in Palliative and End-of-Life Care 309

Elise moved into family home to provide support and help

Catherine

Dr. Brooks

Church: strong support for family, especially Robert

and Linda

Interdisciplinary team: dietitian,

caring aide

MS support group

Friends not supportive; now

leaving Katie out

School: failing grades causing

distress

Travis

Linda

Ralph

Elise

Preschool: does not want to

go; wants to stay home

with mother

KatieAmy

University: enjoying studies; stressed by the

travel home

Robert

Work is supportive: gives Robert a break from caregiving

FIGURE 10-3 Jones family ecomap.

Family Case Study: Garcia Family—Living and Dying a Good Death; Saying Hello and Good-Bye

You are a nursing student in your final clinical placement. I am your preceptor, a clinical nurse specialist (CNS) on the palliative care team in a children’s hospital. You asked for this placement as a final-year nursing student because you have come across a number of situations during your stu- dent experiences where you wished you knew how to talk and be with a patient and her family when the patient was dying. You realize that all nurses, from novice to expert and in all areas of nursing practice, need to develop skills in the area of death and dying. Please acquaint yourself with the Garcia family genogram in Figure 10-4. Consider

what it would be like if you were the student working with this family.

We have received a new consultation to meet with Emma and her parents, Eduardo and Karina Garcia. We learn that Emma is 7 days old and is a beautiful little baby with a perfect little face, big dark eyes, and lots of dark hair. Emma is on a ventilator because she has se- vere congenital muscular dystrophy and is unable to breathe on her own. Babies with severe disease, like Emma, have a very limited life expectancy, typically only a few weeks. Her severe muscle weakness means she is not able to breathe on her own for any length of time. We have been asked to meet with Emma and her family because they have decided, in consultation with their health care team, to withdraw ventilator support. As part of the palliative care team, we have been invited to assist

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310 Families Across the Health Continuum

Sara 4 yr

Garcia Family West Coast

Married 8 yr

Markus 6 yr

Alejandra 54 yr

Gordon 52 yr

Carlos 55 yr

Elaine 52 yr

Karina 30 yr

Emma 7 days

Muscular Dystrophy

Eduardo 32 yr

Forestry

East CoastMexico

FIGURE 10-4 Garcia family genogram.

Eduardo and Karina to decide how, when, and where the withdrawal might occur.

Before meeting with this family for the first time, we re- alize how important it is to prepare ourselves. We know that we need to pause for a moment and consider how we might begin this conversation with Eduardo and Karina. We also want to ensure that we have in place whatever we might need to facilitate this first meeting.

We make arrangements to meet with Eduardo and Ka- rina in a quiet, private room where we will not be inter- rupted. Pagers are turned off and other staff are covering for us so that we will have time to sit with the parents and really listen to what they have to say. Given that there will be several challenging things to discuss, we invite the neonatal intensive care unit (NICU) social worker, who al- ready has a relationship with the family, to join us for this meeting.

Before meeting the family we spend some time talk- ing about different ways to begin the conversation with the parents. There are as many ways to start this conver- sation as there are clinicians. This is the beginning of what we hope will be a therapeutic relationship during

one of the most difficult times a family can experience. Eduardo and Karina need to know who we are. It is often hard for parents to keep track of health care professionals— who we are, what we do, and how we can be helpful. This is especially true in highly emotionally charged situa- tions. So typically we start with brief introductions. Some- times, rather than starting the conversation by saying why we are here, it is helpful to gain an understanding of why the parents think we are meeting and then continue from there.

We start the meeting by each introducing ourselves. Then one of us says, “Tell us your understanding of why we are meeting today.” To facilitate our connection with this family, we also ask Eduardo and Karina to tell us about Emma—not her medical condition, but what they have no- ticed about her or experienced in their relationship with her as parents. In answer to our query, one of the things Karina tells us is that she thinks Emma has Eduardo’s eyes. Ed- uardo has noticed that she follows Karina with her eyes and he says, “She really knows her mom.”

We learn that after talking with both sets of grandpar- ents (mostly by telephone as Eduardo’s family is in Mexico

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where he and Karina met and Karina’s parents live across the country), the health care team, and their priest, Karina and Eduardo have indeed come to the decision that the most loving thing they can do as parents is to withdraw Emma’s ventilator and allow natural death. We encourage them to discuss their concerns, fears, and hopes for the time they have now with Emma. There is much silence and tears as the parents try to put into words all the thoughts swirling in their heads. They tell us that their focus is on having Emma experience as much of normal newborn life as she can. And they want to touch her and care for her. They want her to spend time with her 4-year- old sister, Sara, and 6-year-old brother, Markus; to be in her car seat; to be bathed, cuddled, and have her diaper changed by both her mom and dad; to be baptized; and most of all to see the sun. We learn that it was the middle of the night when Emma was born and then immediately transferred from her small community to our tertiary urban hospital 3 hours away, so she had seen the moon but not the sun. Eduardo is a forestry worker and the family loves to be outdoors. They cannot believe that one of their chil- dren will never spend any time outdoors. Neither Karina nor Eduardo had been able to hold Emma before she was whisked away. Karina has held her in the NICU, but Eduardo has been reluctant because of all the tubes. He is feeling sad that her pervasive muscle weakness means she cannot grab onto his finger the way Sara and Markus did as babies and he is searching to find another way to connect with Emma. Both parents express worry about how to help Sara and Markus understand what is happen- ing in a way that does not frighten them. Although both Karina and Eduardo are committed to their decision, they are afraid that Emma may suffer when the ventilator is withdrawn. They are worried about watching her struggle for breath. The parents ask us for a week to have these ex- periences with Emma; they also want time for additional family members to visit and to plan for withdrawal of the ventilator.

Following our meeting with Eduardo and Karina, we meet with the involved NICU staff members, who are quite concerned with the proposal that we wait a week to dis- continue the ventilator. This is not the way it usually hap- pens and they worry the family will only become more attached to Emma, finding it harder and harder to let her go, or that something will change in Emma’s health status that may lead to an earlier death than what the parents ex- pect. We provide further explanation and facilitate a meet- ing between the parents, Eduardo and Karina, and the NICU staff. At the meeting, NICU staff members are able to

express their concerns and the family is able to respond, as well as talk about their wishes. Hearing each others’ fears and hopes is helpful and there is now agreement and sup- port for the parents’ request. Eduardo and Karina under- stand that it is possible something could happen unexpectedly with Emma and, although everything possible will be done to ensure that she is comfortable, the staff would not provide cardiopulmonary resuscitation (CPR) if her heart stopped.

Emma and her parents move into one of the private family rooms in the NICU. Karina’s parents, Elaine and Gor- don, who came to care for Sara and Markus in the family home, bring them to stay in a nearby hotel. This proximity enables them to visit often and to get to know the newest member of their family. Before their first visit, we spend time talking with Eduardo and Karina about how to prepare the siblings for seeing Emma, as well as explaining similari- ties and differences in how Sara and Markus may under- stand what is happening. Another member of the team, a child life therapist, spends time with Sara and Markus indi- vidually and together to assess and support their under- standing and coping with Emma’s illness. Eduardo and Karina join some of the discussions and have some of their own time with the child life therapist. They learn how young children come to understand serious illness and death and that Sara and Markus will likely have questions about Emma for many years. They are happy about the picture books and other resources on how to support their children over time.

During the week, even in the midst of the technol- ogy that is still needed to keep Emma breathing, Eduardo, Karina, Grandma Elaine, Grandpa Gordon, Sara, and Markus do all the things that families with newborns usually do. The family is given the opportu- nity to say hello and good-bye to their new family member all at the same time. Eduardo holds Emma for the first time and they take many, many pictures and videos. They give Emma her first haircut and each save a tiny lock of hair tied with a ribbon. Sara and Markus each create a memory box with drawings, the locks of hair, Emma’s hand and foot prints, and copies of the photos. They also help the child life therapist make molds of Emma’s hands and feet and of their own. Eduardo’s parents arrive from Mexico and several close family members and friends come to meet Emma and witness her baptism in the hospital chapel. The list of hopes and dreams for this time gets ticked off. Eduardo and Karina also use this time to contact a funeral home

(continued)

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312 Families Across the Health Continuum

in their home community and make arrangements with their priest for her wake and funeral.

One day we take Emma, her parents, her siblings, and her grandparents outside to the hospital’s play gar- den where it is beautifully clear and sunny with a gentle breeze blowing. Hospital security has closed the garden to other families and staff so it is intimate and peaceful. Emma is able to feel the sun on her face for the first time. The child life therapist is there to support Sara and Markus. They both seem to enjoy this family outing; running over to see Emma, giving her a kiss, and then heading off to explore the sandbox and the swings be- fore coming back again for a hug from their parents. Eduardo and Karina ask if we think that Sara and Markus really don’t understand the situation and that is why they keep running off to play. The child life thera- pist reassures them that this is a typical way for children to cope and essentially they are just taking in what they can handle at their own pace. The child life therapist continues to follow the children’s lead in supporting whatever they want to do and wherever they want to be in the garden. A nurse from NICU stays close to Emma to assist her to breathe while she is being held by her parents and grandparents. Everyone relaxes and shares stories about Karina’s pregnancy, the labor and delivery, and the things they have learned about Emma the last few days. We take more family pictures and video to send to the rest of the extended family that night. To our surprise, the parents feel so comfortable in the garden that they ask if the ventilator can be discontin- ued in the garden. We set about making this request happen.

Eduardo, Karina, and Elaine meet with us, the neona- tologist, the NICU CNS, and the NICU social worker; we explain how we will keep Emma comfortable when the ventilator is withdrawn. The family is reassured to learn that there are medications that will ensure that Emma does not struggle for breath and that we will not allow her to suffer. Eduardo asks what it will be like when the venti- lator is taken away. We are able to help them understand that we do not know how long Emma will be able to breathe without assistance, but it could be minutes to hours; her breathing will slow, become irregular, and then stop. Her color will change and she will feel cool. Eduardo and Karina decide that they would like to be by them- selves with Emma when she dies. Sara and Markus will stay at the hotel with their grandparents and then may come back to see Emma before she is taken to the fu- neral home.

Both parents seem to be coping fairly well with the situ- ation, with Eduardo taking on the role of the “strong one” and Karina appearing more fragile. On the day of Emma’s death, however, we are surprised at the reversal of roles, as Eduardo looks disheveled and distressed while Karina has done her hair and makeup; she’s wearing a special outfit and seems “in control.” We had hoped for sun, but some- how the weather seems more in keeping with the mood. You comment to her parents that Emma has seen the moon and the sun and now she is experiencing a true West Coast day—foggy and gloomy! Emma is given some medications so she won’t experience any pain or distress and is settled with her parents in a secluded corner of the garden. The priest performs last rites. The nurse removes all of the tape and then the endotracheal tube while Emma remains peaceful in her parent’s arms. We give the family private space to be together but, along with other mem- bers of the team (the priest, the NICU social worker, and the NICU nurse with additional medications ready in case Emma experiences any distress) are available in the play garden if needed.

The play garden is on a busy street and we are con- cerned that the level of traffic noise might be disturbing to the family. Our concerns are heightened when the siren starts at the nearby fire hall and the fire truck roars past; Emma’s dad simply walks over to the fence and lifts her up to see her first fire truck. Emma and her parents walk the paths of the garden. Although there is still bustle and noise around them, it is clear that Emma and her family are in their own little world. Although they had op- portunities to do “normal” family things over the last week, this is the first time Emma and her parents experi- ence each other without interference of machines, tubes, wires, or other people.

Emma lives for another 2 hours. After she dies, her parents continue to hold her for another hour. Both sets of grandparents return with Sara and Markus to say good-bye to Emma. Although the children were both told what Emma would look and feel like after she died, Markus in particular has many questions about whether or not she is hungry, why she is cold, and if she is just sleeping. Karina responds gently to all of their questions to help them understand what has happened. When the family is ready, Sara and Markus spend some time with the child life therapist while a senior nurse, Patrick, part- ners with you to help Karina and Eduardo prepare Emma’s body. Patrick asks the parents if they have any special rituals they would like to do and he also explains about what needs to be done to meet the hospital rules.

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We let Karina and Eduardo know that they will receive a letter with an appointment to see a geneticist in about 6 months. Because there was a genetic component to Emma’s diagnosis, they may want to explore genetic testing and understand any possible risks for future pregnancies. A follow-up visit with the NICU neonatolo- gist, CNS, and social worker will be coordinated to occur on the same day to respond to any questions the par- ents may have about Emma’s illness and death, as well as to see how they are all coping. They are invited to bring Sara and Markus at that time to meet with the child life therapist.

We also let them know that the NICU has a formal program where, with the parents’ permission, staff nurses are supported to contact families at regular intervals in the first year after the death and then send a plant on the 1-year anniversary. Karina and Eduardo express their ap- preciation for such a program and say they can only imagine how hard it will be on the anniversary of Emma’s death; to know that the NICU staff who looked after her will be thinking of them gives them great comfort.

Families in Palliative and End-of-Life Care 313

Everyone works together and though it is sad there is also a peacefulness as Karina and Eduardo talk about how happy they are to have done things the way they wanted to. They thank you and Patrick and say how grateful they are that the staff made it possible for Emma to die in peace in such a beautiful setting; Karina and Ed- uardo say that they will never forget what the staff did. With one last kiss on Emma’s forehead, they leave for home with the rest of their family.

Patrick assists you to complete all of the charting and necessary paperwork related to Emma’s death. As Eduardo and Karina decided against having an autopsy, Emma does not need to go to the hospital morgue. Patrick calls the fu- neral home and accompanies you as you carry Emma’s body in a special softly colored and patterned bag to meet the funeral home director at the staff entrance to the hos- pital. You return to the unit and spend some time talking with Patrick and me. We make sure that you have a way home and a friend available to spend the evening with you. I also contact your clinical coordinator to let her know about the day’s events to make sure that you have some ongoing support from the faculty. A few days later I invite you to attend a special debriefing session to be held with NICU staff.

As the funeral is held 3 hours away, you are unable to attend. I suggest that you may want to send a note to the family and offer to review it if needed (Box 10-8).

One Month Later: That was not the end of our relationship with this family. We make a home visit a month after Emma’s death where we learn about the funeral. Karina and Eduardo remark that they were very happy when two of their fa- vorite NICU nurses came to Emma’s funeral. They tell us about how moved they were when they received notes from you and some of the other nurses, as well as a card from NICU staff. They tell us that it helps them to know she touched the hearts of those who looked after her. We discuss how Karina and Eduardo are managing as a couple and as parents. Eduardo is back at work; Sara and Markus are back at preschool and school. Both sets of grandparents have gone home. At this point we draw an ecomap (Fig. 10-5) of the family’s community connections, discuss their experiences of grief, and work together to map out avenues of support available locally.

BOX 10-8 Example Note to Family From Student Nurse

Dear Eduardo, Karina, Markus, and Sara, It was my privilege to get to know all of you and to

meet Emma. She had the most beautiful expressive eyes and so clearly looked at each of you when you spoke to her. It was amazing to watch all of you to- gether and to see Emma experience so much life in such a short time. Your love for her and for each other was evident in everything that you did.

I learned so many things about how families can be together and live life to the fullest even in the midst of such difficult circumstances. I know my ex- perience with your family will make me a better nurse with other families in the future. Emma and all of you will forever remain in my thoughts.

All my best, ___________, Student Nurse

(continued)

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314 Families Across the Health Continuum

Friends

Preschool

Sara 4 yr

Markus 6 yr

Eduardo 32 yr

Karina 30 yr

7 days

Extended family

School

Volunteer work at Markus’

school

Best friend

Palliative team bereavement

support

Priest and church

community Work

Strongly attached

Moderately attached

Slightly attached

Very slightly attached

Negatively attachedFIGURE 10-5 Garcia family ecomap.

SUMMARY

Nurses are in a unique position to help families manage their lives when a loved one has a life- limiting illness or faces an acute or sudden death. Providing palliative and end-of-life nursing care as you accompany a family during this intense pe- riod is a privilege that should not be taken lightly. The importance of the nurse-family relationship in affecting and effecting positive outcomes can- not be overstated; this relationship can make the difference between a family who has good mem- ories about their loved one’s death and a family who experiences prolonged suffering because of a negative experience. Open and trusting com- munication; physical, psychological, and spiritual support; and respect for the families’ right to make their own decisions, as well as support to

facilitate these decisions, are essential compo- nents of quality palliative and end-of-life care. The following points highlight the concepts that are addressed in this chapter:

■ Palliative and end-of-life care is inherently family focused.

■ The principles of palliative care can be en- acted effectively in any setting, regardless of whether death results from a chronic illness or a sudden/traumatic event.

■ All nurses need to develop at least basic com- petencies in the area of death and dying.

■ Therapeutic nurse-patient and nurse-family relationships are central to quality palliative and end-of-life care.

■ Nurses who incorporate the principles of pal- liative care are more effective in tailoring their nursing practice and family interventions.

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Steele, R. (2002). Experiences of families in which a child has a prolonged terminal illness: Modifying factors. International Journal of Palliative Nursing, 8(9), 418–434.

Steele, R. (2005a). Navigating uncharted territory: Experiences of families when a child is dying. Journal of Palliative Care, 21(1), 35–43.

Steele, R. (2005b). Strategies used by families to navigate un- charted territory when a child is dying. Journal of Palliative Care, 21(2), 103–110.

Steele, R., & Davies, B. (2006). Impact on parents when a child has a progressive, life-threatening illness. International Journal of Palliative Nursing, 12(12), 576–585.

Steele, R., Davies, B., Collins, J. B., & Cook, K. (2005). End-of- life care in a children’s hospice program. Journal of Palliative Care, 21(1), 5–11.

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Torke, A. M., Garas, N. S., Sexson, W., & Branch, W. T., Jr. (2005). Medical care at the end of life: Views of African American patients in an urban hospital. Journal of Palliative Medicine, 8(3), 593–602.

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Wall, R. J., Engelberg, R. A., Gries, C. J., Glavan, B., & Curtis, J. R. (2007). Spiritual care of families in the intensive care unit. Critical Care Medicine, 35(4), 1084–1090.

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Weidner, N. J., Cameron, M., Lee, R. C., McBride, J., Mathias, E. J., & Byczkowski, T. L. (2011). End-of-life care for the dying child: What matters most to parents. Journal of Palliative Care, 27(4), 279–286.

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Wiegand, D. L. (2006). Withdrawal of life-sustaining therapy after sudden, unexpected life-threatening illness or injury: In- teractions between patients’ families, healthcare providers, and the healthcare system. American Journal of Critical Care, 15(2), 178–187.

Wisten, A., & Zingmark, K. (2007). Supportive needs of parents confronted with sudden cardiac death: A qualitative study. Resuscitation, 74(1), 68–74.

Wollin, J. A., Yates, P. M., & Kristjanson, L. J. (2006). Support- ive and palliative care needs identified by multiple sclerosis patients and their families. International Journal of Palliative Nursing, 12(1), 20–26.

Woodgate, R. L. (2006). Living in a world without closure: Reality for parents who have experienced the death of a child. Journal of Palliative Care, 22(2), 75–82.

World Health Organization. (2006). WHO definition of palliative care. Retrieved from http://www.who.int/cancer/ palliative/definition/en

Wright, L. M., & Leahey, M. (2005). Nurses and families: A guide to family assessment and intervention (4th ed.). Philadelphia: F. A. Davis.

Chapter Web Sites ■ American Academy of Hospice and Palliative Medicine: http://www.

aahpm.org

■ American Association of Colleges of Nursing End-of-Life Nursing Education Consortium (ELNEC) Project: http://www.aacn.nche. edu/elnec

■ The American Geriatrics Society: http://www.americangeriatrics. org

■ The Association for Children’s Palliative Care: http://www.act. org.uk

■ Association for Death Education and Counseling: http://www. adec.org

■ Canadian Hospice Palliative Care Association: http://www. chpca.net

■ Canadian Organization for Rare Disorders: http://www.cord.ca ■ Canadian Network of Palliative Care for Children: http://cnpcc.ca ■ Canadian Virtual Hospice: http://www.virtualhospice.ca ■ The Compassionate Friends of Canada Resource Links: http://www.

tcfcanada.net

■ Complementary Medicine Education and Outcomes (CAMEO) Program: http://www.bccancer.bc.ca/RES/ResearchPrograms/ cameo/default.htm

■ Education on Palliative and End-of-Life Care EPEC Project: http://www.epec.net

■ End of Life/Palliative Education Resource Center: http://www. eperc.mcw.edu

■ European Organization for Rare Diseases: http://www.eurordis.org ■ GriefNet.org: http://griefnet.org ■ Hospice and Palliative Nurses Association: http://www.hpna.org ■ Institute of Medicine of the National Academies: http://www.iom.

edu

■ National Hospice and Palliative Care Association: http://www. nhpco.org

■ National Organization for Rare Disorders: http://www. rarediseases.org

■ Promoting Excellence in End-of-Life Care (tools): http://www. promotingexcellence.org

■ Registered Nurses’ Association of Ontario (Best Practice Guidelines): http://rnao.ca/bpg

■ World Health Organization: http://www.who.int/cancer/ palliative/definition/en

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321

Trauma and Family Nursing

c h a p t e r 11

Deborah Padgett Coehlo, PhD, C-PNP, PMHS, CFLE

C r i t i c a l C o n c e p t s

■ Trauma is a key experience affecting the family system.

■ The threat or fear of death or serious injury is a salient feature of trauma.

■ Post-traumatic stress disorder (PTSD), which is a response to trauma, is more likely to develop when resiliency traits are lacking.

■ PTSD can be acute or chronic and can occur months, even years, after a disaster or traumatic event such as war.

■ The Ecological Systems Theory can guide nursing assessment and interventions to help families dealing with trauma.

■ When one or more family members are traumatized by an experience, all family members and family relationships can be affected.

■ The more severe the trauma an individual family member suffers, the more likely the other members of the family are to suffer secondary trauma.

■ The family response to trauma of one or more of its members cannot be understood or treated by focusing on individual family members alone. Family members can provide key contextual information about past traumatic events and experiences that help explain current responses.

■ Community systems can prevent, treat, and measure negative outcomes to traumatic events. If community agencies are not well trained and prepared, communities will suffer.

■ Larger political and social systems can influence and be influenced by individual, family, and community trauma. If nations experience severe trauma, they, as a whole, show signs of PTSD.

■ Nursing focuses on the individual, family, community, and societal reactions to trauma in order to optimize positive outcomes and prevent or treat negative implications.

Trauma has been an increasing area of attention across the field of mental health for the past two decades. Between the advanced understanding of brain function and general physiology, and the mind and body response to severe and/or prolonged stress; and the increase in trauma experienced by families through war, natural disasters, and family violence, the need to understand, prevent, treat, and

monitor the effects of trauma on individuals and families has never been more vital. Further, the effects of trauma transcend individuals and fami- lies, but also affect communities, and the broader society. Trauma influences future generations as the effects influence individual family genetics, and community and societal cultures. The negative effects of trauma are most profound during early

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childhood development, touching every domain of development, with the potential of negative devel- opmental outcomes in adulthood, such as higher rates of mental illness, unemployment, and failed relationships. The diagnosis of post-traumatic stress disorder (PTSD) has grown significantly over the past decade, as well as the understanding of differ- ences in symptoms across developmental ages and stages. Whereas the key symptoms of reexperienc- ing the trauma through painful memories and nightmares, hypervigilance, and emotional instabil- ity are common to adults, children are more likely to react with withdrawal and mood irregularity. These symptoms cross ethnic groups and time. The number of individuals with PTSD in turn affects communities. Larger cultures and societies shift as the number of trauma victims grows, adding other negative consequences, including poor health, higher rates of other mental health disorders, and an increase in family violence. The care of trauma in families, therefore, centers around preventing trauma when possible, and when not preventable, working toward positive rather than negative out- comes, building resiliency traits in individuals and families, and helping individuals and families work toward understanding the positive meaning trau- matic events can have on all of us. For example, families who experience trauma together, such as those experiencing natural disasters or terrorism to- gether, have a stronger connection to each other than those who never had these experiences (Ozer, Best, Lipsey, & Weiss, 2003). This chapter consid- ers developing knowledge about trauma and nurses’ key role in the field of trauma and emphasizes the importance of preventing, treating early, and en- couraging resilience and the ability to make mean- ing out of negative events. This chapter also stresses an understanding of secondary trauma, or the neg- ative effects of witnessing trauma of others, whether that other person is a stranger, family, or a patient of a nurse. This discussion is particularly salient for nurses, because they are some of the most likely professionals to encounter traumatized victims in their everyday practice.

The American Psychological Association began to categorize symptoms of PTSD in 1980. Since that time, researchers and clinicians have identified the complexity of this disorder, and the lifelong, intergenerational impact of repeated and pro- longed trauma experienced by individuals, families, communities, and societies. PTSD was a diagnosis

first recognized in 1980. Since this publication, research has attempted to clarify and expand the diagnosis to cover different categories of trauma, such as combat, horrific accidents, and child abuse; different content, such as domestic violence, natu- ral disasters, and war; and different cultures, such as genocide victims (Dyregrov, Gupta, Gjestad, & Mukanoheli, 2000) and victims of natural disasters across cultures and across time. The DSM-IV and DSM-IV-TR included PTSD as a subcategory under anxiety disorders, including three categories of symptoms (APA, 2000; McNally, 2004):

1. Reexperiencing the trauma 2. Avoidance and numbing 3. Increased arousal

The DSM-5 has taken PTSD out of the category of anxiety and developed a separate category titled Trauma and Stressor Related Disorders (Friedman, Resick, Bryant, Strain, Horowitz, & Spiegel, 2011; Schmid, Petermann, & Fegert, 2013). The scope has been expanded to include both experiencing a trau- matic event and witnessing or repeatedly hearing about a traumatic event. Further, the DSM-5 has included four categories of symptoms (APA, 2013):

1. Intrusion of thoughts about the trauma 2. Avoidance of discussion or other stimulus

reminding the person of the trauma 3. Increased arousal or sensory sensitivity 4. Negative cognitions and moods

Today, it is estimated that up to 10% of the gen- eral population across the world meets the criteria for a diagnosis of PTSD, with areas experiencing war or severe natural disasters experiencing the highest rates. When further divided between geo- graphical areas, ages, and genders, the prevalence rates vary with risks higher for women and adoles- cents, and lower in Asian countries (U.S. Department of Veterans Affairs, 2007). These rates, however, are lower when veterans are separated out of the general population. The National Vietnam Read- justment Study of 30,000 veterans of this war found that 31% of men and 27% of women who partici- pated in the Vietnam War had a lifetime prevalence of PTSD (Kulka et al., 1990). When evaluating 11,441 veterans from the Gulf War, only 10% were found to have symptoms consistent with PTSD (Kang, Natelson, Mahan, Lee, & Murphy, 2003). Veterans returning from Iraq and Afghanistan ap- pear to be following this pattern, with a current

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prevalence rate for PTSD of 13% (Tanielian & Jaycox, 2008). When considering children and ado- lescents, it is important to note that most PTSD is caused by (1) abuse and neglect across time, (2) wit- nessing violence within the home and/or neighbor- hood, and (3) experiencing traumatic events such as motor vehicle accidents and natural disasters (Salmon, Meiser-Stedman, Glucksmann, Thompson, Dalgleish, & Smith, 2011).

The number of studies on individual trauma and outcomes has increased in the past decade, as has awareness that PTSD is not limited to individuals, but rather affects individuals, families, communi- ties, and societies. The understanding of the polit- ical and societal influences on the diagnosis and treatment, and continued research in this area, ex- plains in part the continued need to explore trauma and the relationship to family health. The extent of damage to physical and mental health caused by trauma has now been realized. This chapter uses the Ecological Systems Model (Bronfenbrenner, 2005) to explore current understanding of risk and protective factors of PTSD, identify those experi- encing symptoms, and discuss treatment strategies to reduce symptoms and enhance recovery. Family nurses are in a key position to understand, recog- nize, prevent, and treat trauma at multiple levels. Case studies at the conclusion of this chapter illus- trate the complexities of trauma and its effect on all family members.

THEORY APPLIED TO PTSD

Trauma is treated differently now than it was in the past. Historically, health care practitioners consid- ered trauma to be a form of hysteria, meriting ineffective treatments such as hysterectomies. Cur- rently, the approach recognizes the modern under- standing of trauma as a complex stress disorder with a number of underlying theories applicable. For purposes of this book, we delve into PTSD using the Ecological Theory (Bronfenbrenner, 1984, 1995: Bronfenbrenner & Lerner, 2004) as the underlying model to guide practice. The Family Systems Theory likewise is helpful.

Ecological Theory In this model, Bronfenbrenner identifies four systems that interact together: the microsystem,

mesosystem, macrosystem, and exosystem. He later added the system of time, or the chronosystem (Bronfenbrenner, 1996), to describe the impact of history and time on individuals, families, com- munities, and societies. Time is integrated as a concept within each of the four other ecological systems. The understanding of the impact of trauma on a micro to exosystem level helps practi- tioners and policy makers understand the intercon- nections between trauma and abuse to individuals, families, communities, and societies, and the im- pact of that trauma across time, geographical and cultural systems, and generations. Trauma tends to repeat itself if nothing intervenes to stop the pattern. Interventions intended to stop and/or alter these patterns are much more effective when chosen and implemented with the complexity and interconnections between systems in mind. See Figure 11-1 for a visual portrayal of Bronfen- brenner’s Ecological Theory.

Microsystem The microsystem describes the individual and the systems within that individual, including physiolog- ical (i.e., respiratory, cardiovascular), developmen- tal, and psychological (i.e., sensory perceptions, memory). The role of trauma in violating and damaging physical and mental well-being and neg- atively affecting development of children and adults is no longer questioned. The negative impact of trauma on individuals ranges from interference with healthy development of attachment to physical and mental illness across the life span (Afifi, Boman, Fleisher, & Sareen, 2009). Although understanding the impact of trauma on individuals is important to understanding family trauma, care of these individ- uals in isolation is less effective than providing care within the context of the family. The microsystem provides a beginning knowledge to family trauma, but the mesosystem adds a deeper understanding.

Mesosystem The effect of trauma on any one individual within the family has a significant impact on family devel- opment and family functioning. As mentioned ear- lier, the DSM-IV-TR (APA, 2000) expanded its definition of trauma from an individual perspective to a broader definition that included experiencing, witnessing, being confronted, or being informed about an act of violence against others (APA, 2000). This broader definition has been supported by the

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DSM-5, with increased separation between devel- opmental stages and reactions to trauma (APA, 2013). This definition includes trauma experienced by families directly or witnessed by other family members, expanding the experience beyond the micro level to the meso level of reaction. For example, children’s reactions to trauma and their resiliency against PTSD are shaped in part by family experi- ences and reactions. Family members witnessing

trauma can and do experience symptoms of PTSD. The act of witnessing includes direct observation and hearing about traumatic events repeatedly from family members. Further, family members’ reactions to a traumatic event have a direct impact on whether or not other family members will expe- rience symptoms of PTSD. For example, if parents cannot regulate their own reactions and cannot support the child because of their own PTSD, the

324 Families Across the Health Continuum

CHRONOSYSTEM

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in person s or environment over time

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de at

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en t B

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oms of one’s culture, subculture, or social class

MACROSYSTEM

Extended Family EXOSYSTEM

MESOSYSTEM

MI CRO

SYSTEM

Friends of

family Neighbors

Mass media

Family Day-care center

Community health and

welfare services

Doctor’s office

Child

Legal services

Workplace

Church, synagogue Peers

School board

Sociohistorical Conditions

D isasters W

ar s

Critical events (e.g., parental divorce)

School Neighborhood play area

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School

FIGURE 11-1 Bronfenbrenner’s Ecological Systems Model.

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child is at higher risk for developing symptoms of PTSD. Likewise, if a parent lacks support and positive coping strategies, he is less likely to be able to provide support to the child.

Macrosystem Trauma at the macro level includes all trauma within a community. This level of trauma not only influences individuals (micro) and families (meso), but has an impact on how a community reacts and recovers from trauma. Over the past two decades, the growing disparity between mental health and access to mental health services within a commu- nity has been well documented (National Institute of Mental Health, 2008). Traumatic events within schools, for example, have increased the awareness of the need for more in-depth and comprehensive mental health services to prevent these events and to be available to treat the victims following these events. Schools have been identified as key community systems that can provide both preven- tion and treatment services. Over 60% of schools already attempt to address trauma at a community, or macrosystem, level through prevention services, and community preparedness such as town meet- ings and educational programs, provision of tem- porary food and shelter following a disaster, counseling services, and/or behavioral programs (Taylor, Weist, & DeLoach, 2012). Working with schools when it comes to trauma care improves outcomes, especially for traumatized youth (Cohen et al., 2009).

Exosystem The exosystem includes the larger culture and gov- ernment or laws and justice within a culture. The exosystem is touched by and touches on individu- als, families, and communities. For example, the cultural reactions and legal responses to a natural disaster have grave implications for individuals, families, and communities. Consider the response by the government to Hurricane Katrina in 2005, with the delays and the disorganization during and after the disaster. These gaps in services were believed to be a contributing factor to the high rates of PTSD in survivors (Mills, Edmondson, & Park, 2007). Researchers have explored the dysreg- ulation and hyperarousal of individuals during this time, and have found that similar processes can and do occur at a larger, systemic level. Judith Warner, in a 2010 New York Times article (Warner, 2010),

observed that the large-scale dysfunction of federal regulatory systems, including the banking melt- down, collapse of the housing market, and the failure of levees during Hurricane Katrina, resulted in the United States as a country struggling with symptoms of PTSD for several months after the hurricane hit the shores of Louisiana.

Family Systems Theory The Family Systems Theory focuses on the inter- action between family members, and the impact of an individual’s health and behavioral responses on other family members, as well as other family members’ reaction and health impact on individu- als. The metaphor of a wind chime is commonly used to describe the Family Systems Theory, with one chime being struck by other chimes to make music or cacophony. The wind flowing through the wind chimes represents the stressors that flow through every family. The wind can be a gentle breeze, or low stress level, or higher winds, similar to high stress and less controlled stress levels. The Family Systems Theory, when considered through an ecological looking glass, can help explain the impact of trauma within and surrounding families. The remainder of the chapter describes the types of trauma that individuals, families, communities, and societies at large face currently, along with implications for family nurses.

EARLY TRAUMA

Early trauma shapes early attachment to others, developmental progress, and early brain develop- ment. In the context of the Ecological Model, the impact of trauma in the individual child (micro) is strongly influenced by the responses of the parent(s) (macro) level.

Attachment Because early trauma has been shown to interfere with healthy development of attachment, attach- ment theories are used as a basis of research and understanding. Early attachment disorders are commonly linked to later issues with developmen- tal success and physical and mental well-being. Bowlby, an early researcher and theorist in the area of attachment, identified the importance of early

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attachment and the effect on later personality de- velopment, interpersonal relationships, self-esteem, and self-regulation of emotions, daily function, and behavior (Bowlby, 1973). Normally, an infant trusts caregivers to provide a safe environment to explore. When trauma occurs, such as abuse and severe neg- lect from caregivers, and when that trauma is re- peated and/or severe, an infant loses the basic coping and adaptation skills of compartmentalizing threats to self, therefore becoming disorganized, disconnected, dysregulated, isolated, and later strug- gling with separation between reality and fantasy.

Heller and LaPierre (2012), in describing their developmental trauma theory, categorized this early traumatic interference with attachment by de- scribing five core areas of concern: (1) interference with connection to others, (2) lack of attunement or ability to recognize physical and emotional needs, (3) lack of trust in caregivers and the envi- ronment, (4) difficulty with boundaries between self and others, and (5) difficulty developing a sense of love and healthy sexuality. Table 11-1 illustrates the Neuroaffective Relational Model with the Five Core Needs developed by Heller and LaPierre. More specific symptoms of trauma-induced attach- ment disorder include the following:

■ Absence of self-regulation—inconsistent and unpredictable patterns of eating and sleeping

■ Lack of response to caregivers—poor eye contact, lack of response to consoling measures

■ Lack of response to the environment—inability to pretend play, interact with toys, and/or

experience shared pleasure with others (Heller & LaPierre, 2012; Joubert, Webster, & Hackett, 2012)

If untreated, children experiencing trauma strug- gle in cognitive, emotional, and social development (Heller & LaPierre, 2012; Joubert et al., 2012; Perry & Pollard, 1998).

Developmental Trauma Theory The developmental trauma theory (Heller & LaPierre, 2012) describes the survival strategies in- dividuals (micro level) learn to cope with trauma; it expands the understanding of the negative impact of trauma on attachment. These coping strategies interfere with healthy development. For example, whenever an individual experiences a severe threat, a fight-or-flight response is activated. When re- peated trauma occurs, a state of constant fear devel- ops causing distinct physiological and psychological changes. At the core, stress hormones from the adrenal glands are released stimulating the sympa- thetic nervous system. The neurological system, in response, alerts the brain to stay in survival mode. Because this system is activated continuously when repeated trauma occurs, the individual’s ability to feel safe is threatened, resulting in a state of con- stant hyperarousal. The sympathetic nervous sys- tem eventually becomes overwhelmed, leading to an abrupt shift to the parasympathetic system, and the individual shuts down, withdraws, becomes numb, disassociates, or falls into sleep. Sleep, eating, and digestive patterns are affected, and excitable behavior builds again with the next remembered or experienced trauma. Emotions range from hyper- stimulated (i.e., hysteria or excessive, inconsolable crying) to numbness (no reaction to the environ- ment). Without resolution, the individual develops a state of fear, and gradually loses the ability to regulate emotional and autonomic reactions. If uninterrupted, the young child will develop sec- ondary complications, including anxiety, shame, isolation, mood dysregulation, and uncontrolled anger or explosive outbursts (Alisic, Jongmaks, Van Wesel, & Kleber, 2011; Salmond, Meiser- Stedman, Glucksmann, Thompson, Dalgleish, & Smith, 2011).

As a child develops into adulthood, he may try to adapt to those feelings by abusing substances or avoiding emotions (Dansky, Byrne, & Brady, 1999;

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Table 11-1 Neuroaffective Relational Model Five Core Needs

Core Need Description

Connection Lack of ability to form healthy connection with caregivers or significant support people

Attunement Lack of ability to recognize physical and emotional needs

Trust Lack of ability to trust others

Boundaries Difficulty setting healthy boundaries

Deep sense of Inability to form deep loving love and sexuality relationships, and, as adults,

connect deep love with healthy sexuality

Source: Heller & LaPierre, 2012.

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Heller & LaPierre, 2012). The underlying fear re- mains; the threat to self and to the ability to survive is not over. Symptoms emerge over time, including the following (Dansky et al., 1999; Glaser, 2000; Heller & LaPierre, 2012; Perry & Pollard, 1998):

■ Lack of affect ■ Feelings of shame ■ Separation from others ■ Avoidance of emotionally disturbing situations

or people ■ Overintellectualizing and avoiding of emotions ■ Lack of attunement or awareness of bodily

and related needs ■ Fear of being alone while at the same time

feeling overwhelmed by others ■ Fear of death and illness ■ Fear of their own anger ■ Fear of intimacy ■ Strong need to control ■ Desire for altered states and disassociation ■ Cognitive impairments, including difficulty

with auditory processing, memory, and attention

■ Feelings of helplessness ■ Hypovigilance or hypervigilance

Physical symptoms of prolonged and repeated trauma in childhood include the following:

■ Disrupted sleep ■ Eating disorders ■ Panic disorders ■ Obsessive-compulsive disorders ■ Rage ■ Depression ■ Addiction ■ Cardiovascular disorders ■ Autoimmune disorders

A pattern emerges across time. Figure 11-2 illus- trates the developmental pattern of maladaptation to early trauma.

Studies on the impact of war, terror, and unex- pected natural disasters on children have resulted in the identification of the term disaster syndrome (Smith, 2013). This syndrome is described as a combination of symptoms of PTSD—including anxiety, dissociation, depression—and grief from loss of people, support, routines, and assumptions regarding safety and regularity, and parental re- sponse. Parental response is influenced by parents’ prior diagnosis of mental illness, prior coping

strategies, and number of past traumatic experi- ences. Children respond to their family members’ emotional and physical changes related to trauma. When an individual (micro level) experiences trauma over time, his interaction with others (meso level) and his ability to interact in a functional man- ner with his community (macro level) are altered.

The human desire for regulation of the auto- nomic nervous system, with a return to balance, is strong. Individuals are highly motivated to find this balance, and will pursue strategies to achieve this goal through either positive measures (e.g., healthy patterns of sleep, eating, exercise, meditation or yoga, and spiritual connection), or negative meas- ures (e.g., drug-seeking behavior, obsessive think- ing patterns, or avoidance patterns) (Dansky et al., 1999). These negative patterns interfere with every stage of development, primarily altering cognitive, emotional, communication, and social domains. Although young infants cannot consciously think about their reactions to trauma, their emotions and related autonomic reactions are affected in a meas- urable way (Heller & LaPierre, 2012). Infants have bottom-up responses, or responses starting with brainstem or autonomic reactions to external threat, moving up toward emotional responses. Adults, in contrast, experience trauma initially from thought, or the cortex of the brain, and move down to emotional response, and finally autonomic or brainstem reaction. This is considered top-down reaction. Another important differentiation be- tween infants and adults is that infants tend to have a broad interpretation of experiences, whereas

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Negative coping

Dysregulation

Mis-attunement

Distress

Trauma

FIGURE 11-2 Developmental pattern of maladaptation to early trauma.

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adults are able to separate experiences and feelings between experiences. The difference in reaction is caused by the difference in development of path- ways from the frontal cortex to the brainstem as the brain develops across time. The pathways are reinforced by experiences and interactions in the environment. Figure 11-3 illustrates bottom-up and top-down responses to trauma.

This variance in response to trauma is important to understand: adults who experience trauma can make a distinction between different experiences in their lives, and as a result feel badly about a specific experience; infants and young children cannot dif- ferentiate between experiences and therefore when they experience trauma, they tend to think they are bad (Heller & LaPierre, 2012). Young children and adults, however, if left untreated following a trauma, can regress back to thinking and feeling they are bad as a global response to trauma.

Early Trauma and Brain Development The understanding of the impact of early trauma on brain development has led to detailed study of the impact on brain development and plasticity, or the ability of the brain to recover from injury. When considering trauma or major stress, the body is gov- erned by two main systems: the neurological system and the endocrine system. These two systems ensure survival of the individual through stimulation of the sympathetic nervous system when the individual is threatened, and the parasympathetic nervous system when the individual is safe and relaxed. Hans Selye, a renowned theorist on stress, identified the connec- tion between the hypothalamus, the pituitary gland, and the adrenal glands, now commonly referred to

as the HPA axis (Selye, 1976). To summarize this process, the hypothalamus links the nervous system to the pituitary system, which secretes hormones that regulate homeostasis. If homeostasis is not reached, the adrenal glands secrete the stress hor- mones, epinephrine and norepinephrine. These hormones stimulate the sympathetic nervous system, and the result is increased heart rate, dilation of pupils, relaxation of bronchial tubes, increased ten- sion and circulation of blood to large muscles, and initial stimulation of the frontal cortex through a surge of dopamine, followed by bypassing the frontal cortex to the amygdala.

This bypass process encourages rapid action based on the previous experience of threats, and the assumption that the same threat has occurred and the same action for survival is needed. When this process is stimulated repeatedly and without reso- lution, the connection between the limbic system— where automatic actions based on emotions and repeated actions rather than thought occur—and the cortex—or the thinking part of the brain that includes judgment, creativity, and prediction of ac- tion on future consequences—is pruned. When the connection is pruned, sensory perception becomes scattered and disorganized. By bypassing the frontal cortex, the individual exchanges accuracy, judgment, and the ability to learn, for speed. The bypassed frontal cortex provides the individual with the executive functions of detailed assessment, regulation of emotion or thought, inhibition of inappropriate responses, internal speech, and problem-solving skills. Over time, an individual constantly facing threat through trauma develops a fearful identity, avoids relationships due to pre- vious threats, has uncontrolled emotional outbursts

328 Families Across the Health Continuum

Thought

Top-down response to trauma

Emotion

Thought

Bottom-up response to trauma

Emotion

FIGURE 11-3 Top-down and Bottom-up reaction.

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or withdrawal, disassociates from the present, and/or experiences depression. The hippocampus, which is key in neuroplasticity or the ability to gen- erate new neurons and new neuron pathways (known as neurogenesis), is impaired. This process explains why many who experience prolonged and repeated trauma struggle with cognitive impair- ments, such as poor short-term memory, difficulty with concentration, difficulty learning new skills, and poor sensory integration, especially auditory processing (Anda et al., 2006). This process has been found to be more severe in both children and adults experiencing relational trauma, or trauma in- flicted by relatives (meso level), than those experi- encing trauma from inanimate objects (e.g., motor vehicle accidents) (Heller and LaPierre, 2012). This process is most damaging when the trauma experienced occurs early in life, and continues throughout childhood, causing an initial and pro- longed damage to normal brain development (Alisic, Jongmaks, Van Wesel, & Kleber, 2011; Anda et al., 2006). For family nurses, it is important to assess the start and duration of any family trauma occurring to a child or young adult.

Early Childhood Trauma Creates Understanding of Adult Trauma The impact of early trauma and the negative long-term outcomes has led to further study of the impact of childhood trauma on adult health. The Adverse Childhood Experiences Study (1996) provided landmark evidence that early trauma does indeed have negative consequences for adult health. This study was conducted as a collaboration between Kaiser Permanente and the Centers for Disease Control and Prevention (CDC), and entailed surveying 11,000 individuals across a decade, linking adverse childhood expe- riences with adult physical and mental health variables. The results revealed a relationship be- tween the number of adverse childhood experi- ences and the number of comorbid outcomes, including adulthood depression, panic disorder, substance abuse, sexual promiscuity, relationship problems, and domestic violence (Anda et al., 2006). Figure 11-4 illustrates the relationship be- tween adverse childhood experiences and adult comorbid conditions. The findings of this hall- mark study led to a more in-depth understanding of the cumulative effect of repeated and numerous

traumas experienced during childhood, and the effect on brain development.

Clearly, understanding early trauma and the neg- ative impact on children and development allows professionals to grasp better the impact of traumatic events on adults. Studies have found that resiliency is one factor that determines which adults will con- tinue to suffer from childhood trauma. Of interest is that the number of traumatic events is found to be consistently higher in men, but women have a higher incidence of PTSD following trauma. This is consistently true for civilian populations across geographical locations (Terleggen, Strebe, & Kleber, 2001). One theory is that women experi- ence sexual assault and traumatic abuse from male partners, supporting the idea that relational trauma is more traumatic and more difficult to cope with than inanimate or nonrelational trauma (Seedat, Stein, & Carey, 2005).

Resiliency Through the improved understanding of childhood trauma and related reactions, we now understand more fully the concept of resiliency, or why some who experience the same or similar event will adapt without any measure of physical or emotional dam- age, while others become severely and chronically

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FIGURE 11-4 Relationship between adverse childhood experiences and comorbid conditions. Adverse childhood experiences include verbal, physical, or sexual abuse, as well as family dysfunction (e.g., an incarcerated, mentally ill, or substance-abusing family member; domestic violence; or absence of a parent because of divorce or separation). (Source: Anda, Felitti, Bremner, Walker, Whitfield, Perry,...Giles [2006]. The enduring effects of abuse and related adverse experiences in childhood: A convergence of evidence from neurobiology and epidemiology. European Archives of Psychiatry & Clinical Neurosciene, 256, 174–186.)

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disabled. The term resilience for purposes of this chapter refers to individuals who (1) have been exposed to a significant threat or adversity, and (2) manifest positive adaptation, or absence of poor adaptation, in spite of the adversity (Luthar, Cicchetti, & Becker, 2000). Research has focused on identifying factors or characteristics that are consistently found in those individuals found to be resilient. The factors most commonly cited as re- siliency qualities include the following (Rutler, 1987; Williams, Lindsey, Kurtz, & Jarvis, 2001; Overland, 2011):

■ Social connectedness and positive supportive relationships

■ Competent parenting ■ Absence of mental illness in caregiver(s) ■ Easy to moderate temperament ■ High intelligence ■ Ego-resiliency, or the acquisition of a strong

sense of self across the life span with or with- out trauma (Philippe, Laventure, Beaulieu- Pelletier, LeCours, & Lekes, 2011)

■ Compassion ■ Optimism ■ Gratitude ■ Determination ■ Meaning and purpose in life ■ Caring for self and attuning to own needs ■ Trusting others to help ■ Internal locus of control ■ High self-esteem ■ Strong self-efficacy ■ Vicarious resiliency (Hernández, Gangsei, &

Engstrom, 2007)

Research on resiliency continues. For example, Philippe et al. (2011) investigated 118 clients from an outpatient clinic in Canada, and found that if ego-resiliency traits were present before a trau- matic event, then negative outcomes, including anxiety, depression, and self-harm, decreased by as much as 30%. While resiliency characteristics often precede the traumatic experience, this is not always the case. The question remains as to how to build resiliency in individuals facing trauma. Williams et al. (2001) completed an in-depth qual- itative case study to explore why some high-risk teens who had run away from traumatic homes fared well, whereas others fared poorly. These au- thors found that those individuals who developed resiliency traits after the trauma recovered faster

and shifted to a positive, goal-directed life. Re- siliency traits therefore should be assessed by family nurses to determine those that were present before the trauma, and reinforced, versus those that are lacking and need to be taught and supported. Re- siliency can buffer the negative impacts of trauma on the individual’s brain development.

FAMILY TRAUMA

Families experience trauma as a family and through individual members. This section discusses both (1) family trauma through disasters and war; and (2) individual experiences of trauma and their effect on family members. Each member of the family experiences trauma differently, with different symptoms, reactions, and needs for recovery. For example, both parents and children experience sim- ilar symptoms of PTSD, but adults are more likely to experience reexperiencing the event through nightmares and flashbacks, whereas children are more likely to avoid similar experiences (e.g., riding in a car after a car accident) or talking about the event. Both children and adults experience hyper- arousal, or the HPA axis response to stress (Heller & LaPierre, 2012). When this occurs, parenting often becomes overwhelming as children overreact to environmental stimuli, and parents overreact to the stressors of parenting. Each family member in turn can easily be misdiagnosed as depressed, anx- ious, or having attention-deficit hyperactivity dis- order (ADHD) and the opportunity for effective and comprehensive treatment is therefore lost. The National Center for PTSD (2010) has identified seven key areas that affect family functioning when one or more members are diagnosed with PTSD:

1. Increased sympathy by family members, which may provide support for the family member with PTSD or prolong feelings of victimization.

2. Increased negative feelings about the person with PTSD. These feelings are often trig- gered by changes in the person with PTSD, from changes in mood regulation, to depres- sion, to explosive outbursts.

3. Avoidance is a common reaction by individ- uals with PTSD and by family members. Family members often circumvent talking about anything related to the trauma, and

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may dodge other topics hoping to avoid angry outbursts. Individuals with PTSD tend to avoid social situations due to fear of not fitting in or being questioned about the trauma. This, in turn, leads to social isola- tion of all family members as they try to support the individual with PTSD.

4. Depression is common among individuals with PTSD and their family members. The longer the symptoms of PTSD last, the higher the risk for depression in family members.

5. Anger is common among family members, as they struggle to cope with changes in the person with PTSD and anger that expecta- tions are not being met.

6. Guilt is common for family members as they feel helpless to change negative family func- tioning and find themselves feeling angry about the individual’s illness.

7. Health problems increase in individuals with PTSD and their family members, including substance abuse, reduction in healthy immune response, and negative effects of poor eating habits, poor sleep, smoking, and lack of healthy exercise.

These outcomes can leave parents feeling inad- equate, and spouses feeling angry, guilty, and dis- illusioned. Nurses are often at the forefront of trauma care, as they encounter family members during traumatic events from war, natural disasters, family violence and abuse, and severe illness or unanticipated accidents.

Families Affected by War Since the turn of the century, the nature of war has changed dramatically. Warfare in the 21st century rarely involves confrontations between professional armies. Instead, wars typically are fought as grind- ing struggles between military personnel and civil- ians, or groups of armed civilians in the same country in a city environment rather than in distant battlefields. As a result, civilian fatalities from bat- tles fought in towns and cities have increased to 90% of the casualties of war in the 21st century, as com- pared to only 5% in the early 1900s. Worldwide, the caseload of refugee children has grown from 2.4 million in 1974 to 7.2 million in the past decade (Bridging Refugee Youth and Children’s Services,

2013). In the United States, the impact of war on families, other than for refugees, is limited to wartime separation and reunion.

Over time, serving in one of the branches of the U.S. military has become far less common. Since 2001, only 1.6 million veterans (or less than 0.05% of the population) have served in Afghanistan or Iraq, compared to the 16 million or 12% of the population that served in World War II (Meagher, 2007). Still, the consequences for family members of military personnel are often dire and long last- ing. Death, injury, and short- and long-term dis- ability of the veteran are stressors that can make life difficult for families (Cozza, Chun, & Polo, 2005; Rosenheck & Fontana, 1994). An increase in trau- matic brain injury sustained during war is associ- ated with physical health problems that are made worse by PTSD and depression (Hoge et al., 2008). Alarmingly, one out of every four people in the United States who commits suicide is a veteran (Glauber, 2007).

The deployment of thousands of family mem- bers during Operation Iraq has opened eyes to the effects of the traumas of war on families. This war resulted in 6,364 causalities and 48,296 wounded U.S. troops. Two million children were affected by separation from parents, changes in health status of parents, and/or loss of parents as a result of this war. Forty-four percent of these children were under 6 years of age, so were particularly prone to the effects of trauma from co-experiencing family trauma (Smith, 2013). As evidence of the difficulty these families face, the telephone calls to the 24-hour helpline Military OneSource, which pro- vides counseling to veterans and their families, numbered over 100,000 in the first 10 months of 2005; the calls increased by 20% in 2006. More than 200,000 antidepressant prescriptions were written for military families/service members over a 14-month period in 2005–2006.

Moreover, unidentified and untreated PTSD presented special risks for family reintegration and put the veterans and their families at higher danger for maladaptive responses to stress, such as alcoholism, depression, and family violence (Black et al., 2004; Bremner, Southwick, Darnell, & Charney, 1996; Dansky et al., 1999; Davis & Wood, 1999). Most soldiers, in particular, have transient symptoms of PTSD. These symptoms resolve for most when stability and routine is re- stored. This is the same pattern for children. But

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the risk for trauma-related symptoms in children from their parents’ traumatic experiences increases with prolonged separation from parent(s), and de- creased time between recovery from one traumatic event and to onset of another (i.e., repeated deploy- ment, or repeated terror associated with war) (Smith, 2013). Because of the increased under- standing of the risk of PTSD in family members, the military has funded numerous studies to iden- tify effective strategies to prevent PTSD in soldiers and their family members. One program, entitled Building Resilience and Valuing Empowered Fam- ilies (BRAVE Families), employs strategies used for families experiencing urban violence, Hurricane Katrina, and the World Trade Center terrorist at- tack. These strategies include individual and family education and support about PTSD, art and play therapy for children, parenting guidance, and group therapy and support (Smith, 2013). The goal of programs designed to reach PTSD at the meso level is to reach more families in a nonintrusive manner rather than waiting for families to experi- ence pathology first.

Family Violence and PTSD Family violence is generally divided into three categories: physical violence, emotional violence, and sexual abuse. The cause of family violence is well studied and is considered multifaceted, with influences ranging from multigenerational trauma (Hulette, Kaehler, & Freyd, 2011), social and cul- tural learning, mental disorders, and oppression (Abbassi & Aslinia, 2010).

Family violence is often both a cause and an out- come of PTSD in family members. Orcutt, King, and King (2003) examined the impact of early-life stressors, war-zone stressors, and PTSD symptom severity on partner’s reports of recent male-perpe- trated intimate partner violence (IPV) among 376 Vietnam veteran couples. The results indicated that several factors are directly associated with fam- ily violence, including relationship quality among the spouses, war-zone experiences of stress, and PTSD symptom severity. Experiencing PTSD symptoms as a result of previous trauma appears to increase an individual’s risk for perpetrating family violence. Risk for partner violence is considerably higher among veterans with PTSD when both low marital satisfaction and alcohol abuse-dependence are present (Fonseca et al., 2006; Taft et al., 2005).

Domestic violence also increases the risk for PTSD and is a cause for PTSD for both the victims and witnesses of the violence. The incidence of witnessing domestic violence and related trauma continues to be a major public health problem. In 2006, it was estimated that 29.4% of children in dual-parent homes lived in a home where partner violence was present. The risk to children is great, including physical injury from getting in the “cross-fire” to psychological distress similar to chil- dren experiencing direct abuse (Kitzmann, 2012). In a meta-analysis of 118 studies from 1978 to 2000 on witnesses of domestic violence, Kitzmann, Gaylord, Holt, and Kenny (2003) found that chil- dren experiencing parental domestic violence fared poorly in the areas of both internalized (i.e., with- drawal) and externalized (i.e., aggression) behaviors compared to controls 63% of the time, and had similar outcomes to those children experiencing direct abuse. Of interest is that the age of the child did not predict the degree of psychological distress, indicating that witnessing parental domes- tic violence is as dangerous for young children as it is for adolescents.

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Other family trauma also negatively affects the individuals within the family. For example, children experiencing divorce and abuse are at particular risk for later adult mental health disorders, including PTSD and depression. In a study of 5,877 individuals ages 15 to 54 years from the National Co-morbidity Study, Affi et al. (2009) found that children exposed to both divorce and abuse had the highest rates of mental health disorders as adults, particularly PTSD. A meta-analysis of 124 articles on long-term out- comes of children experiencing physical abuse or

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neglect found more depression, suicide risks, family violence, and substance abuse when compared with those not exposed to abuse and neglect (Norman et al., 2012). The experience of trauma, especially re- peated traumas, increases the risk of long-term neg- ative outcomes for children and adults. Each family member exposed to abuse, neglect, and major tran- sitions and loss, such as divorce, is at risk for PTSD, as well as continuing the cycle of violence within families (Hulette, Kaehler, & Freyd, 2011). These findings clearly support the need for family care and interventions by nurses and other health profes- sionals to prevent family-centered trauma.

Families Affected by Disasters Disasters are events that cause widespread destruc- tion of property, dislocation of people, and imme- diate suffering through death or injury. Disasters interrupt meeting basic daily needs for an extended time, causing suffering that cannot be addressed easily by those affected and making recovery diffi- cult (American Red Cross, 2003) for families. Dis- asters are classified as either natural or human caused. Natural disasters include weather and seis- mic events such as floods, hurricanes, and earth- quakes. Human-caused disasters include events such as fires, building collapse, explosions, acts of terrorism, or war. Acts of terrorism or violence include the use of chemical, radioactive, nuclear, biological, or explosive weapons that can cause great harm and stress.

across the world were killed by natural disasters (e.g. hurricanes, tornadoes, earthquakes, storms, tsunamis, and volcanic eruptions) (International Federation of Red Cross and Red Crescent Soci- eties, 2012). An additional 100,000 people were killed worldwide from technological disasters, ranging from industrial accidents to transportation accidents (International Federation of Red Cross and Red Crescent Societies, 2012). During the years 2004–2005, natural disasters killed 336,540 people in the world and further, over 300 million people were directly or indirectly affected by those disasters (International Strategy for Disaster Re- duction, 2006). In the United States alone during 2007, tornadoes killed 80 people, and thunder- storms and accompanying floods, lightning, winds, and hail caused another 157 deaths (National Se- vere Storms Laboratory, 2007). In 2011 the Disas- ter Relief Fund requested $1.95 billion in aid for families and individuals affected by such disasters (U.S. Department of Homeland Security, 2011).

Regardless of the type of event, families are af- fected in multiple ways when disasters strike. Some of the many stressors that occur include loss of significant others, injuries to self or family, separa- tion from family, or extensive loss of property (Norris, 2007). These losses result in heightened feelings of stress, with many families experiencing symptoms of acute and chronic PTSD.

Family Functioning and PTSD Trauma-related reactions leading to PTSD have a negative impact on family functioning. In a study of current relationship functioning among World War II ex-prisoners of war, over 30% of those with PTSD reported relationship problems compared with only 11% of those without PTSD (Cook, Riggs, Thompson, Coyne, & Sheikh, 2004). In Vietnam veterans, PTSD symptoms have been sig- nificantly associated with poor family functioning (Evans, McHugh, Hopwood, & Watt, 2003), and problems with marital adjustment, parenting satis- faction, and psychological abuse (Gold et al., 2007). The PTSD symptoms of avoidance and emotional numbing in particular have deleterious effects on parent-child relationship satisfaction (Samper, Taft, King, & King, 2004). Among Iraq and Afghanistan veterans, trauma symptoms such as sleep problems, dissociation, and severe sexual problems predicted lower marital satisfaction for

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Natural disasters are the most frequently occur- ring type of disaster. In the last 10 years, the Inter- national Red Cross reported that 1.1 million people

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both the veteran and his partner (Goff, Crow, Reisbig, & Hamilton, 2007). In their review of the literature on secondary trauma in the United States, Galovski and Lyons (2004) identified that veterans’ numbing and hyperarousal symptoms were especially predictive of family distress.

Secondary Traumatization and PTSD The impact of PTSD is not limited to the trauma- tized persons themselves. Spouses of the injured persons seem particularly susceptible to a phenom- enon called secondary traumatization (Dirkzwager, Bramsen, Ader, & van der Ploeg, 2005). Secondary traumatization has only recently been described and is not yet a diagnostic category in the DSM- IV (APA, 2000). In a study of Dutch peacekeeping soldiers and their families (Dirkzwager et al., 2005), it was found that partners of peacekeepers with PTSD symptoms reported more sleeping and so- matic problems, more negative social support, and judged the marital relationship as less favorable when compared to the general population. Another study in Israel found that spouses of veterans with PTSD suffered from higher levels of emotional dis- tress and a lower level of marital adjustment than the general population (Dekel, Solomon, & Bleich, 2005). In a qualitative study of wives of Israeli vet- erans with PTSD, Dekel et al. (2005) noted that the wives were carrying a heavy burden supporting and caring for their husbands and families; all of them identified personal symptoms of PTSD from hearing about their partner’s trauma and experi- encing the negative affects on their partner’s health. Partners of veterans with combat-related PTSD experience significant levels of emotional distress (Manguno-Mire et al., 2007).

This pattern is not limited to family members caring for veterans with PTSD (Devilly, Wright & Varker, 2009). Other studies have looked at non– family members. Thomas and Wilson (2004) re- ported that 7% of professionals working with traumatized victims experience symptoms consis- tent with PTSD. Other researchers have attempted to define this phenomenon, using terms including compassion fatigue, professional burnout, and secondary traumatic stress (Meadors, Lamson, Swanson, White, & Sira, 2009; Newell & MacNeil, 2010). Each definition describes the psychological and physical response to caring for victims but not directly experiencing trauma. Meadors et al. (2009)

studied 167 professionals working in pediatric in- tensive care units. They found a significant corre- lation between compassion fatigue, or secondary traumatization, and symptoms of PTSD. Nurses, physicians, social workers, and chaplains described the difficulty of caring for families who had a child severely ill, injured, or dying. These professionals not only heard about the traumatic event repeat- edly from families, but witnessed the traumatic events over and over as they cared for families across time. This witnessing of trauma led to sec- ondary traumatization.

Prevention is the goal with primary treatment of potential PTSD; several programs start interven- tions at the time of the traumatic event within a family rather than waiting for symptoms to develop (Skelton, Loveland, & Yeagley, 1996). Outcomes improve with a combination of individual and fam- ily therapy, along with appropriate medication management of symptoms when needed. In a study of seven children following a bus accident, the combination of individual and family therapy with selective serotonin reuptake inhibitors (SSRIs) re- sulted in a remission of PTSD symptoms, whereas the control group who only received medication still had symptoms 3 months later (Stankovi_ et al., 2013). In the cases where medication and family therapy was used, researchers used Systematic Family Therapy (SFT), a structured family therapy protocol, to facilitate family involvement and fam- ily directed interventions. It proved effective in preventing chronic PTSD in victims.

COMMUNITY AND TRAUMA

The community response to trauma can have a major impact on the degree of PTSD experienced by individuals, families, and the community as a whole. The community has a key role in the pre- vention and treatment of trauma. Child welfare services often respond to threats of trauma from abuse and neglect, and police services often re- spond to threats of domestic or community vio- lence. Hospitals are critical in the immediate treatment of physical and psychological trauma, and private and community or county mental health services are at the forefront in leading every community through prevention and treatment of trauma (Gard & Ruzek, 2006). These agencies each have a responsibility to be trained for their role in

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trauma care. For example, if child welfare workers are not properly trained on trauma, they may not support foster parents in appropriate reactions to children with trauma-related behaviors. This lack of support may lead to placement failure, and result in children being retraumatized by multiple inter- ruptions in attachment, initiating a dangerous cycle (Richardson, Coryn, Henry, Black-Pond, & Unrau, 2012). Table 11-2 presents responses to questions regarding exposure to trauma, as a training guide for health care professionals.

Consider the following scenario: A 13-year-old child, who is recovering from PTSD resulting from sexual abuse by her father, is placed into foster care. During counseling, she is encouraged to retreat to a quiet place when stimulation from the crowded foster care becomes too much. Due to lack of train- ing, however, her foster mother punishes her for “being too isolated.” When she goes to school, she becomes overwhelmed by fear, and retreats to the library to regain her homeostasis. Because her teachers are untrained and unaware of her needs, she is again punished. She begins to distrust her counselor, foster parent, and teachers, and relapses into fear, disconnection, and dysregulation. She retreats back into rigid boundaries. This short vignette illustrates the importance of educating community-based service providers to understand trauma, and to integrate and collaborate services to

promote positive rather than dangerous and nega- tive outcomes.

SYSTEMIC TRAUMA

The symptoms of PTSD cross individual, family, and community boundaries. Many argue that the United States of America is suffering from PTSD from repeated traumatic events such as wars, natu- ral disasters, and economic traumas across time without resolution or intervention. This has re- sulted in a nation with PTSD symptoms, including depression, intrusion of unwanted and negative thinking patterns, hyperarousal especially to per- ceived threats from others, and related health de- cline. One clear symptom of this premise is the decline in the general health of U.S. citizens, not unlike the health of individuals suffering from PTSD. We possess the shortest life span of any in- dustrialized nation, with almost half of American adults struggling with hypertension, high choles- terol, diabetes, or all three. Further, more than one-third of adults and children are obese (U.S. Department of Health and Human Services, 2012). We are seeing increasing numbers of individuals with stress-related disorders, stemming from or causing mental illness, substance abuse, and domes- tic violence. Infant mortality is dismally high, with the United States rate ranking highest among the top seven industrialized countries of the world (U.S. Department of Health and Human Services, 2012). Child abuse rates are equally high when compared with other nations (U.S. Department of Health and Human Services, 2012). One-quarter of our nation’s children take prescription medica- tions. One-fifth of our nation’s children have been diagnosed with a mental health disorder (Hensley, 2010). Twenty-six percent of all children in the United States will experience or witness a traumatic event before they reach age 4 years (Substance Abuse and Mental Health Services Administration, 2011). These statistics show symptoms of a country experiencing dysregulation and systemic trauma.

The high obesity rates in the United States are a clear example of a nation experiencing dysregu- lation and fear. Obesity is growing the fastest in our poor and crowded neighborhoods. The lack of healthy foods, safe neighborhoods that support outdoor activity, high levels of stress, and presence of early and repeated trauma are key factors in

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Table 11-2 Responses to Questions Regarding Exposure to Western Trauma Discourse

Have you ever attended workshops or trainings about how people are affected by extremely frightening or traumatic events?

Never: 85.9%

<1 day: 7.7%

<2 days: 1.3%

2 days: 1.3%

2+ days: 3.8%

Have you ever listened to radio programs/read literature about how people are affected by extremely frightening or violent events?

Never: 19.2%

1–2 times: 16.7%

3–4 times: 39.7%

4+ times: 15.4%

7+ times: 9.0%

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causing obesity and related chronic health condi- tions (Karr-Morse & Wiley, 2012). Yet, the re- sponse to obesity is not centered on trauma-related interventions, but instead on unsuccessful dieting and major surgeries.

Another indicator that the United States as a nation is struggling with PTSD is the increasing rate of substance abuse. Although nicotine addic- tion is at an all-time low, addiction to other sub- stances, such as alcohol and opiates, is increasing at an alarming rate (National Institute on Drug Abuse, 2012). Researchers have found that those struggling with food cravings leading to obesity, and those struggling with drug addiction, both ex- hibit decreased dopamine levels. Overeating and drug use temporarily raises dopamine levels. A lack of dopamine, particularly in the frontal cortex, is caused by early trauma more often than genetics (Karr-Morse & Wiley, 2012). A country experienc- ing repeated trauma without resolution quickly fills with individuals, families, and communities highly stressed and traumatized, with resulting increase in stress-related disorders. Chronic stress is toxic stress. Toxic stress, as defined by the Center on the Developing Child at Harvard University, is when an individual experiences strong, frequent, and pro- longed stress such as chronic child abuse or neglect, without adequate support (Center on the Develop- ing Child, 2012). Toxic stress interferes with the ability to learn, be creative, stay healthy, and have joy. Countries that experience toxic stress through natural disasters, war, or dysregulation of major systems also experience a drop in the ability to learn, be creative, have healthy citizens, and have joyous outcomes. Robin Karr-Morse and Meredith Wiley, the authors of Scared Sick: The Roles of Childhood Trauma in Adult Disease (2012), compared our body’s response to stress to the U.S. Depart- ment of Homeland Security. Both systems are aimed at a complex and integrated system that maintains safety. When part of that system is over- taxed or disconnected, safety is threatened. Threats to the larger system, whether real or imagined, can further overwhelm the system and lead to disease.

The greater culture and societal laws and poli- cies can influence the incidence and the treatment of trauma. Countries riddled with war, poverty, and disease have higher incidents of PTSD, whereas countries that support policies that decrease violent solutions to problems, provide broad access to pre- ventive and primary health care, and decrease

poverty have lower incidences of PTSD. For ex- ample, the incident of PTSD in New Zealand is estimated to be 6.1% of the population (U.S. Department of Veterans Affairs, 2007), whereas the incident of PTSD in the Gaza Strip was found to be 70.1% of 9- to 18-year-olds exposed to the ongoing Israeli-Palestinian conflict (Thabet & Vostanis, 2000). The extent that countries can prevent and/or treat the causes of PTSD early clearly in- fluences the health of the citizens in every country.

Many argue that the traumatic events experi- enced over the course of the last two decades in the United States were too rapid to resolve and caused a chronic state of fear in the country. For example, in 2005 the United States experienced Hurricane Katrina, continued involvement in the Iraq war, economic collapse, raging wildfires in California, a severe snowstorm in New England, and a school shooting. U.S. citizens watched these disasters un- fold with little support or education on how to process these events to avoid symptoms of PTSD. Today, many talk about feeling numb to the disas- ters watched on television, and have increased fear related to travel, economics, and routine activities, such as attending school. The treatment of PTSD needs to expand beyond individuals, families, and communities, and include national and international traumas and the impact on a nation as a whole.

NURSES AND TRAUMA

Nurses are key in helping with the diagnosis and treatment of PTSD in individuals and families. Their presence at the forefront of emergency care of vic- tims of trauma, and their help throughout the healing process renders nurses important members of the in- terdisciplinary team that prevents, treats, and evalu- ates care for PTSD. This section outlines the nurse’s role in the prevention, identification, and treatment of PTSD as part of an interdisciplinary team.

PTSD Nursing Assessment and Intervention PTSD can develop after a traumatic event or events at any age. To be diagnosed with PTSD, certain conditions must exist. The person has to have been exposed to a traumatic event; experience intense feelings of fear, helplessness, or horror (for preverbal children, the feelings of helplessness are

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commonly seen as withdrawal, and feelings of fear are commonly seen as intense emotional arousal); reexperience the event through flashbacks, dreams, or disturbing memories; avoid any stimuli associated with the event, avoiding any reminders, thoughts, or feelings about the event; be hypervigilant; have difficulties falling or staying asleep; have an exag- gerated startle response; and the symptoms must have lasted longer than 1 month and must cause significant distress or impairment in functioning (National Center for PTSD, 2010).

It is the role of nurses to assess for symptoms of PTSD. There are simple methods to screen patients who may have undetected PTSD. One easy to use tool is the Primary Care PTSD Screen (Prins et al., 2004), which consists of four questions preceded by the following introduction:

“In your life, have you ever had any experience that was so frightening, horrible, or upsetting that, in the past month, you...

1. Have had nightmares about it or thought about it when you did not want to?

2. Tried hard not to think about it or went out of your way to avoid situations that reminded you of it?

3. Were constantly on guard, watchful, or easily startled?

4. Felt numb or detached from others, activities, or your surroundings?”

The screen is positive if the patient answers yes to any three items.

It is also important for nurses to assess risk factors and provide families with protector factors, or positive coping strategies and enhancement of resiliency characteristics (Friedman, 2006; Warner, 2010). See Box 11-1 on vicarious trauma.

Risks Associated With PTSD There are a number of risks and risk factors asso- ciated with both adult and child PTSD of which nurses should be conversant:

■ Suicidal risk—due to feelings of numbness, disconnect with support people, chronic fear and anxiety, and feelings of hopelessness and helplessness.

■ Danger to others—ask about firearms or weapons, aggressive intentions, feelings of persecution.

■ Ongoing stressors—such as changes that have occurred at home, marital discord, problems at work.

■ Risky behaviors—such as risky sexual adven- tures, nonadherence to medical treatment, substance use and misuse.

■ Personal characteristics—past trauma history, coping skills, relationship attachment.

■ Limited social support—the individual’s lack of willingness to accept help and inclination to isolate.

■ Comorbidity—coexisting psychiatric or medical problems such as depression and chronic widespread pain (CWP).

Child risks associated with PTSD include the following:

■ Dysregulation—unpredictable or irregular sleep and eating patterns, and difficulty regu- lating moods and emotional responses.

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BOX 11-1 Vicarious Trauma

Trauma clearly transcends individuals, families, communi- ties, and greater societies across time and across cultures. Nurses are often the front-line professionals to identify and intervene when acute and chronic trauma occurs. A real risk for nurses is the development of the attunement survival style described by Heller & LaPierre (2012). This style of coping is characterized by attuning to other’s needs and neglecting one’s own needs, which is an apt description of the lived experiences of many nurses. If nurses identify themselves as givers, yet neglect their own needs, they are at a high risk for vicarious trauma, or the development of PTSD symptoms from caring for or witnessing trauma in others. This condition is also re- ferred to as compassion fatigue and secondary trauma in the literature (Afifi et al., 2009). This term has evolved as helping professionals were identified as being at high risk for negative psychological reactions to their job, with early descriptions of burnout. Symptoms of burnout in- clude feeling overwhelmed, hopeless, helpless, and un- appreciated. Motivation is lost, and if unrecognized and untreated, it may lead to depression, loss of job, and, in the long term, early death (Smith, Segal, & Segal, 2012). Although burnout can be caused by repetitious and unin- spiring work, it can also be caused by vicarious trauma. Prevention of vicarious trauma is possible through edu- cation, avoiding professional burn-out, and professional and peer support during and after caring for traumatized patients (Trippany, White Kress, & Wilcoxon, 2004).

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■ Poor connection—difficulty forming or maintaining relationships, with a tendency to be alone, have poor eye contact, and resist connection with others.

■ Poor cognitive development—difficulty with attention, short-term memory, problem solving, creativity, and play. High incidence of learning disabilities, particularly auditory processing disability.

■ Poor attunement skills—difficulty recognizing and asking for needs.

■ Inability to trust—difficulty forming relation- ships, oppositional behavior, sleep problems.

■ Hyperarousal—increased response to envi- ronmental stressors or memories, with rage, anger, or severe anxiety.

The best evidence-based nursing treatments for the individual with PTSD include both psychother- apeutic interventions—such as cognitive-behavioral therapy and family therapy—and medications, pri- marily SSRIs (Friedman, 2006; Herbert & Forman, in press; Herbert & Sageman, 2004). Partner and family engagement in PTSD treatment has been shown to improve the treatment outcomes. Predic- tors of partner engagement include higher income, patient-partner connection, and lower partner care- giver burden (Sautter et al., 2006).

Secondary Family Traumatization Assessment and Intervention To help the traumatized family, the nurse should first realize that traumatized families rarely seek family-focused intervention. Instead, they often present with problems that are not immediately re- lated to the traumatic events they have experienced (Figley & Barnes, 2005). Nurses should learn the parallel processes of individual and systemic stress reactions that follow a traumatic event. Figley and Barnes (2005) offer suggestions to help clinicians recognize family responses to traumatic events and offer some interventions to help patients and families affected by these events. For example, fam- ilies are affected by the individual’s symptoms of PTSD. They know the story of the trauma, witness the symptoms, and want to help in some way. As a result, the family spends more and more time car- ing for the traumatized member. Moreover, while the traumatic event is being persistently reexperi- enced by the exposed family member, the other family members are responding to this individual’s increased demands for support. As the primary

affected family member tries to avoid stimuli and reminders of the trauma, the other family members must devote increased time, energy, and problem solving to avoid conversations, people, places, and things that might stimulate memories. They have to tolerate the withdrawal and numbing that goes along with the primary affected family member’s diminished interest in usual activities, refusals to see friends, and inability to express love and caring. The family becomes increasingly more isolated. The other family members have to manage prob- lems with sleep, outbursts of anger and rage, exag- gerated startle responses, and hypervigilance about safety. These factors increase the risk of secondary traumatization, or symptoms of PTSD in family members from witnessing the traumatic stories and the negative impact on their family member. Secondary traumatization is considered acute if the duration is less than 3 months, chronic if the dura- tion is 3 months or more, and delayed if the onset is at least 6 months after the stressor.

Nurses Applying the Ecological Systems Theory Approach to Trauma Treatment Treatment of trauma begins with the treatment of interrupted trust and attachment (Heller & LaPierre, 2012). Infants and young children who experience rejection and abuse early in life often expect that same experience from present and future caregivers. A trusting and therapeutic rela- tionship must form. This process is slow, as the child or adult who has learned to avoid feelings and relationships will first resist, and then struggle with moderating those feelings and relationships, and then, if successful, learn to trust. The initial steps of treatment are as follows:

1. Move slowly: building connections can be terrifying to a traumatized individual.

2. Build trust: building a therapeutic relation- ship depends on being predictable and trustworthy.

3. Be empathetic: you may be the first kind person in their lives.

4. Help children and adults listen to and explore their new skills at identifying emotions, or- ganizing thoughts and emotions, and learn- ing different reactions and responses to their emotions.

5. Help build self-esteem through teaching top-down thinking. For example, if an adult has always felt he was bad because of

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traumatic events in his life, help him rethink about the events being bad instead.

6. Gradually support and encourage connection with their own feelings, then their body re- sponses and reactions, and finally connection to other people. The connection to other people should also be gradual, starting with close caregivers or family members, and advancing as tolerated to outside peers and associates.

7. Be available to help the child or adult ex- plore feelings of rejection, anger, abandon- ment, and fear. Many individuals who have experienced trauma have survived by be- coming numb. As this numbness fades, sur- vival feels threatened. During this transition from numbness to feeling, many may with- draw for varying periods of time. A thera- peutic nurse will recognize this pattern and avoid judging the traumatized individual during these phases.

The nurse working with a traumatized family needs to explore each family member’s perception of what happened both before and after the event (Figley & Barnes, 2005). The family may block the telling of trauma if the family was the cause of that trauma. Listening to individuals and observing for signs of secondary trauma can be critical to getting help for all family members. The nurse needs to recognize that the family’s worldview will have been altered by the traumatizing events and that its attitudes and beliefs may shift from safety to suspi- cious, distrustful attribution regarding the motiva- tions of others, including helping professionals. Hypervigilance and controlling behaviors may ac- tually interfere with the family getting the help it needs. In addition, if the stressors impinging on the family go unattended, a pattern of triangulation and blaming may become the central family dy- namic. Also, the roles in the family may shift, with some members becoming more enmeshed with the traumatized member, and others withdrawing from the family system. Children may have to take on the role of emotional caretaker for the parents and thus be compelled to hide their own feelings and fears, while other siblings act out to express anger, leading to more parenting stress. Most emerging trauma treatment has as its main shortcoming the focus on the individual rather than the family sys- tem. Careful implementation of interviewing tech- niques and the exploration of the family life

experience through ecomaps will assist nurses to access the complex relationships and characteristics of families living with trauma or post-traumatic complications.

The nursing role also includes looking at com- munity actions and societal responses to trauma at a personal, family, community, and societal level, and how that trauma affects health. Becoming in- volved with prevention strategies, such as commu- nity preparedness for disaster, can lead to improved community health. Working with national organi- zations to provide organized community-based in- terventions for traumas can be an important step to preventing negative long-term consequences. Par- ticipating in research and implementing research findings that demonstrate the impact of trauma on all ecological levels can help improve treatment plans and outcomes. Finally, shaping policies at the national level that support families in need, by decreasing poverty, improving access to health care, supporting parents with improved child care options and improved parenting education and sup- port, and reducing environmental stress, can be an important step to reducing PTSD in children, adults, families, communities, and nations.

Case Study: Knoll Family—An Ecological Approach

This case study offers an example of a family that experi- enced trauma, and the impact of individual trauma and family trauma on all family members. The events that occurred within this family illustrate the complexities of prolonged stress, pile-up of stressors, risk factors, and resiliency characteristics touching the individual, family, community, and nation.

Family Members: • Mother: Emma (age 45) • Father: Peter (age 46) • Oldest daughter: Ignes (deceased at age 11 years) • Oldest son: Jason (age 14) • Youngest son: Bradley (age 12)

Figure 11-5 shows the Knoll family genogram. The Knoll family has experienced a number of losses

and trauma over the past 5 years. This family lives in a low-income trailer within a trailer park. The neighborhood is run-down, but considered safe. The parents are currently divorced, and the father visits once a week for 2 to 3 hours.

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The family is white, non-Hispanic and the religion is Seventh Day Adventist. Because of the family’s low income, family members have state-provided health care insurance, limit- ing access to mental health care to 30 minutes per week. Although county mental health care services are available in the community, the waitlist is over 6 months, and ex- perts on family trauma are not currently available. Because of this, the family has sought mental health care and med- ication management for family members at a private family care clinic specializing in trauma.

Family Development: The mother Emma has a history of learning disabilities and anxiety. Although she denies any stress in her childhood, and describes her parents as stable and loving, she experi- enced a series of traumas starting 5 years ago. The first trauma was the diagnosis of a severe anemia (Diamond Blackfan anemia) in her 11-year-old daughter. Although the doctors felt her daughter’s prognosis was good, she died from complications following a bone marrow transplant. Because of the intense and traumatic nature of this event, the father left the hospital before his daughter died, and did not return to the family for 2 years. He stated he could not handle his grief at her death, and just wanted to “run

away” and not think about it. His abandonment led to the family losing their home to foreclosure, as the mother had never held a job outside of the home, and she was left with severe grief and the responsibility of caring for her two other children. Her two sons both had the diagnosis of autism, moderate mental retardation, and severe mood disorder. She felt immediately overwhelmed, and felt she had to find a partner to help her.

She met a man at her church. Unfortunately, he raped her during their third date. Her symptoms of PTSD started after this sexual assault, including flashbacks, severe anxiety, hyperarousal, and avoidance of friends and family members. Three months after the rape, she started dating a second man, whom she met on-line. This relationship was unstable, with episodes of verbal abuse, and frequent abandonment from weeks to months. In spite of this instability, the mother married this man. She divorced him 9 months later due to his abandonment back to the East Coast. She then met a third man on-line, and started dating him. The relationship went well for several months, leading to her decision that she would allow this new man to move into her home. He was initially very helpful with her sons. Soon, however, he revealed that he had been diagnosed with bipolar disorder, and could not afford his medications. He had a manic

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Bradley 12 yr

Severe mood disorder Aggressive rage attacks

Special education

Jason 14 yr

Delayed mentally Autism

Mood disorder Rage attacks

Ignes Died @ age 11 in 2008

Emma 45 yr

Learning disabilities

Anxiety

Peter is to be 46 yr

Bipolar Anxiety

FIGURE 11-5 Knoll family genogram.

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episode, which included domestic violence and “rage at- tacks” toward the mother and her two sons. She kicked him out, and has now remained single for several months.

The oldest son (14) is developmentally at the first-grade (6-year) level in all areas except art, at which he excels. He struggles with dysregulation of moods, inattention, poor short-term memory, impulsivity, and intermittent rage attacks resulting in aggression toward his mother and destruction of property. These rages occurred up to three times per day without medication, but less than once per month on med- ication. He is currently taking Abilify 15 mg, Straterra 25 mg, and Zoloft 75 mg. He also takes hydroxyzine up to 50 mg as needed for severe agitation and anxiety. He currently receives special education services through the school district and is placed in the Life Skills Program. He can read simple books, write three- to four-word sentences, and participate in age- level choir and art classes. He currently states that he has no friends at school or in his neighborhood. He spends his free time drawing, watching television, or playing video games.

The younger son (12) is developmentally at the fifth- grade (10-year) level in all areas. He struggles with dysreg- ulation of moods, inattention, poor short-term memory, impulsivity, and intermittent rage attacks resulting in aggres- sion toward his mother and brother, and has in the past threatened his mother and brother with a knife. These rages occurred up to three times per day without medica- tion, but less than once per month on medication. He is currently taking Abilify 15 mg, Topamax 50 mg twice daily, Straterra 18 mg, and Zoloft 50 mg. He also takes hydrox- yzine up to 50 mg as needed for severe agitation and anxiety. He currently receives special education services through the school district and is placed in the Life Skills Program. He can read chapter books, write three- to four- paragraph stories, and participate in age-level choir and music classes. He currently states that he has no friends at school or in his neighborhood. He spends his free time reading, watching television, or playing video games.

The father currently works full-time at a grocery store as a clerk. He has been diagnosed with bipolar disorder and anxiety. He does not take any medication, resulting in manic episodes an average of once every 2 years, evi- denced by increased interest in pornography, insomnia, and running from his current situation. In between these manic attacks, he is functional and well regarded at work and at church. He currently has a girlfriend who lives 200 miles away. He visits her every weekend. He pays $350 per month for child support.

Function: Emma assumes the role of primary caregiver of her two children. Her mother, an 83-year-old woman in good

health, however, provides daily support, including caring for the two boys and helping with housecleaning. The grand- parents also provide regular financial assistance, as child support payments are sporadic. Emma makes all decisions regarding finances, parenting, and leisure activities. Peter has very few roles within the family, as he inconsistently assists with finances, and only participates in parenting 3 hours per week. He allows Emma to make all decisions. The two boys are expected to participate in school and to help with chores within the home. Both boys neglect their chores, and the mother also dislikes housework, leading to the home being messy and disorganized. Child Welfare Services has been called due to the disarray of the house, which led to some community support, including assis- tance with painting, fixing the bathroom, and cleaning and replacement of the carpet.

Communication within the family started out as distant and emotionally abusive. Through intensive counseling and parent coaching within the clinic and through home visits, the family now participates in healthier communica- tion patterns, nonviolent problem solving, and shared positive experiences. Each family member, however, con- tinues to show signs of chronic PTSD, due to repeated and severe traumas within the family. When asked about adverse events, the mother summarized the events as follows:

• The diagnosis of autism in her oldest son. • The diagnosis of autism in her youngest son. • The diagnosis of Diamond Blackfan anemia in her

daughter, with resulting death of her daughter. • The loss of her husband and divorce. • The loss of her home and the dependence on her

parents for financial support. • The sexual assault during a date (i.e., “date rape”). • The difficulty finding adequate health care for herself and

her children. • The difficulty finding adequate educational services for

her sons. • The abandonment by her second husband. • The domestic violence by her domestic partner.

Emma was asked about resiliency skills for both herself and her sons. She felt she had positive support through her parents, a strong religious affiliation including daily prayer, the absence of any substance abuse, and the ability to adapt to the many changes and traumatic events occur- ring in the last 5 years. She noted that her sons were her support as well as her burden. She stated that they both were very adaptable at times to big changes, but could not

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tolerate small changes, such as changes in the schedule. Resiliency areas where this family lacked included: optimism, self-efficacy, low cognitive function for all family members except the grandmother, ability to participate in healthy self-care (i.e., the family had poor nutrition, never exer- cised, and had limited social support), and lack of trust of helping professionals due to negative involvement of Child Welfare Services.

Nursing Interventions:

Microsystem: The individuals within this family needed a thorough and comprehensive assessment of symptoms of PTSD given the history of repeated and prolonged trauma and caregiving overload. The mechanism of prolonged stress for the two sons could have started in early child- hood, given their symptoms of mood dysregulation, atten- tion-deficit disorder, rage, and cognitive impairment. Through a careful assessment, it was determined that both boys had experienced neglect during the first 4 years of their life, as mother described feeling depressed and over- whelmed by parenting responsibilities. She admitted that she would leave both boys alone for hours while she slept, with this pattern going on for days. She was not evaluated for or diagnosed with depression, but she stated that she lacked energy, motivation, or ability to care for her sons, and often felt resentful toward their care. While her 11- year-old daughter helped at times, she was at school or with friends a majority of the time until her illness was di- agnosed. After this point, the mother devoted all of her available energy to her daughter’s care. After the death of her daughter, she once again retreated to bed most days until she started counseling.

The understanding of each of the individual’s experi- ences and related traumas helps the nurse identify the need for individual care for each family member. The boys started with individual counseling utilizing play and art therapy. They soon built a trusting relationship with the therapist, and learned across time to become more attuned to their own needs, learned to ask for their needs appropriately, and to regulate their responses to emo- tions. Their cognitive abilities improved from being years behind grade level to being considered “low normal” in their academic skills. Medications were adjusted to help both boys regulate moods, concentrate when needed, and to have regular sleep, eating, and digestive patterns. Meanwhile, the mother and father received individual counseling and medication management to address their symptoms of PTSD, and both received parent counseling and coaching.

Mesosystem: Family-centered care was instituted imme- diately to improve family development and functioning. Family self-care strategies were initially implemented to sta- bilize and organize the family, followed by family meetings to address communication skills, problem-solving skills, and to build positive connections between and among family members. During the family meetings, the family also discussed grief, including the loss of the daughter/ sister, loss of the marriage, and loss of the family home and related stability.

Macrosystem: This family struggled with finding sup- portive community resources. See Figure 11-6, the Knoll family ecomap, which depicts the subsystems. While fam- ily members were devoted to their religion and sought support through this community service, the church would not allow the family to attend services due to the boys’ disruptive behavior. When the church refused to baptize the youngest son due to his autism, the family left this church. They are currently seeking a new church to join. The mental health care services were at first difficult to find because of the long waitlist and lack of appropriate specialist to manage this family’s care at the county men- tal health clinic. Private services were found, however, and these services helped this family gain the support it needed to thrive. Private services were funded through the state insurance program, ensuring health care for all children. The school system was equally frustrating, as it struggled to communicate with the mother about approaches to the boys’ behavior and learning deficits. Supplemental services, including the use of an autism specialist, occupational therapist, counselor, and speech therapist, helped improve the boys’ academic and cogni- tive abilities. Child Welfare Services, while trying to im- prove the home environment, ended up increasing mistrust of helping professionals through their unneeded threats. This outcome is consistent with studies showing that if community agencies are not well trained in trauma, the interventions may cause more harm than good (Richardson et al., 2012).

Exosystem: This family was affected by societal rules, culture, and policies. The availability of health care through the state allowed services to this family, but lim- ited those services to brief weekly contacts. The system also allowed for free public education for the boys, which assisted in their cognitive and social gains. The exosystem also resulted in the family being part of a culture of trauma, with an inability to escape poverty and poor housing, and, because of lack of access to healthy foods

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and poor preventive health care, an increase in trauma- related health problems, including obesity, high choles- terol, and hypertension in all family members. The exosystem problems were addressed by increased aware- ness of risks, increased support of prevention behaviors, and referral to services that counteracted negative exosys- tem practices and policies.

Outcome Following Treatment: Following 5 years of treatment, this family is no longer demonstrating symptoms of PTSD. Each family member is experiencing positive connections within and outside the family, stable housing, and improved nutrition, with

Trauma and Family Nursing 343

Strongly attached

Moderately attached

Slightly attached

Tension

Private family

care clinic

Church

Speech therapist

Occupational therapist

Child welfare services

Trailer court

Maternal grandfather

Maternal grandmother

Mental health

services

State health

insurance

Emma 45 yr

Bradley 12 yr

Jason 14 yr

Peter

Special education

Direction of energy flow

FIGURE 11-6 Knoll family ecomap.

resulting improved health, and improved cognitive functioning. The family is better connected to the com- munity, and less resentful regarding social policies and practices that were unhelpful. During this 5-year time period, the family worked with the same nurse and interventions focused on ongoing family assessments, care coordination to facilitate better relationships across the family care–provider ecology, improving family com- munication and closeness through the use of rituals and routines, and individually targeted development of resiliency characteristics based on trauma-related care evidence.

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344 Families Across the Health Continuum

Eileen 43 yr

Secondary PTSD

Paul 47 yr

• Currently unemployed • National Guard was

deployed to Iraq now home

• Insomnia • Back pain • PTSD

John 14 yr

Kira 16 yr

High school Secondary PTSD

High school Secondary PTSD

FIGURE 11-7 Caldwell family genogram.

Case Study: Caldwell Family Mr. Caldwell, a 47-year-old National Guard soldier, in the hos- pital for a hernia repair, had returned home from a 12-month deployment to Iraq, where he had his first exposure to com- bat in his 18 years of National Guard duty. Before deploy- ment, he worked successfully as a fireman paramedic and was a happily married father with two children. He and his wife were socially outgoing with a large circle of friends from the same rural area in which they both grew up. They have been married since high school. See a genogram and ecomap for the Caldwell family in Figures 11-7 and 11-8.

While in Iraq recently, Mr. Caldwell had extensive expo- sure to other soldiers’ combat injuries as the noncommis- sioned officer in charge of the battlefield medical aide station. His unit treated the severe, crippling injuries of soldiers en route to the trauma hospital. The aide station was often overrun with multiple casualties. He treated sol- diers from patrols and convoys in which improvised ex- ploding devices destroyed vehicles and wounded or killed people. Although he did not have to kill enemy combat- ants, he agonized that he may also have been responsi- ble for the deaths of some soldiers because he simply did not have enough men or resources to treat all of the casualties adequately. When asked about the worst mo- ment during his deployment, he readily stated it was when he was unable to intercede, while a Humvee with a bleeding soldier draped over the hood and several wounded soldiers in the back drove by the aide station, because the driver’s view was blocked by blood gushing

on the windshield and could not see him waving the Humvee to safety.

When he first returned home, things seemed to be okay. But more than 2 years after coming home, he has had more and more difficulty relating to his wife. He reports feeling angry all the time, that no one will listen to him. Sleep has become difficult. He has to sleep on the recliner in the living room because his back hurts so badly that he cannot lay flat. When he does sleep, he has a recurring, vivid nightmare about turning a corner outside of a building in Baghdad where he encounters an insurgent with a rifle who shoots him. His daughter complains that he has be- come so overprotective that he will not let her go out with any friends, much less any boys. His wife reported that he has been emotionally distant since his return. His employer, who initially supported him, has reported that his work at the fire department has suffered dramatically. During a re- cent burning motor vehicle extradition drill, one of the car’s tires exploded. The unexpected explosion rattled him so much that he became unable to go to work anymore. Mr. Caldwell says that since his deployment, he no longer has an identity—he cannot work, and he no longer feels like he can fulfill his obligations as a husband and a father. He reports that he sometimes experiences strong surges of anger, panic, guilt, and despair and that at other times he has felt emotionally dead, unable to return the love and warmth of family and friends. He does not want to get a divorce, but fears this will happen. Although he has not been actively suicidal, he reported that he sometimes

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thinks everyone would be better off if he had not survived his tour in Iraq. He is currently on a number of medications for back pain from his on-the-job injury at the fire depart- ment. He is complaining of a lot of postoperative pain.

This composite case illustrates several kinds of war- zone stressors. Mr. Caldwell felt helpless to prevent several deaths. In addition to that feeling of helplessness, he had to witness the horror of many people dying, and had to respond to emergencies on a very unpredictable basis. Nurses, who are taking care of patients who have had a difficult return to civilian life, need to be aware of the com- plicated nature of readjustment. As this case illustrates, the prevalence of PTSD may increase considerably during the 2 years after veterans have returned from combat duty (Wolfe, Erickson, Sharkansky, King, & King, 1999).

This family is dealing with the chronic problems that occur when a veteran returns home with significant PTSD. The care for this family, when delivered from a Family Systems Theory perspective, will need to address Mr. Caldwell’s PTSD, as well as the family’s ever increasing secondary traumatization from his stress responses.

Theoretical Perspective: Using a family systems theoretical approach, plan care for Mr. Caldwell that includes referral for his PTSD, and pro- vides the family members with education and resources about what they can do to address their own secondary trauma, as well as support his recovery. As part of the plan, the nurse can help the Caldwell family by drawing a family ecomap that shows resources currently being used.

Because Mr. Caldwell has been traumatized by his ex- perience with war, ultimately all of his family members and family relationships are affected. Mr. Caldwell’s war experi- ence was his alone, but his wife is being affected by the symptoms he is experiencing, symptoms that will get worse as she takes on even more of a caregiving role following his surgery. The children are baffled by the changes in their father, and do not know quite what to do. Because Mrs. Caldwell is so involved with caring for him, the children do not feel like they can go to her with their problems. In addition to their parents not being available to them

Trauma and Family Nursing 345

Friends

Friends

Kira John

Paul Eileen

Church

Kira’s teachers

John’s teachers

Eileen’s work

Fire department

VA medical services

Family friend

Strongly attached

Moderately attached

Slightly attached

Tension

Direction of energy flow FIGURE 11-8 Caldwell family ecomap.

(continued)

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emotionally, both children have had to take on family roles that their parents used to manage. For example, the daugh- ter, Kira, now must do more of the family meal preparation and house cleaning. The son, John, has to do all of the yard work, which has made it harder to spend time with his friends. Both teenagers are starting not to do as well in school because of the constant tension in the home and their fears that their parents may divorce. Because Mr. Caldwell’s trauma is so severe, it is highly likely the other members of the family will suffer secondary traumatization.

This family’s response to the trauma of Mr. Caldwell from war cannot be understood or treated by focusing on just his care (microsystem). His family members (mesosys- tem) can provide key contextual information about past traumatic events and experiences that can explain current responses. In fact, they are a central reason why Mr. Caldwell wants to get better and resume more of his leadership roles within the family. As he has been spiraling downward, the rest of the family has followed and all now report dete- riorating mental health.

The boundaries or borders for this family may both be protective and act as a barrier to seeking help. It may be that Mrs. Caldwell feels it is disloyal to talk about her hus- band’s problems with an outsider. Mr. Caldwell has many fears about admitting his difficulties and feels ashamed about how his problems have affected his wife. Mrs. Cald- well is afraid to ask for help because she does not want her husband to feel any more embarrassment than he does already. They are both suffering in silence, reluctant to talk to each other, or to anyone else. The nurse will have to create a trusting relationship to overcome this natural reluc- tance to share family secrets. One of the things that may help is to explain how providing this information may en- hance the medical team’s ability to provide quality care.

In this case, the spousal relationship has suffered be- cause of Mr. Caldwell’s trauma. Wartime separation and reunion, and then later problems with PTSD from combat, have created some marital dysfunction that was not there before. In this situation, the marital relationship as a subset within this family is the most problematic area. By helping this family improve this one area of its family functioning through appropriate referral, the nurse could have a great impact on the rest of the family subsystems. Because this is a new experience for Mr. and Mrs. Caldwell, they are not quite sure how to deal with it, plus they are reluctant to seek outside help at this time.

Assessment and Intervention Considerations: The assessment and intervention for the Caldwell family focuses on PTSD and secondary trauma. As we can see

clearly from this case, although Mr. Caldwell’s traumatic exposure occurred some time ago, undiagnosed or inade- quately treated PTSD could complicate his surgical recov- ery. PTSD is associated with more physical health problems and somatic symptom severity (Hoge, Terhakopian, Castro, Messer, & Engel, 2007). Although chronic widespread pain (CWP)—defined as pain in various parts of the body and fatigue that lasts for 3 months or longer—has thus far been documented only in veterans from the first Gulf War, the potential for this phenomenon to emerge in current com- bat veterans is high. CWP is associated with greater health care utilization and a lower quality of life (Forman-Hoffman et al., 2007). Researchers working for the Veterans Admin- istration have documented that a substantial percentage of Iraq and Afghanistan veterans experience ongoing or new pain, of which 28% report is severe (Gironda, Clark, Massengale, & Walker, 2006).

In this instance, postoperatively Mr. Caldwell may be having more problems with pain perception, pain toler- ance, and other kinds of untreated chronic pain. In addi- tion, PTSD symptoms may make it difficult for the nurse to communicate with the patient, may reduce the patient’s active collaboration in evaluation and treatment, and reduce patient adherence to medical regimens.

Assessment: Because trauma is underrecognized, patients with PTSD are not properly identified and are not offered education, counseling, or referrals for mental health evaluation. There are simple methods to screen patients who may have undetected PTSD. As noted, one easy to use tool is the Primary Care PTSD Screen (Prins et al., 2004), consisting of four questions preceded by the following introduction:

“In your life, have you ever had any experience that was so frightening, horrible, or upsetting that, in the past month, you...

1. Have had nightmares about it or thought about it when you did not want to?

2. Tried hard not to think about it or went out of your way to avoid situations that reminded you of it?

3. Were constantly on guard, watchful, or easily startled? 4. Felt numb or detached from others, activities or your

surroundings?”

The screen is positive if the patient answers yes to any three items.

Next, assess the family for possible symptoms of sec- ondary traumatization. How are Mr. Caldwell’s wife and children responding to his symptoms? What symptoms are they experiencing as a result of his difficulties? Identify how

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roles may have shifted for this family given Mr. Caldwell’s current circumstances. Is the family still functioning as a strong cohesive unit? How have things changed? How open is this family to working with the nurse? What might help facilitate this?

Intervention: Provide education about PTSD and secondary trauma. Because the family’s participation is essential in identifying symptoms of PTSD and planning treatment, the nurse must create an environment that is supportive and inclu- sive of family members in order to work in partnership with the family. There are several sites on the Internet that can help the nurse develop educational fact sheets that can be shared with patients and families. The Veterans Affairs National Center for PTSD and the Defense Department’s Walter Reed Army Medical Center collaborated to develop the Iraq War Clinician Guide (available at www.ncptsd.org/ topics/war.html). The next step that the nurse should take in intervening with the Caldwell family is referring all family members for further care. Set up a plan for referring to a PTSD specialist those patients who show signs of potential PTSD and who are amenable to receiving additional evalu- ation or counseling. In this instance, the nurse could provide the family with a list of possible options. Many local areas have lists of returning veteran’s counseling services that include counseling for couples and families. Involve the family in the plan of follow-up care.

SUMMARY

■ Trauma affects the entire family system. ■ Post-traumatic stress disorder (PTSD),

which is a response to trauma, is more likely to develop when resiliency traits are lacking either before or after the trauma.

■ PTSD can be acute or chronic and can occur months, even years, after a disaster or trau- matic event such as war. PTSD affects both children and adults, with adults more likely to have flashbacks of the incident, and chil- dren more likely to develop hypersensitivity and avoidance of similar situations (e.g., avoiding cars after a motor vehicle accident).

■ The Ecological Systems Theory can guide nursing assessment and interventions to help families cope effectively with trauma.

■ When one or more family members are trau- matized by an experience, all family members and family relationships are affected.

■ The more severe the trauma an individual family member suffers, the more likely the other members of the family are at risk for secondary trauma.

■ The family response to trauma of one or more of its members cannot be understood or treated by focusing on individual family members alone. Family members can provide key contextual information about past trau- matic events and experiences that help explain current responses.

■ Community systems can prevent, treat, and measure negative outcomes to traumatic events. If community agencies are not well trained and prepared, the risks for undetected and untreated PTSD increase.

■ Larger political and social systems can influ- ence and be influenced by individual, family, and community trauma. If nations experience severe trauma, they, as a whole, show signs of PTSD.

■ Nursing focuses on the individual, family, community, and societal reactions to trauma in order to optimize positive outcomes and prevent or treat negative implications.

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350 Families Across the Health Continuum

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U N I T

3 Nursing Care of Families in Clinical Areas

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353

Family Nursing With Childbearing Families

c h a p t e r 12

Linda Veltri, PhD, RN

Karline Wilson-Mitchell, RM, CNM, RN, MSN

Kathleen Bell, RN, MSN, CNM, AHN-BC

C r i t i c a l C o n c e p t s

■ Childbearing family nursing is not synonymous with obstetrical nursing, which only considers the woman as the client and as the family as context for care. In contrast, childbearing family nursing considers the family as client, the family as context for the care of its members, or both. Childbearing family nursing primarily focuses on health and wellness rather than on procedures and medical treatment.

■ Nurses must understand and utilize multiple theories to plan and guide nursing care for childbearing families.

■ Nurses must understand the impact that social policy, available resources, and geographical location have on child- bearing families.

■ The holistic care of these families is best provided with an approach that acknowledges the social determinants of health and the integration of all of the members of the health care team and community resources.

■ Nurses need to be aware of stressors childbearing families encounter before, during, and after reproductive events so they can anticipate, identify, and respond to needs appropriately.

■ The family constellation and the definition of family depend on the culture, worldview, sexual orientation, and per- spective of the family. Consequently, childbearing family nursing necessitates demonstrating respect and cultural competence.

■ Nursing care for adoptive families should be provided in a manner similar to that which is provided to biological families. Nurses should recognize and meet these families’ special needs, regardless of the family constellation.

■ Nurses caring for childbearing families experiencing infertility must consider, understand, and address the family’s emotional and physical needs.

■ Understanding the many ways families experience grief and loss allows nurses to advocate for practices that best facilitate childbearing as a transitional event in the life of the family.

■ A process of bereavement should be anticipated with perinatal loss, adverse perinatal outcome, diagnosis of congeni- tal or genetic disorders, palliative care, or the birth of a special needs child.

(continued)

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Before the onset of professional nursing in North America during the late 19th century, caregivers for childbearing families were women. Female fam- ily members, in-laws, neighbors, friends, and mid- wives came to the home to encourage, support, and nurture a woman during and after childbirth (Burst, 2004; Mander, 2004; Varney, Kriebs, & Gregor, 2004). During this time, many of these women midwives were settlers who followed the European colonists and were African slaves, or First Nations/Native Americans. Similarly, in Canada, Canadian pioneer and Aboriginal midwives also at- tended births up through the 1940s. It was these women caregivers who maintained family functions of the household, tended to new babies and moth- ers’ other children, and provided postpartum phys- ical care. During these same years, the father’s role in childbirth was limited to announcing labor had begun and seeking assistance from other women (Mander, 2004). Although male obstetricians emerged as primary clinical providers of birth man- agement and influenced both maternity education and health care policy in the 1860s, male family members, friends, and children were excluded from the childbirth experience until the 1970s. This prac- tice was justified by the belief that nonmedical par- ticipants increased the risk of introducing infection into the perinatal setting.

Beginning in the late 1960s, families became in- creasingly knowledgeable about childbearing and desirous of a more satisfying birth experience as a family event. The families became savvy health care consumers who found hospital routines and policies too restrictive if they required strict adherence to newborn feeding and sleeping schedules, kept

fathers and siblings out of the delivery room, or sep- arated parents from their newborns. In response, in- formed families lobbied for changes in childbearing practices; they used evidence to support not separat- ing mothers and babies immediately after delivery, as well as other hallmark findings demonstrating im- proved parent-child attachment with immediate and frequent contact between mothers, fathers, and sib- lings and their newborns (de Chateau, 1976, 1977; Klaus et al., 1972; Martell, 2006). Largely as a result of the women’s rights and health reproductive movement (Morgan, 2002), families presented com- pelling arguments for hospitals to support exclusive breastfeeding, kangaroo-care or “skin-to-skin” baby carrying, and delayed cord clamping (Britton, McCormick, Renfrew, Wade, & King, 2007; Gray, Miller, Philipp, & Blass, 2002; Gray, Watt, & Blass, 2000; Hutton & Hassan, 2007; Mercer et al., 2006).

In time, nurses, hospitals, and other health care providers for women began to recognize the effect reproductive events have on all family members, as well as the reciprocal influence of the family on the parents and infants. This recognition has resulted in inclusion of family concepts into nursing care of childbearing families. With the trend for increased family education about reproductive events, in- creased responsibility for family members to plan for care during pregnancy and delivery, and shorter hospital stays after birth, postpartum care is return- ing to family care within the context of the home with nursing guidance, rather than being medically based in a hospital. This shift in focus from caring for the individual woman as client toward consid- eration and inclusion of the family in care from preconception to the postpartum period is known

354 Nursing Care of Families in Clinical Areas

C r i t i c a l C o n c e p t s ( c o n t . )

■ When a mother or a newborn has serious threats to health, family nurses act to maintain and promote family rela- tionships. Threats to the health and integrity of the family become a reality when separation from family members occurs (e.g., apprehension of children due to child protection risks or incarceration of the mother).

■ Understanding the effect a new baby has on all family members allows nurses to work to help parents develop realistic expectations about themselves, each other, and their children, as well as to identify appropriate support and resources.

■ Postpartum depression is treatable and recoverable. Therefore, family nurses must work diligently to identify and refer women for appropriate treatment as early as possible to reduce the effects of maternal depression on the woman and her family.

■ Family nurses can be leaders in practice, policy development, and research related to childbearing families.

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as childbearing family nursing. The historical per- spective is outlined in Box 12-1.

Notably, the practice of childbearing family nursing is not synonymous with obstetrical nurs- ing. Obstetrical nursing considers the woman as the client and views the family as the context for care. Childbearing family nursing, by contrast, considers the family as the client and the family as context for the care of its members. It is a health and wellness, rather than an illness, model of care. Similarly, childbearing family nurses take

a holistic approach to care; they consider the woman and her family’s physical, mental, emo- tional, spiritual, social, and cultural indicators of health. Although the woman, as an individual, is most affected by the event of childbirth, the fam- ily unit is intimately involved in that event. For example, the addition of a new human being into the world involves caring for the minds, bodies, and spirits of all those who will be entrusted to nurture the newborn. Becoming a part of this transitional time through engagement in the

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BOX 12-1 Historical Perspective of Childbearing Family Nursing

Historical Perspective Late 1800s: Industrialization ■ Families moved to more urban areas; household size

and functions diminished. ■ Traditional networks of women were not always avail-

able, and mothers needed to replace care previously carried out in the home.

■ Childbearing still occurred at home for many middle- class families (Leavitt, 1986; Wertz & Wertz, 1989).

■ European colonists, African slaves, and First Nations/ Native Americans served as midwives.

First Third of the 20th Century ■ The hospital became the place for labor, birth, and early

postpartum recovery for middle-class families. ■ Many immigrant and working-class urban families con-

tinued to have newborns at home with their traditional care providers.

■ An impetus to the development of public health nursing was concern for the health of urban mothers and babies.

■ Realizing that the health needs of all the family mem- bers were intertwined, early public health nurses consid- ered families, not individuals, as their clients.