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Brief Contents 1 Nurse’s Role in Care of the Child: Hospital,

Community, and Home 1

2 Family-Centered Care and Cultural Considerations 17

3 Genetic and Genomic Influences 45

4 Growth and Development 66

5 Pediatric Assessment 98

6 Introduction to Health Promotion and Maintenance 144

7 Health Promotion and Maintenance for the Newborn and Infant 154

8 Health Promotion and Maintenance for the Toddler and Preschooler 166

9 Health Promotion and Maintenance for the School-Age Child and Adolescent 182

10 Nursing Considerations for the Child in the Community 207

11 Nursing Considerations for the Hospitalized Child 222

12 The Child With a Chronic Condition 246

13 The Child With a Life-Threatening Condition and End-of-Life Care 260

14 Infant, Child, and Adolescent Nutrition 281

15 Pain Assessment and Management in Children 310

16 Immunizations and Communicable Diseases 333

17 Social and Environmental Influences on the Child 367

18 Alterations in Fluid, Electrolyte, and Acid–Base Balance 404

19 Alterations in Eye, Ear, Nose, and Throat Function 440

20 Alterations in Respiratory Function 474

21 Alterations in Cardiovascular Function 518

22 Alterations in Immune Function 563

23 Alterations in Hematologic Function 589

24 The Child With Cancer 610

25 Alterations in Gastrointestinal Function 655

26 Alterations in Genitourinary Function 701

27 Alterations in Neurologic Function 739

28 Alterations in Mental Health and Cognitive Function 790

29 Alterations in Musculoskeletal Function 821

30 Alterations in Endocrine Function 861

31 Alterations in Skin Integrity 900

Appendix A Physical Growth Charts 942

Appendix B Blood Pressure Tables 952

Appendix C Dietary Reference Intakes 954

Appendix D Selected Pediatric Laboratory Values 956

Appendix E Diagnostic Tests and Procedures 959

Appendix F Body Surface Area Nomogram 964

Appendix G Conversions and Equivalents 965

Glossary 966 Index 978

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Principles of Pediatric Nursing

Caring for Children Seventh Edition

Jane W. Ball, RN, CPNP, DrPH Consultant, Trauma System Development, Gaithersburg, Maryland

Ruth C. Bindler, RNC, PhD Professor Emeritus, Washington State University College of Nursing, Spokane, Washington

Kay J. Cowen, RN-BC, MSN, CNE Clinical Professor, University of North Carolina at Greensboro School of Nursing, Greensboro, North Carolina

Michele R. Shaw, RN, PhD Associate Professor, Washington State University College of Nursing, Spokane, Washington

330 Hudson Street, NY NY 10013

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ISBN-13: 978-0-13-425701-3 ISBN-10: 0-13-425701-4

Publisher: Julie Levin Alexander Editorial Coordinator: Sarah Henrich Portfolio Manager: Katrin Beacom Content Producer: Erin Rafferty Editorial Assistant: Erin Sullivan Vice President of Sales & Marketing: David Gesell Vice President, Director of Marketing: Margaret Waples Senior Product Marketing Manager: Christopher Barry Field Marketing Manager: Brittany Hammond Director, Publishing Operations: Paul DeLuca Team Lead, Project Management: Cynthia Zonneveld Team Lead, Program Management: Melissa Bashe Development Editor: Mary Cook

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Notice: Care has been taken to confirm the accuracy of information presented in this book. The authors, edi- tors, and the publisher, however, cannot accept any responsibility for errors or omissions or for consequences from application of the information in this book and make no warranty, express or implied, with respect to its contents. The authors and publisher have exerted every effort to ensure that drug selections and dosages set forth in this text are in accord with current recommendations and practice at time of publication. However, in view of ongo- ing research, changes in government regulations, and the constant flow of information relating to drug therapy and reactions, the reader is urged to check the package inserts, pharmacy information, or current online infor- mation of all drugs for any change in indications or dosage and for added warning and precautions. This is particularly important when the recommended agent is a new and/or infrequently administered drug. Copyright © 2017, 2015, 2012, 2008, 2004 by Pearson Education, Inc. All rights reserved. Manufactured in the United States of America. This publication is protected by Copyright and permission should be obtained from the publisher prior to any prohibited reproduction, storage in a retrieval system, or transmission in any form or by any means, electronic, mechanical, photocopying, recording, or likewise. To obtain permission(s) to use material from this work, please submit a written request to Pearson Education, Inc., Permissions Department, 221 River Street, Hoboken, New Jersey 07030. Many of the designations by manufacturers and seller to distinguish their products are claimed as trademarks. Where those designations appear in this book, and the publisher was aware of a trademark claim, the designa- tions have been printed in initial caps or all caps. A note about nursing diagnoses: Nursing diagnoses in this text are taken from Nursing Diagnoses—Definitions and Classification 2015–2017. Copyright © 2014, 1994–2012 by NANDA International. Used by arrangement with John Wiley & Sons Limited. In order to make safe and effective judgments using NANDA-I nursing diagnoses it is essential that nurses refer to the definitions and defining characteristics of the diagnoses listed in this work.

Library of Congress Cataloging-in-Publication Data Names: Ball, Jane (Jane W.), author. | Bindler, Ruth McGillis, author. | Cowen, Kay J., author. | Shaw, Michele R., author. Title: Principles of pediatric nursing: caring for children / Jane W. Ball, Ruth C. Bindler, Kay J. Cowen, Michele R. Shaw. Description: Seventh edition. | Hoboken, NJ : Pearson Education, [2017] | Includes bibliographical references and index. Identifiers: LCCN 2016035091| ISBN 9780134257013 | ISBN 0134257014 Subjects: | MESH: Pediatric Nursing | Nursing Assessment--methods | Child | Infant Classification: LCC RJ245 | NLM WY 159 | DDC 618.92/00231—dc23 LC record available at https://lccn.loc.gov/2016035091

2014017177 10 9 8 7 6 5 4 3 2 1

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iii

We dedicate this book to:

š� Our families who are ever supportive and understanding about our passion for children and writing,

š� Our mentors, colleagues, and students who inspire us to apply our knowledge and challenge our thinking,

š� The children, adolescents, and families with whom we work and who foster our philosophy of pediatric nursing.

Dedication

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About the Authors

JANE W. BALL graduated from the Johns Hopkins Hospital School of Nursing and subsequently received a BS from the Johns Hopkins University. She began her nursing career work- ing in the pediatric surgical inpatient, emergency department, and outpa- tient clinic of the Johns Hopkins Medi- cal Center, first as a staff nurse and then as a pediatric nurse practitioner.

After recognizing a need to focus on the health of children, she returned to school and obtained both a master ’s degree of pub- lic health and a doctorate of public health degree from the Johns Hopkins University Bloomberg School of Public Health with a focus on maternal and child health. After graduation, Dr. Ball became the chief of child health services for the Commonwealth of Pennsylvania Department of Health. In this capacity she oversaw the state-funded well-child clinics and explored ways to improve education for the state’s community health nurses. After relocating to Texas, she joined the faculty at the Univer- sity of Texas at Arlington School of Nursing to teach community pediatrics to registered nurses returning to school for a BSN. During this time Dr. Ball became involved in writing her first textbook, Mosby’s Guide to Physical Examination, which is cur- rently in its eighth edition. After relocating to the Washington, DC, area, she worked at Children’s National Medical Center on a number of federally funded projects. The first project in 1986, teaching instructors of emergency medical technicians from all states about the special care children need during an emergency, revealed the shortcomings of the emergency medical services system for children. This exposure was a career-changing event. A textbook titled Pediatric Emergencies: A Manual for Prehospital Providers was subsequently developed. A second project led to the development of a pediatric emergency education program for nurses in emergency departments to promote improved care for children. Both of these programs served as a foundation for other pediatric emergency education developed and sponsored by national organizations. For 15 years Dr. Ball managed the federally funded Emergency Medical Services for Children’s National Resource Center. As executive director, she provided and directed the provision of consultation and resource devel- opment for state health agencies, health professionals, families, and advocates about successful methods to improve the health- care system so that children get optimal emergency care in all healthcare settings. After leaving that position, she continues to be engaged in many projects with a focus on the emergency care system. She is a consultant to the American College of Sur- geons Committee on Trauma, supporting state trauma system development. She recently completed a federally funded project

to study whether the implementation of a statewide pediatric emergency department recognition program improved pediat- ric emergency care. In 2010, Dr. Ball received the Distinguished Alumna Award from the Johns Hopkins University.

RUTH C. MCGILLIS BINDLER re- ceived her BSN from Cornell Uni- versity—New York Hospital School of Nursing. She worked in oncology nursing at Memorial-Sloan Ketter- ing Cancer Center in New York, and then as a public health nurse in Dane County, Wisconsin. Thus began her commitment to work with children as she visited children and their families

at home and served as a school nurse. Due to this interest in child healthcare needs, she earned her MS in child development from the University of Wisconsin. A move to Washington State was accompanied by a new job as a faculty member at the Inter- collegiate Center for Nursing Education in Spokane. Dr. Bindler was fortunate to be involved for over 38 years in the growth of this nursing education consortium, which is a combination of public and private universities and colleges and is now the Washington State University (WSU) College of Nursing. She obtained a PhD in human nutrition at WSU, where she taught theory and clinical courses in child health nursing, cultural di- versity and health, graduate research, pharmacology, and as- sessment, and served as lead faculty for child health nursing. Dr. Bindler was the first director of the PhD in Nursing program at WSU and most recently served as Associate Dean for Graduate Programs, which include Master of Nursing, Post-Masters cer- tificates, PhD, and Doctor of Nursing Practice (DNP) programs. She recently retired and serves the college and profession as a professor emeritus, continuing work with graduate students and research. Her first professional book, Pediatric Medications, was published in 1981, and she has continued to publish articles and books in the areas of pediatric medications and pediatric health. Research foci have been childhood obesity, type 2 dia- betes, metabolic syndrome, and cardiometabolic risk factors in children. Ethnic diversity and interprofessional collaboration have been additional themes in her work. Dr. Bindler believes that her role as a faculty member and administrator enabled her to learn continually, foster the development of students in nursing, lead and mentor junior faculty into the teaching role, and participate fully in the profession of nursing. In addition to teaching, research, publication, and leadership, she enhances her life by professional and community service and by activities with her family.

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vi About the Authors

KAY J. COWEN received her BSN from East Carolina University in Greenville, North Carolina, and began her career as a staff nurse on the pediatric unit of North Carolina Baptist Hospital in Winston-Salem. She developed a spe- cial interest in the psychosocial needs of hospitalized children and preparing them for hospitalization. This led to the focus of her master ’s thesis at the

University of North Carolina at Greensboro (UNCG), where she received a master of science in nursing education degree with a focus in maternal child nursing.

Mrs. Cowen began her teaching career in 1984 at UNCG, where she continues today as clinical professor in the Parent Child Department. Her primary responsibilities include coor- dinating the pediatric nursing course, teaching classroom con- tent, and supervising a clinical group of students. Mrs. Cowen shared her passion for the psychosocial care of children and the needs of their families through her first experience as an au- thor in the chapter “Hospital Care for Children” in Jackson and Saunders’ Child Health Nursing: A Comprehensive Approach to the Care of Children and Their Families published in 1993.

In the classroom, Mrs. Cowen realized that students learn through a variety of teaching strategies and became especially interested in the strategy of gaming. She led a research study to evaluate the effectiveness of gaming in the classroom and sub- sequently continues to incorporate gaming in her teaching. In the clinical setting, Mrs. Cowen teaches her students the skills needed to care for patients and the importance of family-cen- tered care, focusing not only on the physical needs of the child but also on the psychosocial needs of the child and family. Dur- ing her teaching career, Mrs. Cowen has continued to work part time as a staff nurse, first on the pediatric unit of Moses Cone Hospital in Greensboro and then at Brenner Children’s Hospital in Winston-Salem. In 2006, she became the part-time pediatric nurse educator in Brenner ’s Family Resource Center. Through Mrs. Cowen’s expertise, she is able to extend her love of teach- ing to children and families, and through her role as an author, she is able to extend her dedication to pediatric nursing and nursing education.

MICHELE R. SHAW received her BSN from Pacific Lutheran University in Tacoma, Washington. She began her career as a nurse at a long-term care facility and then as a home healthcare nurse in Spokane, Washington. While making home visits, she became in- terested in the nursing care needs of children and families. She realized the importance of educating the fam-

ily about their child’s condition and to include family members while planning and carrying out the nursing care plan. This in- terest in family nursing led her into the area of maternal-child nursing, where she served as a postpartum nurse for nearly 18 years. Her experience with providing nursing care to families in various settings has highlighted her belief in the need of a fam- ily-centered approach in order to provide optimal nursing care. Dr. Shaw began her teaching career as a teaching assistant in 2001 at the Washington State University (WSU) College of Nurs- ing, where she continues today as an associate professor. It was during those early years as a teaching assistant that she began to realize her passion for educating nursing students. This in- terest led to her completing a master ’s degree in nursing with an emphasis on education at WSU. Knowing that she wanted to continue working in nursing academia, Dr. Shaw went on to receive her PhD in nursing from the University of Arizona in Tucson. She has taught theory, seminar, and clinical courses in maternal-child nursing, family health, evidence-based practice, ethical decision making, physical assessment, and professional practice. Dr. Shaw recently assisted in the development of the Bachelor of Science-to-PhD in Nursing program at WSU. This fast-track program will enable students with an earned bach- elor’s degree to complete a PhD in nursing in four years.

Dr. Shaw enjoys working with undergraduate and gradu- ate students and encourages active participation in research. Her research interests include children with asthma and their families, childbearing women and their families, and substance use among youth and childbearing women. She is particularly interested in children’s and families’ unique perspectives, and thus much of her research uses qualitative approaches. She con- tinues to publish articles in the areas of pediatric asthma and substance use among childbearing women. Dr. Shaw believes her active role in nursing academia and research allows her to stay current in various pedagogical approaches to enhance nursing students’ learning experiences, as well as continuous learning about evidence-based interventions to provide nursing care to children and families.

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vii

Thank You!

We are forever grateful to nurse geneticist Linda D. Ward, PhD, APRN, the author of this book’s genetics chapter, Chapter 3, “Genetic and Genomic Influences.” We appreciate her expertise in genetic and genomic science, her superb writing skills, and her willingness to contribute such an essential chapter to our text. We are also thankful to Brenda Senger, RN, PhD, for contributing the content on mitochondrial diseases in Chapter 30.

We are grateful to all the nurses, both clinicians and educators, who reviewed the manuscript of this text. Their insights, suggestions, and eye for detail helped us prepare a more relevant, useful, and current book, reflective of the present time and of the essential components of learning in the field of child health nursing.

Mary Armstrong, MSN, RN, CCRN, CPN Carson Newman University Jefferson City, Tennessee

Elizabeth Bettini, APRN, MSN, PCNS-BC, CHPPN Division of Anesthesiology & Pain Medicine Children’s National Medical Center Washington, D.C.

Melissa Black, PhDc, MSN, FNP, RN NCLEX Review Nurse Kaplan Greenville, South Carolina

Ann M. Bowling, PhD, RN, CPNP-PC, CNE Assistant Professor Wright State University Dayton, Ohio

Michele I. Bracken, PhD, WHNP-BC Associate Professor Clinical Coordinator Ma- ternal/Newborn/Women’s Health Salisbury University Salisbury, Maryland

Robin Caldwell, RNC-OB Instructor Catawba Valley Community College Hickory, North Carolina

Karan Dublin, MEd, RN Professor Tyler Junior College Tyler, Texas

Barbara S. Edwards, RN, CPN Staff Nurse Brenner Children’s Hospital Winston-Salem, North Carolina

Linda B. Esposito, MSN, RN, CCRN Nurse Practice Specialist Brenner Children’s Hospital Wake Forest Baptist Medical Center Winston-Salem, North Carolina

Julie Fitzgerald, PhD, RN, CNE Assistant Professor Ramapo College of New Jersey Mahwah, New Jersey

Niki Fogg, MS, RN, CPN Assistant Clinical Professor Texas Woman’s University Dallas, Texas

Vivienne Friday, EdD, RN Nurse Educator Bridgeport Hospital School of Nursing Bridgeport, Connecticut

Deborah Henry, MSN, RN Nursing Faculty Blue Ridge Community College Flat Rock, North Carolina

Indra Hershorin, PhD, RN, CNE Assistant Professor Barry University Miami Shores, Florida

Karen L. Hessler, PhD, FNP-C Assistant Professor University of Northern Colorado Greeley, Colorado

Catherine Hrycyk, MScN, RN Faculty, Pediatric Nursing and Pharmacology De Anza College Cupertino, California

Gina Idol, RN, BSN, CPN Wake Forest Baptist Health Brenner Children’s Hospital Winston-Salem, North Carolina

Laura Kubin, PhD, RN, CPN, CHES Assistant Professor Texas Woman’s University Dallas, Texas

Meredith Lahl, MSN, PCNS- BC, PPCNP-BC, CPON Senior Director of Advanced Practice Nursing Cleveland Clinic Cleveland, Ohio

Robyn Leo, MS, RN Associate Professor and Chairperson for Nursing Worcester State University Worcester, Massachusetts

Angela P. Lukomski, RN, DNP, CPNP Associate Professor Eastern Michigan University Ypsilanti, Michigan

Patricia Novak, RN, BSN, MSN Faculty Gateway Community College Phoenix, Arizona

Gloanna J. Peek, PhD, RN, CPNP Clinical Associate Professor PNP Specialty Option Coordinator The University of Arizona Tucson, Arizona

Susan Perkins, MSN, RN Senior Instructor Washington State University Spokane, Washington

Linda Sue Pippin, MSN, RN-BC Adjunct Faculty Newberry College Newberry, South Carolina

Theresa Puckett, RN, CNE Instructor Stark State College North Canton, Ohio

Colleen Quinn, RN, MSN, EdD Professor Broward College Davie, Florida

JoAnne Silbert-Flagg, DNP, PNP, IBCLC Assistant Professor Johns Hopkins University Baltimore, Maryland

Jennifer S. Simmons, MSN, RN, CPNP-AC/PC, CPON Pediatric Oncology Nurse Practitioner Brenner Children’s Hospital Wake Forest Baptist Medical Center Winston-Salem, North Carolina

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viii Thank You!

Anita Smith, CPNP Nurse Practitioner Department of Pediatric Hematology Wake Forest Health Sciences Winston-Salem, North Carolina

Charla Smith, MSN, RN, CPN, CNE Associate Professor Jackson State Community College Jackson, Tennessee

Nancy M. Smith, DNP, CRNP, FNP-BC Assistant Professor Salisbury University Salisbury, Maryland

Maureen P. Tippen, RN, C, MS Clinical Assistant Professor University of Michigan Flint, Michigan

Teresa Tyson, RN, PhD Assistant Professor Winston-Salem State University Winston-Salem, North Carolina

Diane K. Van Os, MS, RN Professor Westminster College Salt Lake City, Utah

Amber Welborn, RN, MSN Lecturer University of North Carolina Greensboro, North Carolina

Cecilia Wilson, PhD, RN, CPN Associate Clinical Professor Texas Woman’s University Dallas, Texas

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Preface

Health care and healthcare delivery systems are chang-ing dramatically. The Affordable Care Act, a focus on interprofessional collaboration, an emphasis on patient safety, and evidence-based practice will contribute to ongoing challenges and evolution in health care in the com- ing years. Pediatric nurses must respond to and integrate these changes into their practice. In addition, pediatric nursing presents its own unique challenges for practitioners of health care. Student nurses must learn what helps them to provide safe, effective, and excellent care today, while integrating new knowledge and skills needed as nursing practice continues to develop and respond to healthcare needs. Students must learn how to think and apply information as new knowledge be- comes available. “As the student uses knowledge in situations of practice, new understanding is gained as well as knowing how, when, and why it is relevant in particular situations. . . . We call this teaching for a sense of salience.”*

Faculty are responsible for selecting patient care assign- ments that assist the student in applying knowledge in the clinical setting, as well as utilizing various pedagogies to assist the student in focusing on the patient experience. We have in- tegrated concepts from the Carnegie Report that foster clinical expertise by offering a variety of critical thinking and clinical reasoning questions, patient care scenarios, and re- search and evidence-based practice features. Information tech- nology plays a major role in both health care and teaching, and therefore features in this text encourage the student to use and analyze content available through information technology.

Preparation for Nursing Excellence The goal of this seventh edition of Principles of Pediatric Nurs- ing is to provide core pediatric nursing knowledge that pre- pares students for excellence in nursing and to offer the tools of scholarship and critical thinking needed to apply this learning in the future. Students must learn to question, evaluate the re- search evidence available, apply pertinent information in clini- cal settings, and constantly adapt to growing knowledge and an evolving healthcare system.

This text reflects a multitude of approaches to learning that can be helpful to all students. We acknowledge that many stu- dents learn pediatric nursing in a very short time period. There- fore, the approaches in this text are designed to assist students to assess the child’s needs, take into account population-based practice, and make care decisions based on the standards of pe- diatric nursing practice.

Realities of Pediatric Nursing Pediatric nursing occurs in many acute care and community healthcare settings, such as hospitals, homes, schools, and health centers. Procedures may be performed in short-stay

units, and long-term care is often provided at home for children with complex health conditions. Families are often the provid- ers of care as well as the case managers for these children. Tech- nologic advances are resulting in earlier diagnoses and new therapies; these technologic approaches are integrated when- ever pertinent throughout the text.

Pediatric nursing care is provided within the context of a rapidly changing society. An examination of the major morbidi- ties and mortalities of childhood guided the revision of material and topics throughout the text. Specific chapters focus on the family, health promotion across the life span, pediatric nutri- tion, and care for children with chronic conditions. Chapter 2 addresses cultural influences on health care and provides guid- ance for students caring for children in our growing intercul- tural society. Chapter 3, on genetics and genomics, is intended to help students recognize the impact of such knowledge on pediatric nursing and apply these concepts when working with families. Current social and environmental challenges for chil- dren have guided the further development of Chapter 17, which covers societal and environmental influences on child health.

Many graduating nurses practice in acute care facilities; this text continues to emphasize the information necessary to prepare students for working in hospitals. In addition, the in- formation provided here will enable graduates to assume posi- tions in ambulatory care facilities, home health nursing, schools, and a variety of other settings. Effective communication meth- ods, principles of working with families, and knowledge of pathophysiologic, psychologic, developmental, and environ- mental factors found in these chapters can all be applied in a wide variety of settings. The importance of interprofessional care is recognized; therefore, collaboration and communication with various health professionals is emphasized.

Another major evolution involves access to information and reliance on the Internet. Nurses must learn to ob- tain information and then analyze and judge the quality of information they find. Increasingly, nurses need experience with information technology and management. Nurses must also advise children and family members to use the Internet wisely to help them in making healthcare choices. This text will assist the student in making practice decisions based on schol- arship and evidence-based research.

Organization and Integrated Themes We have organized Principles of Pediatric Nursing: Caring for Children, Seventh Edition, to present important information on growth and development, family-centered care, culture, genetics, physical assessment, health promotion, nutrition, health issues in today’s world, and children’s responses to ill- ness and injury. This information is needed to care for children in the many healthcare settings where pediatric nursing care is provided. Following the foundational chapters, this book is

*Benner, P., Sutphen, M., Leonard, V., & Day, L. (2010). Educating nurses: A call for radical transformation (p. 94). San Francisco, CA: Jossey-Bass.

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x Preface

organized by body systems to facilitate the student’s ability to locate information, focus studying, and prepare for clinical ex- periences with children and families. The organizational frame- work also eliminates redundancy, so that the student uses time efficiently. Learning Outcomes begin the chapter, and Chapter Highlights end the chapter.

The Bindler-Ball Child Healthcare Model is used to illustrate the important core value that all children need health promotion and health maintenance interventions, no matter where they seek health care or what health conditions they may be experiencing.

The nursing process is used as the framework for nursing care. Nursing Management is the major heading, with sub- headings of Nursing Assessment and Diagnosis, Planning and Implementation, and Evaluation. When it is appropriate to fo- cus on care in a specific setting, Hospital-Based Care, Discharge Planning, and Community Care are separated into sections. We feature nursing care plans throughout the text to help students approach care from the nursing process perspective. Some have an acute care hospitalization focus, whereas others have a com- munity-based focus. Nursing Care Plans include nursing diag- noses, goals, interventions, and rationales.

Several major concepts are integrated throughout the text to encourage the student to think creatively and critically about nursing care. These major themes are interwoven throughout the text through the many features and supplements, including:

š� Nursing care is the critical and central core of this text. Nursing assessment and management are emphasized in all sections of the book, with examples of nurses provid- ing care in a number of different settings. Nurses apply a variety of guidelines related to the profession and to health conditions. The new feature, Professionalism in Practice, relates guidelines important to nursing care.

š� Collaborative care descriptions of the diagnostic and therapeu- tic care for various health conditions reflect the interprofes- sional team role of nurses with other healthcare professionals (e.g., physicians, physical therapists, mental health counsel- ors, pharmacists, and others) as described in The Essentials of Baccalaureate Education for Professional Nursing Practice (American Association of Colleges of Nursing, 2008).

š� Clinical reasoning and problem-solving principles are integrated in the organization, pedagogy, and writing style. Examples include the evidence-based practice features, clinical rea- soning boxes, the end-of-chapter Clinical Reasoning in Action feature, and art captions. Students practice clinical reasoning and critical thinking in their everyday lives, but they need help to apply these concepts to the practice of nursing. This text and the accompanying learning materials help students understand how their normal curiosity and problem-solving ability can be applied to pediatric nursing.

š� Communication is one of the most important skills that stu- dents need to learn. Effective communication with chil- dren is challenging because they communicate differently, according to their developmental levels. Family members have communication needs in addition to those of their children. Effective communication with a variety of health- care providers is essential for effective care. This book inte- grates communication skills by applied examples that help the student communicate effectively with children, their families, and other health professionals.

š� Patient safety is emphasized in nursing management sec- tions and in the Safety Alert! boxes.

š� Family and patient education about health care is an integral part of the pediatric nurse’s responsibilities. Because hos- pitalizations are often brief, leaving families increasingly responsible for caring for recuperating children at home, information about healthcare needs and procedures has be- come even more important. The Families Want to Know feature describes teaching strategies and content for vari- ous patient conditions.

š� Developing cultural competence is critical for all nurses in the increasingly diverse community of today’s world. Students have met people from different ethnic and cultural groups, but they need help to understand, respect, and integrate differing beliefs, practices, and healthcare needs when pro- viding care.

š� Growth and development considerations and physical assessment are central to the effective practice of pediatric nursing. A separate chapter is devoted to each area (Chapters 4 and 5, respectively). In addition, both topics are integrated where appropriate in narrative, growth and development boxes, figures, and captions.

š� Health promotion is an important focus of nursing care for children with acute and chronic health conditions. Four chapters focus on health promotion. One provides an over- view of concepts related to health promotion; the other three address health promotion principles for children of different ages. In addition, a Health Promotion feature helps illustrate opportunities for maintaining and improv- ing the health of children with certain health conditions.

š� Community care is an increasing part of nursing responsi- bilities. To assist students in transferring knowledge to caring for children in community settings, information is provided in the nursing management sections of chapters. In addition, an entire chapter is devoted to nursing care in the community and directly addresses the nurse’s roles in several community settings.

These themes and others are interwoven in the narrative of most chapters and are reflected in the art as well as in the supplements that students can use to augment their learning.

Resources for Student Success š� Online Resources are available at www.pearsonhighered.

com/nursingresources and aim to further enhance the student’s learning experience, build on knowledge gained from this textbook, prepare students for the NCLEX-RN® examination, and foster clinical reasoning.

š� The Clinical Skills Manual for Maternity and Pediatric Nursing, ISBN 0134257006, is a useful resource to assist stu- dents in successful planning and performance of essential nursing skills. This manual helps translate theoretic con- cepts into performance while caring for health clients in a variety of settings.

š� NEW! Pearson’s Maternity and Pediatric Nursing Reference App, now available for both iPhone and Android devices, provides a collection of handy tools and additional content for students and profes- sionals looking for a quick reference in ma- ternity or pediatrics nursing. The pediatric content provided in the Guidance for Chil- dren and Families section includes insight

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Preface xi

into the issues related to health maintenance, development, and family that may present from birth to adolescence.

š� MyNursingLab for Pediatric Nursing is designed to en- gage students with pediatric content while offering data- driven guidance that helps them better absorb course material and understand difficult concepts. The Pearson eText version of Principles of Pediatric Nursing, Seventh Edition, is available with MyNursingLab for Pediatric Nursing.

Resources for Faculty Success Pearson is pleased to offer a complete suite of resources to sup- port teaching and learning, including:

š� TestGen Test Bank š� Lecture Note PowerPoints š� Classroom Response System PowerPoints š� Instructor’s Resource Manual

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xiii

Acknowledgments

It is both exciting and challenging to have the opportunity to write a textbook and to keep it updated with each revision. It is inspiring to observe the evolution of pediatric nursing practice and to encourage nursing students to share the excite- ment and enthusiasm we feel for working with children and their families. Although each edition carries its own unique set of challenges and circumstances, it continues to be a privilege to contribute to the education of the new generation of student nurses.

This seventh edition integrates new features and digital approaches developed in collaboration with Pearson Nursing. Erin Rafferty, content producer at Pearson, has been responsive and receptive, as well as an effective collaborator with us in this new edition. We are grateful for the support of our port- folio manager at Pearson, Katrin Beacom. The vice president and publisher, Julie Alexander, enthusiastically supported this venture and has supported us in decisions regarding changes, updates, and features for the text.

For this edition, we have been blessed to have Mary Cook as a development editor. Mary challenged us creatively, en- sured consistency, and kept us on track. She has been support- ive, innovative, and composed during the long months of hard work.

We are grateful to the families and many healthcare facilities that have permitted us to capture the images used in photographs throughout the book. George Dodson provided us

with much of the photography to help illustrate current nursing concepts.

We also gratefully acknowledge the contributions of Linda Ward, a nurse leader who authored Chapter 3, “Genetic and Genomic Influences,” and Brenda Senger, who contributed the mitochondrial disease content in Chapter 30.

Our thanks also go to Mary Siener, art director, for guiding all aspects of the design for this edition. At SPi Global, it has been a pleasure to work with Patty Donovan, who coordinated production.

A special thank you goes to Katie m. Berggren, who gave permission to use her painting A Day In May for the cover of this edition. This work and others can be viewed at www.Km- Berggren.com.

Finally, our families once again have supported us tire- lessly through the revision process. They sacrificed by allowing us to work on the book when we could have been with them. Yet, they show others the book with pride. We could not have accomplished this without their love and patience.

Jane W. Ball

Ruth C. Bindler

Kay J. Cowen

Michele R. Shaw

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xiv

Features to Help You Use This Textbook Successfully Instructors and students alike value the in-text learning aids that we include in our textbooks. The fol- lowing guide will help you use the features and resources from Principles of Pediatric Nursing, Seventh Edition, to be successful in the classroom, in the clinical setting, on the NCLEX-RN® examination, and in nursing practice.

Each chapter begins with Learning Outcomes and a chap- ter-opening Quote. These personal stories illustrate the diversity of cultures, parental concerns, and family situa- tions that nurses will encounter throughout the course of their careers. A Focus On section appears at the beginning of each systems chapter as a reference to use while reading the chapter. Each Focus On section includes the following:

š� Anatomy and Physiology provides a quick review of the body system.

š� Pediatric Differences will help you recognize physi- ologic and mental differences in children at various ages.

š� Diagnostic Tests and Laboratory Procedures offer information related to the specific body system to assist in clinical application.

š� Assessment Guides assist with diagnoses by incorpo- rating physical assessment and normal findings, altera- tions and possible causes, and guidelines for nursing interventions.

As Children Grow boxes illustrate the anatomic and physiologic differences between children and adults. These features illustrate how the child progresses through developmental stages and the important ways in which a child’s development influences healthcare needs.

Clinical Reasoning boxes provide brief case scenarios that ask students to determine the

appropriate response.

Chapter 11

Nursing Considerations for the Hospitalized Child

Learning Outcomes 11.1 Compare and contrast the child’s

understanding of health and illness according to the child’s developmental level.

11.2 Explain the effect of hospitalization on the child and family.

11.3 Describe the child’s and family’s adaption to hospitalization.

11.4 Apply family-centered care principles to the hospital setting.

11.5 Identify nursing strategies to minimize the stressors related to hospitalization.

11.6 Integrate the concept of family presence during procedures and nursing strategies used to prepare the family.

11.7 Summarize strategies for preparing children and families for discharge from the hospital setting.

We live 50 miles from the hospital and have three other chil- dren. We were worried about how we were going to be able to stay with Sabrina. She’s only 4, and it’s her first time in the hospital. Fortunately, they have beds for parents, so one of us can always be by her side throughout her procedure and recuperation. —Mother of Sabrina, 4 years old

Mel Curtis/Getty Images

Children are not just small adults. There are important anatomic and physiologic differences between children and adults that will change based on a child’s growth and development.

Body surface area large for weight, making infants susceptible to hypothermia.

Head proportionately larger, making child susceptible to head injury.

Higher metabolic rate, higher oxygen needs, higher caloric needs.

Until puberty, percentage of cartilage in ribs is higher, making them more flexible and compliant.

Until about 10 years, there is a faster respiratory rate, fewer and smaller alveoli, and less lung volume. Tidal volume is proportional to weight (7 to 10 mL/kg).

Up to about 4 or 5 years, diaphragm is primary breathing muscle. CO2 is not effectively expired when child is distressed, making child susceptible to metabolic acidosis.

Until puberty, bones are soft and more easily bent and fractured.

Muscles lack tone, power, and coordination during infancy. Muscles are 25% of weight in infants versus 40% in adults.

Anterior fontanelle and open sutures palpable up to about 18 months. Posterior fontanelle closes between 2 and 3 months.

Tongue large relative to small nasal and oral airway passages.

Short, narrow trachea in children under 5 years makes them susceptible to foreign body obstruction.

Abdomen offers poor protection for the liver and spleen, making them susceptible to trauma.

Until 12 to 18 months of age, kidneys do not concentrate urine effectively and do not exert optimal control over electrolyte secretion and absorption.

Until later school age, proportion of body weight in water is larger, with more water in extracellular spaces. Daily water exchange rate is much higher.

Blood volume is weight dependent: 80 mL/kg.

All brain cells present at birth; myelinization and further development of nerve fibers occur during first year.

Until late school age and adolescence, cardiac output is rate dependent not stroke volume dependent, making heart rate more rapid.

As Children Grow: Children Are Not Just Small Adults

Clinical Reasoning Health Promotion The pediatric nurse should apply concepts of health promo- tion and maintenance in all healthcare settings. If the child is seen in an emergency room for treatment of a fracture, what questions should the nurse ask about immunization status and safety issues? If the nurse sees a child with a chronic disorder of cerebral palsy in the outpatient clinic at an orthopedic hospital, what health promotion and health maintenance services should be integrated?

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Features to Help You Use This Textbook Successfully xv

Clinical Tip features offer hands-on sugges- tions and clinical advice. These are placed at locations in the text that will help students ap- ply them. They include topics such as legal and ethical considerations, nursing alerts, and home and community care considerations.

Clinical Tip Explain to the child and parents, in easy-to-understand terms, the purpose of equipment that is being used. Answer alarms quickly regardless of the reason for the alarm. Follow with an explanation of why alarms sound, including the fact that many times monitor alarms will sound when the child moves, if the monitor becomes disconnected, or if the monitor patches are loose.

Developing Cultural Competence boxes highlight specific cultural issues and their application to nursing care.

Developing Cultural Competence Smoking Rates Among Youth Among youth in the United States, White youth are sig- nificantly more likely to smoke than either Hispanic or African American peers. About 19% of White students reported smoking in the previous month, while 14% of Hispanic and 8% of African American students reported this behavior (CDC, 2014a). American Indian and Alaska Natives also have high smoking rates, while Asian Ameri- cans have low rates. Youth smoking rates also vary by state, ranging from 4% to 20% among various states (CDC, 2014a; USDHHS, 2011).

Evidence-Based Practice boxes present recent nursing re- search, discuss implications, and challenge students to incor- porate this information into nursing practice through nursing actions.

Clinical Question Many babies have limited sleeping periods during the night, and their night awakenings disturb parents’ sleep. Parents may have busy days and be unable to nap and, hence, possibly not be able to perform at a safe and productive level during the day. Parental stress and depression are associated with fre- quent child awakenings. What strategies are needed to assist them in supporting the infant’s sleep?

The Evidence Sleep of the infant is an important concern for many parents, but there is little research-based evidence about what strate- gies really improve infant sleep. A study of 314 twin pairs found that most sleep disturbances in early childhood are linked to environmental factors, and thus behavioral interventions with parents are suggested for altering infant sleep patterns (Bres- cianini, Volzone, Fagnani, et al., 2011). Consistent with these findings, a study evaluating 170 parents for knowledge of child sleep found that most parents could not answer the majority of questions correctly. The researchers suggested that evalu- ating parental knowledge and teaching about developmental progression of sleep patterns should occur during health visits

(Schreck & Richdale, 2011). A cross-cultural study found that parents from predominantly Asian countries were more likely to identify sleep disturbance in their children than those from countries with a majority of White parents. These findings sug- gest that information is needed about cultural differences in sleep expectations of parents (Sadeh, Mindell, & Rivera, 2011).

Best Practice This evidence-based practice provides implications for nurs- ing care. Ask parents of young newborns to record the infant sleep patterns. As the infant nears 3 to 4 months of age, pat- terns should demonstrate few night wakenings and feedings. Teach parents about how to minimize stimulation and interac- tion at night. Provide opportunities to review results at future health supervision visits, or offer telephone or other support to parents.

Clinical Reasoning What reasons might working parents have for responding eagerly and interacting with an infant who awakens at night? Do you think there are other reasons why infants awake at night? What clues help you to decide if an infant sleep problem exists?

EVIDENCE-BASED PRACTICE Infant Sleep

Families Want to Know features present special healthcare issues or problems and the related key teaching points

to address with the family.

Families Want to Know Ways to Decrease the Incidence of Cancer in Children Many parents ask what they can do to decrease the incidence of cancer in children as they grow into adulthood. Three major teaching areas should be addressed:

1. Have children increase intake of fruits and vegetables. Most children do not eat enough of these foods, and increased intake is associated with lower rates of many cancers. Aim for a minimum of five servings daily.

2. Protect skin with sunscreen. Early excessive exposure to sun, and having had one or repeated severe sunburns during child- hood, increases chances of skin cancers developing in adulthood. Tanning bed exposure is a prime risk factor for skin cancer; all children and adolescents, and particularly those with cancer, should strictly avoid tanning beds (Greinert & Boniol, 2011).

3. Discourage smoking among children and be sure children are not exposed to environmental tobacco smoke. This will decrease the future chance of developing lung cancer.

When there is a history of cancer in the family, particularly of a type associated with familial incidence such as some breast or ovarian cancers, encourage the family to learn more about the cancer and teach their children to receive regular surveillance as they enter young adulthood.

Inform youth in all families about screening, such as the Papanicolaou test, breast self-examination, and testicular examination that can lead to early detection. Encourage youth to receive the human papillomavirus quadrivalent vaccine recombinant (Gardasil) to prevent cervical cancers and other health problems caused by human papillomavirus (HPV). (See Chapter 16 for further information.)

Growth and Development boxes provide information about the different responses of children at various ages to health conditions.

Growth and Development Children with chronic illnesses such as JIA may develop increased dependence on their parents. It is essential that school-age chil- dren maintain as much independence as possible to promote their development of industry. These children should also have some responsibility for their treatment plan. Children with JIA may also need to miss school for periods of time. A plan should be devel- oped so that the child is able to keep up with school assignments. In addition, ongoing contact with peers should be maintained to promote the child’s social development.

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xvi Features to Help You Use This Textbook Successfully

Healthy People 2020 goals are cited throughout the text to ac- quaint students with national public health efforts and to assist them in making connections between care of individual fami- lies and broad-based community health care and public policy. The coding in front of each objective identifies the specific chapter—for example, “Maternal, Infant, and Child Health” (MICH); “Adolescent Health” (AH); and “Injury and Violence Prevention” (IVP)—and number for the initiative. See the Healthy People 2020 website to find the chapter abbreviations for all objectives listed in our text.

A feature titled Health Promotion summarizes the needs of children with specific chronic condi-

tions, such as asthma or diabetes. These over- views teach students that children with chronic

conditions, like all children, have health mainte- nance and promotion needs that require preven-

tion and education to maximize potential.

A Medications Used to Treat feature in tabular format provides an overview of the types of medications that can be used for a specific con- dition and nursing considerations associated with their use.

Healthy People 2020 (MICH-30.1) Increase the proportion of children who have access to a medical home

š� While 57.5% of children under age 18 years had an estab- lished medical home in 2007, the objective of 63.3% of children with such access is the present goal (U.S. Depart- ment of Health and Human Services, 2011).

496 Chapter 20

Health Promotion The Child With Bronchopulmonary Dysplasia

Health Supervision š� Assess blood pressure to detect abnormal findings associ-

ated with pulmonary hypertension. š� Coordinate vision screening by an ophthalmologist

every 2 to 3 months during the first year of life. Myopia and strabismus are common in children who were born prematurely.

š� Coordinate pulmonary function tests annually or as needed for clinical condition.

š� Perform hearing and other screening tests as recom- mended for age.

Growth and Developmental Surveillance š� Assess growth and plot measurements on a growth chart

corrected for gestational age. Even if length and weight are lower than normal, monitor for continued growth fol- lowing the growth curves.

š� Perform a developmental assessment, correcting for gestational age.

Nutrition š� Review caloric intake. Ensure that increased calories

are provided to support growth. Assess feeding dif- ficulties related to oral motor function associated with long-term enteral feeding. Refer to a nutritionist as necessary.

Physical Activity š� Organize care to provide rest periods during the day. š� Give parents ideas for promoting the infant’s motor devel-

opment, such as reaching for and moving toward toys and objects of interest.

Family Interactions š� Identify ways to coordinate nighttime care to reduce child

and family sleep disturbances. š� Provide discipline appropriate for developmental age.

Disease Prevention Strategies š� Reduce exposure to infections. Encourage selection

of a childcare provider who cares for a small number of children, if one is used. If possible, avoid the use of childcare centers during respiratory syncytial virus (RSV) season.

š� Immunize the child with the routine vaccine schedule based on chronologic age.

š� Administer the 23-valent pneumococcal vaccine at 2 years of age.

š� Provide monthly injections of palivizumab throughout the RSV season.

Condition-Specific Guidance š� Develop an emergency care plan for times when the

infant’s condition rapidly worsens.

Medications Used for Infective Endocarditis: Prophylaxis for Dental and Invasive Respiratory Procedures

ANTIBIOTIC RECOMMENDATIONS NURSING MANAGEMENT

Amoxicillin for oral use Ampicillin for IM or IV use If allergic to penicillin:

Cephalexin Clindamycin Azithromycin Clarithromycin

ŧ� Give 1 large dose 30–60 min before procedures, or up to 2 hr after the procedure if preprocedure dose is missed.

ŧ� Teach parents and the child to keep at least 1 dose in the home for dental visits or emergencies.

ŧ� Have parents inform each healthcare provider of the child’s need for prophylaxis.

Source: Data from American Academy of Pediatrics (AAP). (2015). Red book: 2015 report of the Committee on Infectious Diseases (30th ed., p. 971). Elk Grove Village, IL: Author; Sabe, M. A., Shrestha, N. K., & Menon, V. (2013). Contemporary drug treatment of infective endocarditis. American Journal of Cardiovascular Drugs, 13, 251–258; Park, M. K. (2014). Pediatric cardiology for practitioners (6th ed., p. 349). Philadelphia: Elsevier Saunders.

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Features to Help You Use This Textbook Successfully xvii

Nursing Care Plans are also provided. They address health conditions and illustrate the conceptual approach that nurses need in caring for children, including assessment, NANDA nursing diagnoses, goals, plans, and interventions.

Nursing Care Plan: The Child With a Visual Impairment Secondary to Retinopathy of Prematurity

GOAL: The child will receive adequate sensory input.

INTERVENTION RATIONALE ŧ� 3URYLGH�NLQHVWKHWLF��WDFWLOH��DQG�DXGLWRU\�VWLPXOD- WLRQ�GXULQJ�SOD\�DQG�LQ�GDLO\�FDUH��H�J��WDONLQJ�DQG� SOD\LQJ��3URYLGH�PXVLF�ZKLOH�EDWKLQJ�DQ�LQIDQW�� XVLQJ�EHOOV�DQG�RWKHU�QRLVHV�RQ�HDFK�VLGH�RI�LQ- IDQW��9HUEDOO\�GHVFULEH�WR�D�FKLOG�DOO�DFWLRQV�EHLQJ� FDUULHG�RXW�E\�DGXOW�

ŧ� %HFDXVH�YLVXDO�VHQVRU\�LQSXW�LV�QRW�SUHVHQW��WKH� FKLOG�QHHGV�LQSXW�IURP�DOO�RWKHU�VHQVHV�WR�FRP- SHQVDWH�DQG�SURYLGH�DGHTXDWH�VHQVRU\�VWLPXOD- WLRQ�

EXPECTED OUTCOME: Child will demonstrate minimal signs of sensory deprivation.

GOAL: The child will be protected from safety hazards that can lead to injury.

INTERVENTION RATIONALE ŧ� (YDOXDWH�HQYLURQPHQW�IRU�SRWHQWLDO�VDIHW\�KD]DUGV� EDVHG�RQ�DJH�RI�FKLOG�DQG�GHJUHH�RI�LPSDLUPHQW�� %H�SDUWLFXODUO\�DOHUW�WR�REMHFWV�WKDW�JLYH�YLVXDO� FXHV�WR�WKHLU�GDQJHUV��H�J��VWDLUV��VWRYHV��ƃUHSODF- HV��FDQGOHV��(OLPLQDWH�VDIHW\�KD]DUGV�DQG�SURWHFW� WKH�FKLOG�IURP�H[SRVXUH��7DNH�WKH�FKLOG�RQ�D�WRXU� RI�QHZ�URRPV��H[SODLQLQJ�VDIHW\�KD]DUGV��H�J�� VFKRROV��KRWHO�URRP��KRVSLWDO�URRP��

ŧ� 7KH�FKLOG�PD\�EH�DW�ULVN�IRU�LQMXU\�UHODWHG�ERWK�WR� GHYHORSPHQWDO�VWDJH�DQG�WR�LQDELOLW\�WR�YLVXDOL]H� KD]DUGV�

EXPECTED OUTCOME: Child will experience no injuries.

GOAL: The child has experiences necessary to foster normal growth and development.

INTERVENTION RATIONALE ŧ� +HOS�SDUHQWV�SODQ�HDUO\��UHJXODU�VRFLDO�DFWLYLWLHV� ZLWK�RWKHU�FKLOGUHQ�

ŧ� 3URYLGH�RSSRUWXQLWLHV�DQG�HQFRXUDJH�VHOI�IHHGLQJ� DFWLYLWLHV�

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ŧ� $VVHVV�JURZWK�DQG�GHYHORSPHQW�GXULQJ�UHJXODU� H[DPLQDWLRQV�WR�LGHQWLI\�WKH�FKLOGŠV�VWUHQJWKV�DQG� QHHGV�

ŧ� 7KH�FKLOG�ZLWK�D�YLVXDO�LPSDLUPHQW�EHQHƃWV�GHYHO- RSPHQWDOO\�IURP�FRQWDFW�ZLWK�RWKHU�FKLOGUHQ�

ŧ� 7R�REWDLQ�DGHTXDWH�QXWULHQWV��WKH�FKLOG�QHHGV�WR� IHHO�FRPIRUWDEOH�IHHGLQJ�VHOI�

ŧ� 6HQVRU\�LQSXW�LV�QHHGHG�IRU�QRUPDO�GHYHORSPHQW� WR�RFFXU�

ŧ� 5HJXODU�H[DPLQDWLRQV�DLG�LQ�HDUO\�LGHQWLƃFDWLRQ� RI�JURZWK�SUREOHPV�RU�GHYHORSPHQWDO�GHOD\V��VR� WKDW�DSSURSULDWH�LQWHUYHQWLRQV�FDQ�EH�SODQQHG�

EXPECTED OUTCOME: Child will demonstrate normal growth and development milestones.

GOAL: The family will identify methods for coping with their child with a visual impairment.

INTERVENTION RATIONALE

ŧ� 3URYLGH�H[SODQDWLRQ�RI�YLVXDO�LPSDLUPHQW�DV�DS- SURSULDWH�

ŧ� 5HIHU�SDUHQWV�WR�RUJDQL]DWLRQV��HDUO\�LQWHUYHQ- WLRQ�SURJUDPV��DQG�RWKHU�SDUHQWV�RI�FKLOGUHQ�ZLWK� YLVXDO�LPSDLUPHQWV�

ŧ� $VVLVW�SDUHQWV�WR�SODQ�IRU�PHHWLQJ�WKH�GHYHORS- PHQWDO��HGXFDWLRQDO��DQG�VDIHW\�QHHGV�RI�WKHLU� FKLOG�ZLWK�D�YLVXDO�LPSDLUPHQW��2ƂHU�UHVRXUFHV�IRU� FKDQJLQJ�KRPH�HQYLURQPHQW�WR�DVVLVW�FKLOG�

ŧ� 7KH�SDUHQWV�PD\�IHHO�JXLOW�DERXW�WKH�FKLOGŠV�YLVXDO� LPSDLUPHQW��ZKLFK�FDQ�EH�DOOD\HG�E\�NQRZOHGJH� RI�WKH�FDXVH�

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ŧ� 7KH�FKLOG�PD\�UHTXLUH�DQ�HQKDQFHG�HQYLURQPHQW� LQ�RUGHU�WR�IRVWHU�GHYHORSPHQWDO�SURJUHVV�

EXPECTED OUTCOME: Family will successfully cope with the experience of having a child with a visual impairment.

Pathophysiology Illustrated boxes feature unique draw- ings that illustrate conditions on a cellular or organ level, and may also portray the step-by-step process of a dis- ease. These images visually explain the pathophysiology of certain conditions to increase students’ understanding of the condition and its treatment.

Professionalism in Practice boxes focus on important topics related to contemporary nursing practice issues, including legal and ethical considerations. This feature reflects a commit- ment to quality improvement in all aspects of care.

The SAFETY ALERT! features present essential information that calls attention to issues that could place a patient or a nurse at risk and provide guidance on maintaining a safe envi- ronment for all patients and healthcare providers.

Pathophysiology Illustrated: Hypovolemic Shock

1. Blood loss from hemorrhage occurs or continues.

2. Signs and symptoms include altered responsiveness and cool extremities.

3. Blood pressure falls; if uncorrected, circulatory collapse results.

4. Tachycardia and vaso- constriction occur as the body attempts to compensate for falling blood pressure and flow.

5. Blood is shunted to vital organs in an attempt to maintain perfusion.

If hemorrhage reduces the circulating blood volume, the body compensates by increasing the heart rate and constricting the peripheral blood vessels. This allows the remaining blood to be circulated to the vital organs. When blood loss exceeds 20% to 25%, the child’s body can no longer compensate; blood pressure falls, and circulatory collapse is imminent.

Professionalism in Practice Accommodations for Children With JIA Section 504 of the Rehabilitation Act of 1973 and the Individ- uals with Disabilities Education Act (IDEA) protect children with disabilities from discrimination. A formal plan such as an individualized education plan (IEP) should be developed for the child with arthritis that outlines accommodations and modifications that are needed at school (Solomon, 2014). The school nurse can work with the family and school administration to determine the plan. Accommodations at school may include providing a set of books for the home so that the child is not required to carry the books home daily. Additional time may be required for the child to move from class to class. The school nurse can refer parents and chil- dren to the Arthritis Foundation and the American Juvenile Arthritis Organization for further information and support. The adolescent should also be referred for vocational coun- seling and offered support for transition to adult services.

SAFETY ALERT! If you feel a mass during palpation of a child’s abdomen, stop palpating immediately and report the finding to the child’s primary healthcare provider. Never palpate the liver or abdomen of a child with Wilms tumor as this could cause a piece of the tumor to dislodge. Place a sign on the child’s bed and in the chart alerting healthcare providers not to palpate the abdomen.

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xviii Features to Help You Use This Textbook Successfully

Each chapter ends with Chapter Highlights that outline the main points of the chapter and a list of References from which students can locate additional resources. In addition, the Clinical Reasoning in Action features at the end of each chapter propose a real-life scenario and a series of clinical reasoning questions so that you can apply to the clinical setting what you learned in class.

Where relevant, SKILLS found in the compan- ion book, Clinical Skills Manual for Maternity and Pediatric Nursing, Fifth Edition, are cited.

Chapter Highlights š� The hypothalamic-pituitary axis produces several releasing

and inhibiting hormones that regulate the function of many endocrine glands.

š� Puberty is the process of sexual maturation that occurs when the gonads secrete increased amounts of the sex hormones estrogen and testosterone, resulting in the development of pri- mary and secondary sexual characteristics.

š� Children with hypopituitarism have short stature as a result of growth hormone deficiency. Treatment with growth hormone early in life enables these children to potentially attain geneti- cally appropriate heights.

š� An excessive secretion of growth hormone or hyperpituitarism may cause children to have tall stature, growing up to 7 or 8 feet in height if no intervention is provided before the epiphy- seal plates close.

š� Diabetes insipidus is a disorder of the posterior pituitary gland and is defined as an inability of the kidneys to concentrate urine.

š� Syndrome of inappropriate antidiuretic hormone (SIADH) results from an excessive amount of serum antidiuretic hor- mone (ADH), leading to water intoxication and hyponatremia.

š� Precocious puberty is defined as the appearance of any sec- ondary sexual characteristics before 8 years in girls and 9 years in boys. If no treatment is provided, the hormones will stimulate closure of the epiphyseal plates and the child will have short stature as an adult.

š� Untreated or ineffectively treated congenital hypothyroidism results in impaired growth and intellectual disability.

š� Signs of hyperthyroidism include an enlarged, nontender thyroid gland (goiter), prominent or bulging eyes , eyelid lag, tachycardia, nervousness, increased appetite with weight loss, emotional lability, moodiness, heat intolerance, hypertension, hyperactivity, irregular menses, insomnia, tremor, and muscle weakness.

š� During infancy, most cases of endogenous Cushing disease are due to a functioning adrenocortical tumor. The most com- mon cause of endogenous Cushing syndrome in children older than 7 years of age is Cushing disease, in which a pituitary tumor (adenoma) secretes excess ACTH.

š� Congenital adrenal hyperplasia has two forms, salt-losing or non–salt-losing with virilization. The salt-losing form accounts for 75% of cases and is caused by aldosterone deficiency and overproduction of androgen. The non–salt-losing form accounts for the other 25% of cases.

š� Congenital adrenal hyperplasia is the most common cause of pseudohermaphroditism (ambiguous genitalia) in newborn girls.

š� Adrenal insufficiency, also known as Addison disease, is a rare disorder in childhood characterized by a deficiency of glucocorticoids (cortisone) and mineralocorticoids (aldoste- rone). Symptoms include weakness, fatigue, weight loss, and gastrointestinal symptoms such as nausea, vomiting, diarrhea, constipation, and abdominal pain. Other symptoms include hyperpigmentation, hypotension, dizziness, joint pain, salt cravings, and hypoglycemia.

š� Pheochromocytoma is a tumor that arises from the adrenal gland and causes an excessive release of catecholamines. Clinical manifestations include hypertension, palpitations sweating, anxiety, tremors, and headache.

š� Diabetes mellitus type 1 is the most common metabolic dis- ease in children and one of the most common chronic dis- eases in school-age children. It is a disorder of carbohydrate, protein, and fat metabolism.

š� Treatment of the child with diabetic ketoacidosis includes intravenous fluids and electrolytes for dehydration and acido- sis. Insulin is given by continuous infusion pump to decrease the serum glucose level at a slow but steady rate to prevent the development of cerebral edema.

š� Common causes of hypoglycemia in children with type 1 dia- betes include an error in insulin dosage, inadequate calories because of missed meals, or exercise without a corresponding increase in caloric intake.

š� Type 2 diabetes mellitus is a condition that results from insulin resistance. Children most commonly affected are obese, and many have family members with the same type of diabetes.

š� Secondary amenorrhea is the cessation of spontaneous men- strual periods for at least 120 days and occurs 6 months or 3 cycles after menarche.

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xix

Contents

Dedication iii About The Authors v Thank You! vii Preface ix Acknowledgments xiii

1 Nurse’s Role in Care of the Child: Hospital, Community, and Home 1

Pediatric Healthcare Overview 1 Role of the Nurse in Pediatrics 2

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Nursing Process in Pediatric Care 4 &OLQLFDO�5HDVRQLQJ� �� š� (YLGHQFH�%DVHG�3UDFWLFH� �

Settings for Pediatric Nursing Care 5 Contemporary Climate for Pediatric Nursing Care 5

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Pediatric Health Statistics 6 0RUWDOLW\� �� š� 0RUELGLW\� �

Healthcare Issues 8 +HDOWKFDUH�)LQDQFLQJ� �� š� +HDOWKFDUH�7HFKQRORJ\� �

Legal Concepts and Responsibilities 9 5HJXODWLRQ�RI�1XUVLQJ�3UDFWLFH� �� š� $FFRXQWDELOLW\� and Risk Management 9

Legal and Ethical Issues in Pediatric Care 11 ,QIRUPHG�&RQVHQW� �� š� &KLOG�3DUWLFLSDWLRQ�LQ� +HDOWKFDUH�'HFLVLRQV� �� š� &KLOGŖV�5LJKWV�9HUVXV�3DUHQWVŖ� 5LJKWV� �� š� 3DWLHQW�6HOI�'HWHUPLQDWLRQ�$FW� �� š� (WKLFDO�,VVXHV� �� š� 3DUWQHULQJ�:LWK�)DPLOLHV� ��

2 Family-Centered Care and Cultural Considerations 17

Family and Family Roles 17 Family-Centered Care 18

+LVWRU\�RI�)DPLO\�&HQWHUHG�&DUH� �� š� 3URPRWLQJ� Family-Centered Care 18

Family Composition 19 Family Functioning 21

7UDQVLWLRQ�WR�3DUHQWKRRG� �� š� 3DUHQWDO�,QIOXHQFHV�RQ� WKH�&KLOG� �� š� )DPLO\�6L]H� �� š� 6LEOLQJ� Relationships 22

Parenting 22 $XWKRULWDULDQ�3DUHQWV� �� š� $XWKRULWDWLYH� 3DUHQWV� �� š� 3HUPLVVLYH�3DUHQWV� �� š� ,QGLIIHUHQW� 3DUHQWV� �� š� 3DUHQW�$GDSWDELOLW\� �� š� $VVHVVLQJ� 3DUHQWLQJ�6W\OHV� �� š� 'LVFLSOLQH�DQG�/LPLW� Setting 24

Special Family Considerations 25 'LYRUFH�DQG�,WV�(IIHFWV�RQ�&KLOGUHQ� �� š� Stepparenting 26

Foster Care 26 )RVWHU�3DUHQWLQJ� �� š� +HDOWK�6WDWXV�RI�)RVWHU� &KLOGUHQ� �� š� 7UDQVLWLRQ�WR�3HUPDQHQW� Placement 27

Adoption 27 /HJDO�$VSHFWV�RI�$GRSWLRQ� �� š� 3UHSDUDWLRQ� IRU�$GRSWLRQ� �� š� 5HVSRQVHV�E\�$GRSWHG� &KLOGUHQ� �� š� ,QWHUQDWLRQDO�$GRSWLRQV� ��

Family Theories 29 )DPLO\�'HYHORSPHQW�7KHRU\� �� š� )DPLO\�6\VWHPV� 7KHRU\� �� š� )DPLO\�6WUHVV�7KHRU\� ��

Family Assessment 31 )DPLO\�6WUHVVRUV� �� š� )DPLO\�6WUHQJWKV� �� š� &ROOHFWLQJ�'DWD�IRU�)DPLO\�$VVHVVPHQW� �� š� )DPLO\� Assessment Tools 32

Cultural Considerations 33 &XOWXUDO�$VVHVVPHQW� �� š� &XOWXUDO�3UDFWLFHV�7KDW� Influence Health Care 35

Complementary and Alternative Modalities 38 Safety Issues Concerning CAM Therapies 39

3 Genetic and Genomic Influences 45 Partnering With Families: Meeting the Standard of Genetic Nursing Care Delivery 45

Impact of Genetic Advances on Health Promotion and Health Maintenance 47

Genetic Basics 48 &HOO�'LYLVLRQ� �� š� &KURPRVRPDO� $OWHUDWLRQV� �� š� *HQHV� ��

Principles of Inheritance 51 &ODVVLF�0HQGHOLDQ�3DWWHUQV�RI�,QKHULWDQFH� �� š� Variability in Classic Mendelian Patterns of ,QKHULWDQFH� �� š� 0XOWLIDFWRULDO�,QKHULWDQFH� ��

Collaborative Care 55 'LDJQRVWLF�3URFHGXUHV� �� š� 4XDOLW\�DQG�$FFXUDF\� of Genetic Tests 57

Visions for the Future 63

4 Growth and Development 66 Principles of Growth and Development 66 Major Theories of Development 68

)UHXGŖV�7KHRU\�RI�3V\FKRVH[XDO�'HYHORSPHQW� �� š� (ULNVRQŖV�7KHRU\�RI�3V\FKRVRFLDO�'HYHORSPHQW� �� š� 3LDJHWŖV�7KHRU\�RI�&RJQLWLYH�'HYHORSPHQW� �� š� .RKOEHUJŖV�7KHRU\�RI�0RUDO�'HYHORSPHQW� �� š� 6RFLDO�/HDUQLQJ�7KHRU\� �� š� %HKDYLRULVP� �� š�

$��B%$//��B��B6(B)0�LQGG�� DP

xx Contents

(FRORJLF�7KHRU\� �� š� 7HPSHUDPHQW�7KHRU\� �� š� Resiliency Theory 77

Influences on Development 77 Infant (Birth to 1 Year) 79

3K\VLFDO�*URZWK�DQG�'HYHORSPHQW� �� š� &RJQLWLYH� �'HYHORSPHQW� �� š� 3V\FKRVRFLDO�'HYHORSPHQW� ��

Toddler (1 to 3 Years) 85 3K\VLFDO�*URZWK�DQG�'HYHORSPHQW� �� š� &RJQLWLYH� 'HYHORSPHQW� �� š� 3V\FKRVRFLDO�'HYHORSPHQW� ��

Preschool Child (3 to 6 Years) 87 3K\VLFDO�*URZWK�DQG�'HYHORSPHQW� �� š� &RJQLWLYH� 'HYHORSPHQW� �� š� 3V\FKRVRFLDO�'HYHORSPHQW� ��

School-Age Child (6 to 12 Years) 91 3K\VLFDO�*URZWK�DQG�'HYHORSPHQW� �� š� &RJQLWLYH� 'HYHORSPHQW� �� š� 3V\FKRVRFLDO�'HYHORSPHQW� ��

Adolescent (12 to 18 Years) 94 3K\VLFDO�*URZWK�DQG�'HYHORSPHQW� �� š� &RJQLWLYH� 'HYHORSPHQW� �� š� 3V\FKRVRFLDO�'HYHORSPHQW� ��

5 Pediatric Assessment 98 Anatomic and Physiologic Characteristics of Infants and Children 98 Obtaining the Child’s History 98

&RPPXQLFDWLRQ�6WUDWHJLHV� �� š� 'DWD�WR�%H�&ROOHFWHG� �� š� 'HYHORSPHQWDO�$SSURDFK�WR�WKH� Examination 103

General Appraisal 105 Assessing Skin and Hair Characteristics 105

,QVSHFWLRQ�RI�WKH�6NLQ� �� š� 3DOSDWLRQ�RI�WKH� 6NLQ� �� š� &DSLOODU\�5HILOO�7LPH� �� š� 6NLQ� /HVLRQV� �� š� ,QVSHFWLRQ�RI�WKH�+DLU� �� š� Palpation of the Hair 107

Assessing the Head for Skull Characteristics and Facial Features 108

,QVSHFWLRQ�RI�WKH�+HDG�DQG�)DFH� �� š� 3DOSDWLRQ� of the Skull 109

Assessing Eye Structures, Function, and Vision 109 ,QVSHFWLRQ�RI�WKH�([WHUQDO�(\H�6WUXFWXUHV� �� š� 9LVLRQ� $VVHVVPHQW� �� š� ,QVSHFWLRQ�RI�WKH�,QWHUQDO�(\H� Structures 112

Assessing the Ear Structures and Hearing 112 ,QVSHFWLRQ�RI�WKH�([WHUQDO�(DU�6WUXFWXUHV� �� š� ,QVSHFWLRQ�RI�WKH�7\PSDQLF�0HPEUDQH� �� š� +HDULQJ� Assessment 113

Assessing the Nose and Sinuses for Airway Patency and Discharge 115

,QVSHFWLRQ�RI�WKH�([WHUQDO�1RVH� �� š� 3DOSDWLRQ� RI�WKH�([WHUQDO�1RVH� �� š� $VVHVVPHQW� RI�6PHOO� �� š� ,QVSHFWLRQ�RI�WKH�,QWHUQDO� 1RVH� �� š� ,QVSHFWLRQ�RI�WKH�6LQXVHV� ��

Assessing the Mouth and Throat for Color, Function, and Signs of Abnormal Conditions 117

,QVSHFWLRQ�RI�WKH�0RXWK� �� š� 3DOSDWLRQ�RI� WKH�0RXWK�6WUXFWXUHV� �� š� ,QVSHFWLRQ�RI�WKH� Throat 118

Assessing the Neck for Characteristics, Range of Motion, and Lymph Nodes 118

,QVSHFWLRQ�RI�WKH�1HFN� �� š� 3DOSDWLRQ�RI�WKH� 1HFN� �� š� 5DQJH�RI�0RWLRQ�$VVHVVPHQW� ��

Assessing the Chest for Shape, Movement, Respiratory Effort, and Lung Function 120

,QVSHFWLRQ�RI�WKH�&KHVW� �� š� 3DOSDWLRQ�RI�WKH� &KHVW� �� š� $XVFXOWDWLRQ�RI�WKH�&KHVW� �� š� Percussion of the Chest 123

Assessing the Breasts 124 ,QVSHFWLRQ�RI�WKH�%UHDVWV� �� š� 3DOSDWLRQ�RI�WKH� Breasts 124

Assessing the Heart for Heart Sounds and Function 124 ,QVSHFWLRQ�RI�WKH�3UHFRUGLXP� �� š� 3DOSDWLRQ� RI�WKH�3UHFRUGLXP� �� š� +HDUW�5DWH� DQG�5K\WKP� �� š� �$XVFXOWDWLRQ�RI�WKH� +HDUW� �� š� �&RPSOHWLQJ�WKH�+HDUW�([DPLQDWLRQ� ��

Assessing the Abdomen for Shape, Bowel Sounds, and Underlying Organs 127

,QVSHFWLRQ�RI�WKH�$EGRPHQ� �� š� $XVFXOWDWLRQ� RI�WKH�$EGRPHQ� �� š� 3HUFXVVLRQ�RI� WKH�$EGRPHQ� �� š� 3DOSDWLRQ�RI�WKH� $EGRPHQ� �� š� $VVHVVPHQW�RI�WKH�,QJXLQDO� Area 128

Assessing the Genital and Perineal Areas for External Structural Abnormalities 128

Inspection of the Female External *HQLWDOLD� �� š� ,QVSHFWLRQ�RI�WKH�0DOH� *HQLWDOLD� �� š� 3DOSDWLRQ�RI�WKH�0DOH� *HQLWDOLD� �� š� $QXV�DQG�5HFWXP� ��

Assessing Pubertal Development and Sexual Maturation 130

*LUOV� �� š� %R\V� �� š� 6H[XDO�0DWXULW\� Timeline 131

Assessing the Musculoskeletal System for Bone and Joint Structure, Movement, and Muscle Strength 132

,QVSHFWLRQ�RI�WKH�%RQHV��0XVFOHV��DQG�-RLQWV� �� š� 3DOSDWLRQ�RI�WKH�%RQHV��0XVFOHV��DQG�-RLQWV� �� š� 5DQJH�RI�0RWLRQ�DQG�0XVFOH�6WUHQJWK�$VVHVVPHQW� �� š� 3RVWXUH�DQG�6SLQDO�$OLJQPHQW� �� š� ,QVSHFWLRQ�RI� WKH�8SSHU�([WUHPLWLHV� �� š� ,QVSHFWLRQ�RI�WKH�/RZHU� Extremities 134

Assessing the Nervous System 134 &RJQLWLYH�)XQFWLRQ� �� š� &HUHEHOODU� )XQFWLRQ� �� š� &UDQLDO�1HUYH�)XQFWLRQ� �� š� 6HQVRU\�)XQFWLRQ� �� š� &RPPRQ�1HZERUQ� 5HIOH[HV� �� š� 6XSHUILFLDO�DQG�'HHS�7HQGRQ� Reflexes 140

Performing an Intermittent Examination 141 Analyzing Data From the Physical Examination 142

6 Introduction to Health Promotion and Maintenance 144

General Concepts 145 Components of Health Promotion/Health Maintenance Visits 147

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Contents xxi

7 Health Promotion and Maintenance for the Newborn and Infant 154

Health Promotion and Maintenance for the Newborn and Infant 154

(DUO\�&RQWDFWV�:LWK�WKH�)DPLO\� �� š� *HQHUDO� �2EVHUYDWLRQV� �� š� *URZWK�DQG�'HYHORSPHQWDO� �6XUYHLOODQFH� �� š� 1XWULWLRQ� �� š� 3K\VLFDO� �$FWLYLW\� �� š� 2UDO�+HDOWK� �� š� 0HQWDO�DQG� 6SLULWXDO�+HDOWK� �� š� 5HODWLRQVKLSV� �� š� 'LVHDVH�3UHYHQWLRQ�6WUDWHJLHV� �� š� ,QMXU\� Prevention Strategies 161

8 Health Promotion and Maintenance for the Toddler and Preschooler 166

Health Promotion and Maintenance for the Toddler and Preschooler 166

*HQHUDO�2EVHUYDWLRQV� �� š� *URZWK�DQG� 'HYHORSPHQWDO�6XUYHLOODQFH� �� š� 1XWULWLRQ� �� š� 3K\VLFDO�$FWLYLW\� �� š� 2UDO�+HDOWK� �� š� 0HQWDO� DQG�6SLULWXDO�+HDOWK� �� š� 5HODWLRQVKLSV� �� š� 'LVHDVH�3UHYHQWLRQ�6WUDWHJLHV� �� š� ,QMXU\� Prevention Strategies 174

9 Health Promotion and Maintenance for the School-Age Child and Adolescent 182

Health Promotion and Maintenance for the School-Age Child 182

Health Promotion and Maintenance for the Adolescent 195 *HQHUDO�2EVHUYDWLRQV� �� š� *URZWK�DQG�� 'HYHORSPHQWDO�6XUYHLOODQFH� �� š� 1XWULWLRQ� �� š� 3K\VLFDO��$FWLYLW\� �� š� 2UDO�+HDOWK� �� š� 0HQWDO� DQG�6SLULWXDO�+HDOWK� �� š� 5HODWLRQVKLSV� �� š� 'LVHDVH�3UHYHQWLRQ�6WUDWHJLHV� �� š� ,QMXU\� Prevention Strategies 202

10 Nursing Considerations for the Child in the Community 207

Community-Based Health Care 207 Community Healthcare Settings 208

Nursing Roles in the Office or Healthcare Center 6HWWLQJ� �� š� 1XUVLQJ�5ROHV�LQ�WKH�6SHFLDOW\� +HDOWKFDUH�6HWWLQJ� �� š� 1XUVLQJ�5ROHV�LQ�WKH� 6FKRRO�6HWWLQJ� �� š� 1XUVLQJ�5ROHV�LQ�WKH�&KLOGFDUH� 6HWWLQJ� �� š� 1XUVLQJ�5ROHV�LQ�WKH�+RPH�+HDOWKFDUH� Setting 213

Assessment of Community Needs and Resources 216 &RPPXQLW\�$VVHVVPHQW� �� š� 3ODQQLQJ�DQG� Evaluation 217

Preparation for Disasters 217 &OLQLFDO�0DQLIHVWDWLRQV� �� š� &OLQLFDO� Therapy 218

11 Nursing Considerations for the Hospitalized Child 222

Effects of Hospitalization on Children and Their Families 223 Children’s Understanding of Health and ,OOQHVV� �� š� )DPLO\�5HVSRQVHV�WR� +RVSLWDOL]DWLRQ� �� š� )DPLO\�$VVHVVPHQW� ��

Nurse’s Role in the Child’s Adaptation to Hospitalization 228

3ODQQHG�+RVSLWDOL]DWLRQ� �� š� 8QH[SHFWHG� Hospitalization 229

Nursing Care of the Hospitalized Child 230 6SHFLDO�8QLWV�DQG�7\SHV�RI�&DUH� �� š� 3DUHQWDO� ,QYROYHPHQW�DQG�3DUHQWDO�3UHVHQFH� �� š� 3HUIRUPLQJ�WKH�3URFHGXUH� �� š� 3UHSDUDWLRQ�IRU� Surgery 234

Strategies to Promote Coping and Normal Development of the Hospitalized Child 238

5RRPLQJ�,Q� �� š� &KLOG�/LIH� 3URJUDPV� �� š� 7KHUDSHXWLF�3OD\� �� š� 7KHUDSHXWLF�5HFUHDWLRQ� �� š� 6WUDWHJLHV�WR�0HHW� Educational Needs 241

Preparation for Home Care 243 Assessing the Child and Family in Preparation for 'LVFKDUJH� �� š� 3UHSDULQJ�WKH�)DPLO\�IRU�+RPH� &DUH� �� š� 3UHSDULQJ�3DUHQWV�WR�$FW�DV�&DVH� Managers 243

12 The Child With a Chronic Condition 246

Overview of Chronic Conditions 246 Role of the Nurse 248

The Child With a Newly Diagnosed Chronic &RQGLWLRQ� �� š� 'LVFKDUJH�3ODQQLQJ�DQG�+RPH�&DUH� 7HDFKLQJ� �� š� &RRUGLQDWLRQ�RI�&DUH� ��

Community Sites of Care 253 2IILFH�RU�+HDOWK�&HQWHU� �� š� 6SHFLDOW\�5HIHUUDO� &HQWHUV� �� š� 6FKRROV� �� š� +RPH�&DUH� ��

13 The Child With a Life-Threatening Condition and End-of-Life Care 260

Life-Threatening Illness or Injury 260 Child’s Experience 261

Coping Mechanisms 261 Parents’ Experience of a Child’s Life-Threatening Illness or Injury 264

7KH�)DPLO\�LQ�&ULVLV� �� š� 3DUHQWDO�5HDFWLRQV�WR� Life-Threatening Illness or Injury 265

The Siblings’ Experience 268 End-of-Life Care 269

Palliative and Hospice Care 269 Ethical Issues Surrounding a Child’s Death 269

%UDLQ�'HDWK�&ULWHULD� �� š� :LWKGUDZDO�RI�RU� :LWKKROGLQJ�7UHDWPHQW� �� š� 'R�1RW�5HVXVFLWDWH� Orders 271

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Care of the Dying Child 271 Awareness of Dying by Developmental Age 271

Bereavement 276 3DUHQWVŖ�5HDFWLRQV� �� š� 6XGGHQ�'HDWK�RI�D� &KLOG� �� š� 'HDWK�RI�D�1HZERUQ�RU�<RXQJ� ,QIDQW� �� š� *ULHI�DQG�%HUHDYHPHQW� �� š� 6LEOLQJVŖ�5HDFWLRQV� �� š� 6WDII�5HDFWLRQV�WR�WKH� Death of a Child 278

14 Infant, Child, and Adolescent Nutrition 281

General Nutrition Concepts 281 Nutritional Needs 282

,QIDQF\� �� š� 7RGGOHUKRRG� �� š� 3UHVFKRRO� �� š� 6FKRRO�$JH� �� š� Adolescence 288

Nutritional Assessment 289 3K\VLFDO�DQG�%HKDYLRUDO�0HDVXUHPHQW� �� š� 'LHWDU\� Intake 290

Common Nutritional Concerns 292 &KLOGKRRG�+XQJHU� �� š� 2YHUZHLJKW�DQG� 2EHVLW\� �� š� )RRG�6DIHW\� �� š� &RPPRQ�'LHWDU\� 'HILFLHQFLHV� �� š� &HOLDF�'LVHDVH� �� š� )HHGLQJ� DQG�(DWLQJ�'LVRUGHUV� �� š� )RRG�5HDFWLRQV� �� š� Lactose Intolerance 304

Nutritional Support 305 6SRUWV�1XWULWLRQ�DQG�(UJRJHQLF�$JHQWV� �� š� +HUEV�� 3URELRWLFV��DQG�3UHELRWLFV� �� š� +HDOWK�5HODWHG� &RQGLWLRQV� �� š� 9HJHWDULDQLVP� �� š� (QWHUDO� 7KHUDS\� �� š� 7RWDO�3DUHQWHUDO�1XWULWLRQ��731��

15 Pain Assessment and Management in Children 310

Pain 310 0LVFRQFHSWLRQV�$ERXW�3DLQ�LQ�&KLOGUHQ� �� š� Developmental Aspects of Pain Perception, Memory, DQG�5HVSRQVH� �� š� &XOWXUDO�,QIOXHQFHV�RQ� 3DLQ� �� š� &RQVHTXHQFHV�RI�3DLQ� ��

Pain Assessment 314 3DLQ�+LVWRU\� �� š� 3DLQ�$VVHVVPHQW�7RROV� ��

Acute Pain 317 &OLQLFDO�0DQLIHVWDWLRQV� �� š� &OLQLFDO� �7KHUDS\� �� š� 1RQSKDUPDFRORJLF�0HWKRGV�RI�3DLQ� Management 322

Chronic Pain 328 &OLQLFDO�0DQLIHVWDWLRQV� �� š� &OLQLFDO�7KHUDS\� ��

Sedation and Analgesia for Medical Procedures 329

16 Immunizations and Communicable Diseases 333

Special Vulnerability of Infants and Children 333 Public Health and Communicable Diseases 334 Immunization 335

&OLQLFDO�0DQLIHVWDWLRQV� �� š� &ROODERUDWLYH� Care 340

Communicable Diseases in Children 348 Clinical Manifestations 348

Sepsis and Septic Shock 364 Emerging Infection Control Threats 364

17 Social and Environmental Influences on the Child 367

Basic Concepts 368 Social Influences on Child Health 368

3RYHUW\� �� š� 6WUHVV� �� š� )DPLOLHV� �� š� 6FKRRO�DQG�&KLOG�&DUH� �� š� &RPPXQLW\� �� š� Culture 373

Lifestyle Activities and Their Influence on Child Health 374

7REDFFR�8VH� �� š� $OFRKRO�8VH� �� š� 'UXJ� 8VH� �� š� 3K\VLFDO�,QDFWLYLW\�DQG�6HGHQWDU\� �%HKDYLRU� �� š� ,QMXU\�DQG�3URWHFWLYH� (TXLSPHQW� �� š� %RG\�$UW� �� š� 6H[XDO� Orientation 383

Effects of Violence 384 6FKRROV�DQG�&RPPXQLWLHV� �� š� %XOO\LQJ� �� š� ,QFDUFHUDWLRQ� �� š� +D]LQJ� �� š� 'RPHVWLF� 9LROHQFH� �� š� 'DWLQJ�9LROHQFH� ��

Child Abuse 388 3K\VLFDO�$EXVH� �� š� 3K\VLFDO� 1HJOHFW� �� š� $EDQGRQHG�%DELHV� �� š� (PRWLRQDO�$EXVH� �� š� (PRWLRQDO� 1HJOHFW� �� š� 6H[XDO�$EXVH� �� š� 0ĞQFKDXVHQ� Syndrome by Proxy (Factitious Disorder) 393

Environmental Influences On Child Health 394 (QYLURQPHQWDO�&RQWDPLQDQWV� �� š� 3RLVRQLQJ� �� š� ,QJHVWLRQ�RI�)RUHLJQ� �2EMHFWV� �� š� /HDG�3RLVRQLQJ� ��

18 Alterations in Fluid, Electrolyte, and Acid–Base Balance 404

Extracellular Fluid Volume Imbalances 409 Extracellular Fluid Volume Deficit �'HK\GUDWLRQ�� š� ([WUDFHOOXODU�)OXLG�9ROXPH� ([FHVV� �� š� ,QWHUVWLWLDO�)OXLG�9ROXPH�([FHVV� (Edema) 418

Sodium Imbalances 420 +\SHUQDWUHPLD� �� š� +\SRQDWUHPLD� ��

Potassium Imbalances 423 +\SHUNDOHPLD� �� š� +\SRNDOHPLD� ��

Calcium Imbalances 427 +\SHUFDOFHPLD� �� š� +\SRFDOFHPLD� ��

Magnesium Imbalances 430 +\SHUPDJQHVHPLD� �� š� �+\SRPDJQHVHPLD� ��

Acid–Base Imbalances 432 5HVSLUDWRU\�$FLGRVLV� �� š� 5HVSLUDWRU\� �$ONDORVLV� �� š� 0HWDEROLF�$FLGRVLV� �� š� 0HWDEROLF� $ONDORVLV� �� š� 0L[HG�$FLGş%DVH�,PEDODQFHV� ��

xxii Contents

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19 Alterations in Eye, Ear, Nose, and Throat Function 440

Disorders of the Eye 440 ,QIHFWLRXV�&RQMXQFWLYLWLV� �� š� 3HULRUELWDO� &HOOXOLWLV� �� š� 9LVXDO�'LVRUGHUV� �� š� &RORU� %OLQGQHVV� �� š� 5HWLQRSDWK\�RI� 3UHPDWXULW\� �� š� 9LVXDO�,PSDLUPHQW� �� š� Injuries of the Eye 455

Disorders of the Ear 455 2WLWLV�0HGLD� �� š� 2WLWLV�([WHUQD� �� š� +HDULQJ� ,PSDLUPHQW� �� š� ,QMXULHV�RI�WKH�(DU� ��

Disorders of the Nose and Throat 465 (SLVWD[LV� �� š� 1DVRSKDU\QJLWLV� �� š� 6LQXVLWLV� �� š� 3KDU\QJLWLV� �� š� 7RQVLOOLWLV�DQG� Adenoiditis 469

Disorders of the Mouth 471

20 Alterations in Respiratory Function 474 Respiratory Distress and Respiratory Failure 474

)RUHLJQ�%RG\�$VSLUDWLRQ� �� š� 5HVSLUDWRU\� Failure 480

Apnea 481 $SSDUHQW�/LIH�7KUHDWHQLQJ�(YHQW��$/7(�� š� 2EVWUXFWLYH�6OHHS�$SQHD� �� š� Sudden Infant Death Syndrome 483

Croup Syndromes 485 Lower Airway Disorders 488

%URQFKLWLV� �� š� %URQFKLROLWLV�DQG�5HVSLUDWRU\� 6\QF\WLDO�9LUXV� �� š� 3QHXPRQLD� �� š� Tuberculosis 492

Chronic Lung Conditions 493 Bronchopulmonary Dysplasia (Chronic Lung 'LVHDVH�� š� $VWKPD� �� š� &\VWLF�)LEURVLV� ��

Injuries of the Respiratory System 512 6PRNH�,QKDODWLRQ�,QMXU\� �� š� %OXQW� &KHVW�7UDXPD� �� š� 3XOPRQDU\� &RQWXVLRQ� �� š� 3QHXPRWKRUD[� ��

21 Alterations in Cardiovascular Function 518

Congenital Heart Disease 522 (WLRORJ\�DQG�3DWKRSK\VLRORJ\� �� š� &OLQLFDO� 0DQLIHVWDWLRQV� �� š� &OLQLFDO�7KHUDS\� ��

Congenital Heart Defects That Increase Pulmonary Blood Flow 525

(WLRORJ\�DQG�3DWKRSK\VLRORJ\� �� š� &OLQLFDO� 0DQLIHVWDWLRQV� �� š� &OLQLFDO�7KHUDS\� ��

Defects Causing Decreased Pulmonary Blood Flow and Mixed Defects 530

(WLRORJ\�DQG�3DWKRSK\VLRORJ\� �� š� &OLQLFDO� 0DQLIHVWDWLRQV� �� š� &OLQLFDO�7KHUDS\� ��

Defects Obstructing Systemic Blood Flow 539 (WLRORJ\�DQG�3DWKRSK\VLRORJ\� �� š� &OLQLFDO� 0DQLIHVWDWLRQV� �� š� &OLQLFDO�7KHUDS\� ��

Congestive Heart Failure 542 (WLRORJ\�DQG�3DWKRSK\VLRORJ\� �� š� &OLQLFDO� 0DQLIHVWDWLRQV� �� š� &OLQLFDO�7KHUDS\� ��

Acquired Heart Diseases 547 &DUGLRP\RSDWK\� �� š� +HDUW�7UDQVSODQWD- WLRQ� �� š� 3XOPRQDU\�$UWHU\�+\SHUWHQVLRQ� �� š� ,QIHFWLYH�(QGRFDUGLWLV� �� š� $FXWH�5KHXPDWLF� )HYHU� �� š� .DZDVDNL�'LVHDVH� �� š� &DUGLDF� $UUK\WKPLDV� �� š� '\VOLSLGHPLD� �� š� Hypertension 556

Injuries of the Cardiovascular System 556 6KRFN� �� š� +\SRYROHPLF�6KRFN� �� š� 'LVWULEXWLYH�6KRFN� �� š� 2EVWUXFWLYH�6KRFN� �� š� &DUGLRJHQLF�6KRFN� �� š� 0\RFDUGLDO�&RQWXVLRQ� �� š� Commotio Cordis 560

22 Alterations in Immune Function 563 Immunodeficiency Disorders 563

%�&HOO�DQG�7�&HOO�'LVRUGHUV� �� š� 6HYHUH�&RPELQHG� ,PPXQRGHILFLHQF\�'LVHDVH� �� š� :LVNRWW�$OGULFK� 6\QGURPH� �� š� +XPDQ�,PPXQRGHILFLHQF\�9LUXV� and Acquired Immune Deficiency Syndrome 569

Autoimmune Disorders 578 6\VWHPLF�/XSXV�(U\WKHPDWRVXV� �� š� -XYHQLOH� Idiopathic Arthritis 581

Allergic Reactions 583 Latex Allergy 585

Graft-Versus-Host Disease 585

23 Alterations in Hematologic Function 589

Anemias 589 ,URQ�'HILFLHQF\�$QHPLD� �� š� 1RUPRF\WLF� $QHPLD� �� š� 6LFNOH�&HOO�'LVHDVH� �� š� 7KDODVVHPLDV� �� š� +HUHGLWDU\�6SKHURF\WRVLV� �� š� Aplastic Anemia 602

Bleeding Disorders 602 +HPRSKLOLD� �� š� 9RQ�:LOOHEUDQG� 'LVHDVH� �� š� 'LVVHPLQDWHG�,QWUDYDVFXODU� &RDJXODWLRQ� �� š� ,PPXQH�7KURPERF\WRSHQLF� Purpura 605

Hematopoietic Stem Cell Transplantation 605

24 The Child With Cancer 610 Childhood Cancer 613

,QFLGHQFH� �� š� (WLRORJ\�DQG� 3DWKRSK\VLRORJ\� �� š� &OLQLFDO� 0DQLIHVWDWLRQV� �� š� 'LDJQRVWLF�7HVWV� �� š� &OLQLFDO�7KHUDS\� �� š� 6SHFLDO�,VVXHV�LQ�&KLOGKRRG� Cancer 622

Solid Tumors 636 %UDLQ�7XPRUV� �� š� 1HXUREODVWRPD� �� š� :LOPV� Tumor (Nephroblastoma) 641

Contents xxiii

$��B%$//��B��B6(B)0�LQGG�� DP

Bone Tumors 643 2VWHRVDUFRPD� �� š� (ZLQJ�6DUFRPD� ��

Leukemia 645 (WLRORJ\�DQG�3DWKRSK\VLRORJ\� �� š� &OLQLFDO� 0DQLIHVWDWLRQV� �� š� &OLQLFDO�7KHUDS\� ��

Soft-Tissue Tumors 648 +RGJNLQ�'LVHDVH� �� š� 1RQ�+RGJNLQ� /\PSKRPD� �� š� 5KDEGRP\RVDUFRPD� �� š� Retinoblastoma 650

25 Alterations in Gastrointestinal Function 655

Structural Defects 655 &OHIW�/LS�DQG�&OHIW�3DODWH� �� š� (VRSKDJHDO�$WUHVLD� DQG�7UDFKHRHVRSKDJHDO�)LVWXOD� �� š� 3\ORULF� 6WHQRVLV� �� š� *DVWURHVRSKDJHDO�5HIOX[� �� š� 2PSKDORFHOH�DQG�*DVWURVFKLVLV� �� š� ,QWXVVXVFHSWLRQ� �� š� 9ROYXOXV� �� š� +LUVFKVSUXQJ�'LVHDVH� �� š� $QRUHFWDO�0DOIRUPDWLRQV� �� š� +HUQLDV� ��

Ostomies 674 Inflammatory Disorders 675

$SSHQGLFLWLV� �� š� 1HFURWL]LQJ� (QWHURFROLWLV� �� š� 0HFNHO� 'LYHUWLFXOXP� �� š� ,QIODPPDWRU\�%RZHO� 'LVHDVH� �� š� 3HSWLF�8OFHU� ��

Disorders of Motility 682 Gastroenteritis (Acute 'LDUUKHD�� š� &RQVWLSDWLRQ� �� š� Encopresis 687

Intestinal Parasitic Disorders 687 Disorders of Malabsorption 687

Short Bowel Syndrome 687 Hepatic Disorders 689

+\SHUELOLUXELQHPLD�RI�WKH�1HZERUQ� �� š� %LOLDU\� $WUHVLD� �� š� 9LUDO�+HSDWLWLV� �� š� &LUUKRVLV� ��

Injuries to the Gastrointestinal System 695 Abdominal Trauma 695

26 Alterations in Genitourinary Function 701

Urinary Tract Infection 701 (WLRORJ\�DQG�3DWKRSK\VLRORJ\� �� š� &OLQLFDO� 0DQLIHVWDWLRQV� �� š� &OLQLFDO�7KHUDS\� ��

Structural Defects of the Urinary System 706 %ODGGHU�([VWURSK\� �� š� +\SRVSDGLDV� DQG�(SLVSDGLDV� �� š� 2EVWUXFWLYH� 8URSDWK\� �� š� 9HVLFRXUHWHUDO�5HIOX[� �� š� Prune Belly Syndrome 710

Enuresis 711 Renal Disorders 712

1HSKURWLF�6\QGURPH� �� š� $FXWH�3RVWLQIHFWLRXV� Glomerulonephritis 715

Renal Failure 718 $FXWH�5HQDO�)DLOXUH� �� š� &KURQLF� 5HQDO�)DLOXUH� �� š� 5HQDO�5HSODFHPHQW�

7KHUDS\� �� š� +HPRO\WLF�8UHPLF� 6\QGURPH� �� š� 3RO\F\VWLF�.LGQH\�'LVHDVH� ��

Structural Defects of the Reproductive System 731 3KLPRVLV� �� š� &U\SWRUFKLGLVP� �� š� ,QJXLQDO� +HUQLD�DQG�+\GURFHOH� �� š� 7HVWLFXODU� Torsion 732

Sexually Transmitted Infections 732 Pelvic Inflammatory Disease (PID) 735

27 Alterations in Neurologic Function 739 Altered States of Consciousness 739

(WLRORJ\�DQG�3DWKRSK\VLRORJ\� �� š� &OLQLFDO� 0DQLIHVWDWLRQV� �� š� &OLQLFDO�7KHUDS\� ��

Seizure Disorders 747 (WLRORJ\�DQG�3DWKRSK\VLRORJ\� �� š� &OLQLFDO� 0DQLIHVWDWLRQV� �� š� &OLQLFDO�7KHUDS\� ��

Infectious Diseases 754 %DFWHULDO�0HQLQJLWLV� �� š� 9LUDO��$VHSWLF�� 0HQLQJLWLV� �� š� (QFHSKDOLWLV� �� š� 5H\H� 6\QGURPH� �� š� *XLOODLQ�%DUUÜ�6\QGURPH� (Postinfectious Polyneuritis) 760

Headaches 761 (WLRORJ\�DQG�3DWKRSK\VLRORJ\� �� š� &OLQLFDO� 0DQLIHVWDWLRQV� �� š� &OLQLFDO�7KHUDS\� ��

Structural Defects 761 0LFURFHSKDO\� �� š� +\GURFHSKDOXV� �� š� 1HXUDO�7XEH�'HIHFWV� �� š� &UDQLRV\QRVWRVLV� �� š� 3RVLWLRQDO�3ODJLRFHSKDO\� �� š� 1HRQDWDO�$EVWLQHQFH� 6\QGURPH� �� š� 1HXURILEURPDWRVLV� ��

Cerebral Palsy 772 (WLRORJ\�DQG�3DWKRSK\VLRORJ\� �� š� &OLQLFDO� 0DQLIHVWDWLRQV� �� š� &OLQLFDO�7KHUDS\� ��

Injuries of the Neurologic System 777 7UDXPDWLF�%UDLQ�,QMXU\� �� š� &RQFXVVLRQ� �� š� 6FDOS�,QMXULHV� �� š� 6NXOO�)UDFWXUHV� �� š� 3HQHWUDWLQJ�,QMXULHV� �� š� 6SLQDO�&RUG�,QMXU\� �� š� Hypoxic-Ischemic Brain Injury (Drowning) 785

28 Alterations in Mental Health and Cognitive Function 790

Mental Health Alterations of Children and Adolescents 790 (WLRORJ\�DQG�3DWKRSK\VLRORJ\� �� š� &OLQLFDO� 0DQLIHVWDWLRQV� �� š� &OLQLFDO�7KHUDS\� ��

Developmental and Behavioral Disorders 796 Autism Spectrum Disorder (Neurodevelopmental 'LVRUGHU�� š� $WWHQWLRQ�'HILFLW�'LVRUGHU�DQG� Attention Deficit Hyperactivity Disorder 800

Mood Disorders 803 'HSUHVVLRQ� �� š� %LSRODU�'LVRUGHU��0DQLF� Depression) 806

Anxiety and Related Disorders 807 *HQHUDOL]HG�$Q[LHW\�'LVRUGHU� �� š� 6HSDUDWLRQ� $Q[LHW\�'LVRUGHU� �� š� 3DQLF�'LVRUGHU� �� š� 2EVHVVLYH�&RPSXOVLYH�'LVRUGHU� �� š�

xxiv Contents

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6FKRRO�3KRELD��6RFLDO�3KRELD�� š� &RQYHUVLRQ� 5HDFWLRQ� �� š� 3RVWWUDXPDWLF�6WUHVV�'LVRUGHU� ��

Other Disorders 811 6XLFLGH� �� š� 7LF�'LVRUGHUV�DQG�7RXUHWWH� 6\QGURPH� �� š� 6FKL]RSKUHQLD� ��

Cognitive Alterations 813 /HDUQLQJ�'LVDELOLWLHV� �� š� ,QWHOOHFWXDO�'LVDELOLW\� (Formerly Called Mental Retardation) 814

29 Alterations in Musculoskeletal Function 821

Disorders of the Feet and Legs 826 0HWDWDUVXV�$GGXFWXV� �� š� &OXEIRRW� �� š� *HQX� Varum and Genu Valgum 830

Disorders of the Hip 831 'HYHORSPHQWDO�'\VSODVLD�RI�WKH�+LS� �� š� /HJJ�&DOYÜ�3HUWKHV�'LVHDVH� �� š� 6OLSSHG�&DSLWDO� Femoral Epiphysis 835

Disorders of the Spine 837 6FROLRVLV� �� š� 7RUWLFROOLV��.\SKRVLV�� and Lordosis 841

Additional Disorders of the Bones and Joints 841 2VWHRSRURVLV�DQG�2VWHRSHQLD� �� š� 2VWHRP\HOLWLV� �� š� 6NHOHWDO�7XEHUFXORVLV�DQG�6HSWLF� $UWKULWLV� �� š� $FKRQGURSODVLD� �� š� 0DUIDQ� 6\QGURPH� �� š� 2VWHRJHQHVLV�,PSHUIHFWD� ��

Muscular Dystrophies 847 Injuries to the Musculoskeletal System 851

)UDFWXUHV� �� š� 6SRUWV� ,QMXULHV� �� š� $PSXWDWLRQV� ��

30 Alterations in Endocrine Function 861 Disorders of Pituitary Function 861

Growth Hormone Deficiency �+\SRSLWXLWDULVP�� š� *URZWK�+RUPRQH� ([FHVV��+\SHUSLWXLWDULVP�� š� 'LDEHWHV� ,QVLSLGXV� �� š� 6\QGURPH�RI�,QDSSURSULDWH� $QWLGLXUHWLF�+RUPRQH��6,$'+�� š� 3UHFRFLRXV� Puberty 868

Disorders of Thyroid Function 869 +\SRWK\URLGLVP� �� š� +\SHUWK\URLGLVP� ��

Disorders of the Parathyroid 872 +\SHUSDUDWK\URLGLVP� �� š� +\SRSDUDWK\URLGLVP� ��

Disorders of Adrenal Function 872 Cushing Syndrome and Cushing 'LVHDVH� �� š� &RQJHQLWDO�$GUHQDO� +\SHUSODVLD� �� š� $GUHQDO�,QVXIILFLHQF\��$GGLVRQ� 'LVHDVH�� š� 3KHRFKURPRF\WRPD� ��

Disorders of Pancreatic Function 876 'LDEHWHV�0HOOLWXV� �� š� 7\SH��'LDEHWHV� �� š� 'LDEHWLF�.HWRDFLGRVLV� �� š� +\SRJO\FHPLD�LQ�WKH� &KLOG�:LWK�'LDEHWHV� �� š� 7\SH��'LDEHWHV� ��

Disorders of Gonadal Function 891

*\QHFRPDVWLD� �� š� $PHQRUUKHD� �� š� Dysmenorrhea 892

Disorders Related to Sex Chromosome Abnormalities 892 7XUQHU�6\QGURPH� �� š� .OLQHIHOWHU�6\QGURPH� ��

Inborn Errors of Metabolism 893 3KHQ\ONHWRQXULD� �� š� *DODFWRVHPLD� �� š� 0LWRFKRQGULDO�'LVHDVHV� �� š� 0DSOH�6\UXS�8ULQH� Disease 895

31 Alterations in Skin Integrity 900 Skin Lesions 900 Wound Healing 903 Dermatitis 903

&RQWDFW�'HUPDWLWLV� �� š� 'LDSHU� 'HUPDWLWLV� �� š� 6HERUUKHLF�'HUPDWLWLV� ��

Bacterial Infections 908 ,PSHWLJR� �� š� &RPPXQLW\�$FTXLUHG� Methicillin-Resistant Staphylococcus aureus� �� š� )ROOLFXOLWLV� �� š� &HOOXOLWLV� ��

Viral Infections 910 0ROOXVFXP�&RQWDJLRVXP� �� š� :DUWV� (Papillomavirus) 910

Fungal Infections 910 2UDO�&DQGLGDO�,QIHFWLRQ��7KUXVK�� š� Dermatophytoses (Ringworm) 911

Drug Reactions 911 Chronic Skin Conditions 913

$WRSLF�'HUPDWLWLV� �� š� $FQH� �� š� 3VRULDVLV� �� š� (SLGHUPRO\VLV�%XOORVD� ��

Infestations 921 3HGLFXORVLV�&DSLWLV��/LFH�� š� 6FDELHV� ��

Vascular Tumors (Hemangiomas) 923

Injuries to the Skin 924 3UHVVXUH�8OFHUV� �� š� %XUQV� �� š� 6XQEXUQ� �� š� +\SRWKHUPLD� �� š� )URVWELWH� �� š� %LWHV� �� š� &RQWXVLRQV� �� š� )RUHLJQ�%RGLHV� �� š� /DFHUDWLRQV� ��

Appendix A Physical Growth Charts 942 Appendix B Blood Pressure Tables 952 Appendix C Dietary Reference Intakes 954 Appendix D Selected Pediatric

Laboratory Values 956

Appendix E Diagnostic Tests and Procedures 959

Appendix F Body Surface Area Nomogram 964 Appendix G Conversions and Equivalents 965 Glossary 966

Index 979

Contents xxv

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$��B*25'��B��B6(B)0�LQGG�� SP

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Chapter 1

Nurse’s Role in Care of the Child: Hospital, Community, and Home

Learning Outcomes

1.1 Describe the continuum of pediatric health care.

1.2 Compare the roles of nurses in child health care.

1.3 Analyze the current societal influences on pediatric health care and nursing practice.

1.4 Report the most common causes of child mortality by age group and reasons for hospitalization.

1.5 Contrast the policies for obtaining informed consent of minors to policies for adults.

1.6 Examine three unique pediatric legal and ethical issues in pediatric nursing practice.

Manny takes medication for seizures, and he is in the health clinic because he had a seizure last week. I will help the parents learn more about seizures, how they are treated, and what they should do when Manny has a seizure. —Nurse caring for Manny, 3 years old

Pediatric Healthcare Overview Nurses provide care to healthy children as well as to those with illnesses, injuries, and chronic conditions such as seizures, in a wide variety of settings. They contribute to the health and wel- fare of children as they monitor their growth and development, and help them adapt to and manage their health conditions. Fortunately, most children are healthy, experiencing only occa- sional short-term health problems, and nurses have the opportu- nity to help children and families prevent disease and promote a healthy lifestyle. However, children with special healthcare needs require frequent contact with the healthcare system to achieve and maintain their optimal level of health.

Pediatric health care occurs along a continuum that reflects not only the various settings of care but also the complexity and range of care needed by individual children and their families. For example, all children need health promotion and health maintenance services, but some children will need care for

chronic conditions, acute illnesses and injuries, and even end- of-life care. See Figure 1–1 for the model of pediatric health care on which this text is based.

The range of healthcare settings in which pediatric nurses work includes the following:

š� The hospital, including pediatric wards, intensive care units, newborn nursery, emergency department, radiology, and specialty clinics

š� Physician offices, clinics, and healthcare centers š� The child’s home š� Rehabilitation centers and residential treatment centers š� Schools, childcare centers, and camps š� The community

Without a doubt, nurses play a significant role in the provi- sion of health care for children. Their responsibilities vary in the

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2 Chapter 1

Role of the Nurse in Pediatrics Pediatric nursing, using a family-centered care approach, focuses on promoting the health of children of newborn age through young adulthood; protecting them from illness and injury; rec- ognizing the differences in presentation of diseases between children and adults; adapting nursing care to the age, develop- ment, social factors, and health status of the child; assisting and educating the family to care for their child’s health condition needs; and advocating for the care of children and their families in all healthcare settings and the community. The nursing roles in caring for children and their families include direct care, cli- ent education, advocacy, and case management. Pediatric nurses collaborate with other healthcare professionals as a team member while performing each of these nursing roles.

Nurses who specialize in pediatrics apply foundational knowledge learned during their nursing education, such as the nursing process, anatomy and physiology, physical assessment, healthcare condition recognition and management, and the full range of nursing skills. Pediatric nurses then add additional com- petencies related to the care of children and their families, such as the following:

š� Interacting effectively with children of different ages and their families

š� Modifying physical assessment techniques for the age and development of the child

š� Identifying strategies to reduce the child’s pain and stress š� Accurately calculating medication dosages and volume for

administration š� Considering the child’s developmental status for client

safety and injury prevention activities š� Adapting nursing procedures to the developmental age of

the child

Several nursing organizations have collaborated to develop standards of practice for pediatric nurses.

Figure 1–1 The Bindler-Ball Continuum of Pediatric Health Care for Children and Their Families. The outer bars represent the family, cultural, and community influence on the care that the child receives, either through the services sought by the family or the services provided in the community. Cultural influences include the family’s values and beliefs, and the cultural competence of the nurse in caring for a child and family.

The inner categories represent the range of health care needed by children. All children need health promotion and health maintenance services, represented by the base of the triangle. Notice the arrows representing the upward and downward movement between the levels of care as the child’s condition changes.

Children may be healthy with episodic acute illnesses and injuries. Some children develop a chronic condition for which specialized health care is needed. A child’s chronic condition may be well controlled, but acute episodes (such as with asthma) or other illnesses and injuries may occur, thus prompting additional health promotion and health maintenance services. Some children develop a life-threatening illness and ultimately need end-of-life care. A healthy child may also experience a catastrophic injury leading to death, thereby requiring supportive end-of-life care for the family.

SOURCE: Bindler, R. C., & Ball, J. W. (2007). The Binder-Ball healthcare model: A new paradigm for health promotion. Pediatric Nursing, 22(2).

End- of-

Life Care

C om

m un

ity Culture

Acute Conditions

Chronic Conditions

Health Maintenance Disease Prevention–Injury Prevention

Health Promotion Family

Professionalism in Practice Standards for Pediatric Nursing Practice The American Nurses Association, the National Associa- tion of Pediatric Nurse Practitioners, and the Society of Pediatric Nurses jointly developed Pediatric Nursing: Scope and Standards of Practice (2015). These standards describe the expectations for professional performance during care to children and their families. Practicing nurses have an obligation to maintain competence, update their knowl- edge of new research and practice changes, and practice in an ethical manner when assessing, planning, and evalu- ating the care provided to children and their families. Collaboration with the family and other healthcare profes- sionals as well as advocating for the child and family are additional expectations when providing nursing care.

different clinical settings as they collaborate with other health- care providers, such as physicians, social workers, pharmacists, optometrists, psychologists, dentists, nutritionists, speech thera- pists, and physical and occupational therapists.

Assessment, nursing care interventions, and client education are universal roles for nurses regardless of the setting in which they work. This chapter defines the various roles for the nurs- ing care of children and reviews concepts important to pediatric nursing.

Direct Nursing Care The nursing process provides the framework for delivery of direct pediatric nursing care. The nurse assesses the child, identifies the health concerns, and lists the nursing diagnoses describing the responses of the child and family to those health concerns in the nursing care plan. The nurse then implements

0��B%$//��B��B6(B&��LQGG�� SP

Nurse’s Role in Care of the Child: Hospital, Community, and Home 3

and resources available to help the child and family learn about the current health condition. See Developing Cultural Competence: Adapting the Reading Level of Patient Education Materials. Educa- tion can be evaluated during future visits of children receiving ongoing health promotion and health maintenance care and of those with a chronic condition that requires home management.

and evaluates nursing care. This care is designed to meet the physical and emotional needs of the child and family. It is tai- lored to the child’s developmental stage, giving the child addi- tional responsibility for self-care with increasing age. Planned care is offered in a sensitive manner, compatible with the cultural beliefs of the child and family in collaboration with the family, using family-centered care principles (see Chapter 2).

Nurses play an important role in minimizing the psycho- logic and physical distress experienced by children and their families. Providing support to children as well as their families is one component of direct nursing care. This often involves listen- ing to their concerns, being present during stressful or emotional experiences, and implementing strategies to help children and family members cope (see Chapter 2). Nurses can also help fami- lies by suggesting ways to support their children in all healthcare settings, including the home.

Patient Education The education of children and their families improves treatment results. In pediatric nursing, patient education may be chal- lenging, because nurses work with children at various levels of understanding. Rather than giving simple facts, the goal of client education is to help the child and parents or guardians make informed choices about health and healthy behaviors.

As patient educators, nurses help children adapt to the hos- pital setting and prepare them for procedures (Figure 1–2). Most hospitals encourage a parent to stay with the child and to provide much of the direct and supportive care. Nurses teach parents to watch for important signs and responses to therapies, to increase the child’s comfort, and even to provide advanced care. Taking an active role prepares the parent to assume total responsibility for care after the child leaves the hospital.

Planning and preparation, as well as an understanding of the child’s developmental level, are needed to effectively edu- cate children and parents. An assessment of the knowledge the child and family have about health conditions or health practices, their past experiences, and their attitudes and beliefs is a starting point for education. The nurse needs to think about strategies

Figure 1–2 Explaining procedures can reduce this adolescent’s and family’s fears and anxieties about what to expect as well as teach procedures and proper home care.

Developing Cultural Competence Adapting the Reading Level of Patient Education Materials Understanding written information in patient care instruc- tions, education materials, and even prescription labels is important to promote adherence (the extent to which a client or parent follows recommended care for the health problem). Among U.S. adults, 20% read at a fifth-grade level or below; however, this rate varies by cultural group with higher rates of poor literacy among Latinos, Blacks, and Asians (Pontius, 2013). This means that many parents have difficulty using and understanding health informa- tion. Healthcare materials must be provided in the appro- priate language and at the appropriate reading level (e.g., sixth-grade reading level for low literacy individuals) (Pontius, 2014). Printed materials to educate children and families about a health condition might be readily avail- able, but they may be written at a reading level that is too high. Even though printed material may be available in the primary language of the client and family, do not assume that the family has reading skills in that language.

When developing patient education materials with a lower reading level:

š� Use short familiar words with one or two syllables in short sentences.

š� Substitute simple language that defines a medical term rather than using the term.

š� Use pictures or graphics to give instructions when possible.

š� Use active voice rather than passive voice.

š� Use the term must to express a requirement.

š� Divide the content into small sections and use headers.

š� Use lists and tables to simplify content.

š� Use a computer program to evaluate the reading level of the materials you develop.

Patient Advocacy Advocacy—acting to safeguard and advance the interests of another—is directed at enabling the child and family to adjust to the changes in the child’s health in their own way. To be an effec- tive advocate, the nurse must be aware of the needs of the child and family, the family’s resources, and the healthcare services available in the community. The nurse can then assist the family and the child to make informed choices about these services and to act in the child’s best interests.

As advocates, nurses often serve on committees to ensure that the policies and resources of healthcare agencies meet the psychosocial needs of children and their families. The nurse must also protect the child and family by taking appropriate actions related to any incidents of incompetent, unethical, or illegal practices by any member of the healthcare team.

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4 Chapter 1

thinking or reasoning process that nurses use to solve problems. Both of these reasoning skills are essential for nurses. For exam- ple, the child’s condition can change during a hospitalization, requiring nurses to recognize subtle cues that need attention to prevent the child’s deterioration.

The nursing process involves clinical reasoning and critical thinking when planning nursing care for infants, children, and adolescents. Consider how the five steps of the nursing process relate to children:

š� Assessment involves collecting client and family data and performing physical examinations in all healthcare settings. The nurse analyzes and synthesizes data to make a judg- ment about the child’s problems.

š� Nursing diagnoses describe the health promotion and health patterns that nurses can identify and manage by develop- ing a plan for specific nursing actions. The North American Nursing Diagnosis Association (NANDA) has established the standard language for these nursing diagnoses. Each nursing diagnosis has defining characteristics, related fac- tors or risk factors, nursing intervention classifications (NIC), and nursing outcome classifications (NOC).

š� Nursing care plans are based on the identification of desired outcomes or goals that will improve the child’s or family’s healthy or dysfunctional health patterns. The nurse creates a nursing care plan in collaboration with the child and family or customizes standard care plans for specific diagnoses that may be used in all healthcare settings. Standard care plans are customized based on data collected from the child’s assessment and an evaluation of the child’s response to care. The family (and the child, when old enough) and the nurse should agree with the care plan goals.

š� Implementation is performing the interventions or specific action steps outlined in the nursing care plan.

š� Evaluation is the use of specific objective and subjective mea- sures (often called outcome measures or outcome criteria) to measure the progress of the child and family in reaching the goals defined in the nursing care plan. As the child’s condi- tion improves and goals are attained, the nursing care plan is modified with new goals and nursing actions based on data from ongoing assessments.

Evidence-Based Practice Evidence-based practice (EBP) is a problem-solving approach that integrates the best research evidence with a healthcare pro- fessional’s clinical expertise and the client’s values or preferences (Ritt, 2013). It provides a bridge between research and practice by using a systematic search for the most relevant evidence related to a clinical question or problem, followed by a critical review of that evidence to help answer it. Evidence-based practice is one strategy to keep nursing practice current and to promote posi- tive outcomes for children and their families. It has become an important strategy used by healthcare institutions to improve client safety and quality of care. Use of EBP requires the nurse to be a lifelong learner.

Several steps are involved in the EBP (Lockwood, Aroma- taris, & Munn, 2014):

1. Ask and clearly describe the specific clinical question. 2. Collect the most relevant and best evidence from well-

designed studies. 3. Critically review, synthesize, and analyze the evidence for

quality and application to the clinical question and popula- tion served.

Case Management What happens when a child has significant health problems? Can one nurse handle it all? When a child has a significant chronic health condition, healthcare professionals (physicians, nurses, social workers, physical and occupational therapists, and other specialists) often create an interdisciplinary plan to meet the child’s medical, nursing, developmental, educational, and psy- chosocial needs. Because nurses spend time with the child and family while providing nursing care, they often know about the family’s wishes and resources. As a member of the interpro- fessional team, the nurse can serve as the family’s advocate to ensure that the care plan considers the family’s wishes and con- tains appropriate services. A nurse may become the child’s case manager, coordinating the implementation of the interdisciplin- ary care plan. Sometimes the parent or a social worker becomes the case manager.

Case management is a process that involves the assessment, planning, facilitation, and delivery of healthcare services, includ- ing healthcare options by the interprofessional team to promote quality and cost effectiveness of care (Woodward & Rice, 2015). This practice promotes continuity of care, the process of facilitat- ing a client’s care between and among healthcare providers and settings based on health needs and available resources. The nurse case manager has control over the use of healthcare resources that are considered appropriate for the child’s condition and links the child and family to these services. Case management may be used for care of the patient when hospitalized and for long-term care of chronic conditions.

Discharge planning is a form of case management. Good discharge planning promotes a smooth, rapid, and safe transi- tion into the community and improves the results of treatment begun in the hospital. To be a discharge planner, the nurse needs to know about community medical resources, home care agen- cies qualified to care for children, educational interventions, and services reimbursed by the child’s health plan or other financial resources.

Research Clinical research helps develop, refine, and expand knowledge that advances the science of pediatric nursing care and improves the nursing care provided to children (Christian, 2012). Research can focus on evaluating innovations in care to determine if prac- tice is improved. Pediatric nurses read and analyze new research findings and apply those findings to practice. Such findings may potentially advance healthcare outcomes, improve comfort, or even reduce the cost of care. This research may also be used in developing specific healthcare facility evidence-based clinical practice guidelines. For example, pediatric nurses may identify issues in client care processes that involve clinical practice, edu- cation, ethical issues, and specific needs of particular populations of children.

Nursing Process in Pediatric Care Clinical Reasoning Clinical reasoning is the analytical process used when assess- ing client cues and information, synthesizing that information and applying it to understand a child’s or family’s problem or concern, and then using the nursing process to plan and evaluate the child’s care. Critical thinking is an individualized, creative

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Nurse’s Role in Care of the Child: Hospital, Community, and Home 5

Pediatric nurses also work in several community healthcare settings such as physician offices, health centers, specialty care clinics, home health agencies, and schools. See Chapter 10 for more information about nursing care in community settings.

Contemporary Climate for Pediatric Nursing Care In 2014, more than 73.6 million children under the age of 18 years lived in the United States. They accounted for 23.1% of the population (U.S. Census Bureau, Population Division, 2015). (See Figure 1–3 for a distribution of the population by age group.) The racial and ethnic diversity of children under 18 years of age in the United States continues to increase and is currently estimated as follows (Federal Interagency Forum on Child and Family Sta- tistics, 2014):

š� White, non-Hispanic: 52.4% š� Black, non-Hispanic: 13.8% š� Hispanic: 24.1% š� Asian: 4.6% š� All other races: 5.1%

Culturally Sensitive Care The U.S. population has a varied mix of cultural groups, with ever-increasing diversity. In 2012, approximately 47.6% of all children under age 18 years were from families of minority populations. By the year 2050, it is expected that the propor- tion of children who are of Hispanic origin will increase to 36%, equaling the proportion of non-Hispanic White children (Federal Interagency Forum on Child and Family Statistics, 2013). Diversity also exists among the non-Hispanic White population, representing many cultural groups who have immigrated from European and former Soviet bloc countries. See Chapter 2 for more information on cultures.

4. Integrate the evidence with your clinical experience and the client’s preferences and values, often providing the develop- ment of a practice guideline for nursing practice.

5. Evaluate the nursing practice change resulting from the EBP process for its impact on quality of care.

Nurses often collaborate with an interprofessional team to investigate EBP clinical questions to develop a clinical practice guideline, a consensus of evidence-based and expert opinion statements about the care for a specific diagnosis used to assist the interprofessional team of healthcare providers to make deci- sions about the appropriate care of a child who has that condi- tion (Keiffer, 2015). Some practice guidelines are developed by government agencies and national professional organizations. These guidelines encourage practice changes that improve qual- ity and encourage more cost-effective care. Practice guidelines are tools that promote uniformity in care so that client outcomes and healthcare professional performance can be measured. One example is the pediatric asthma guidelines developed by the National Asthma Education Program.

Practice guidelines help promote collaborative practice, a comprehensive model of health care that uses an interprofes- sional team of health professionals to provide high-quality, cost- effective care. Other examples of practice guidelines include the care of a child with type 1 diabetes and traumatic brain injury.

Settings for Pediatric Nursing Care Pediatric nurses function in a variety of settings within the hos- pital. Acute care may be provided in the emergency department, observation or short-stay unit, postanesthesia unit, intensive care unit, general pediatric inpatient unit, and various outpatient clinics. In rehabilitation centers, nurses provide inpatient and ambulatory care to help restore children to an optimal state and plan for discharge management of chronic conditions. Pediatric nurses working with children and families on a general pediat- ric hospital unit promote health improvement in the following ways:

š� Gathering data and assessing the health of children and their families

š� Providing ordered medical therapies š� Delivering nursing care in a manner that preserves as many

of the child’s and family’s normal routines as possible while maintaining the family unit

š� Working with the family and healthcare team to develop an individualized healthcare plan and a discharge plan, or to implement a clinical practice guideline

The hospital stay is part of a care continuum that allows children to complete therapy at home, at school, or in other com- munity settings. Pediatric nurses assist families in transitioning from the acute hospital setting to the home or other facility, such as a rehabilitation center or long-term care facility. Managing the child’s transition from acute care to another setting involves discharge planning that integrates interdisciplinary care plans and collaboration with a broad range of healthcare profession- als. The nurse may assist the family of a child with significant health problems to prepare for the child’s return home and to develop an emergency care plan in case the child has an unex- pected healthcare crisis. See Chapter 11 for more information on caring for children in the hospital setting.

Figure 1–3 The population of children under age 18 years was estimated in 2014 to account for 23.1% of the population in the United States. Note the comparison of the pediatric population size with other population age groups. SOURCE: Data from U.S. Census Bureau, Population Division. (2015). Annual estimates of the resident population for selected age groups by sex for the United States, states, counties, and Puerto Rico Commonwealth and municipios: April 1, 2010, to July 1, 2014. Retrieved from http://factfinder.census.gov

< 5 years

5 to 13 years

14 to 17 years

18 to 64 years

65+ years

6.23%

5.25%

11.60%

14.50%

62.40%

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6 Chapter 1

Pediatric Health Statistics

Mortality Children have different healthcare problems than adults, and the problems may be related to stage of development or other factors. The infant mortality (death in infants under 12 months of age) rate was 5.96 deaths per 1000 live births in the United States in 2013 (Kochanek, Murphy, Xu, et al., 2014). See Table 1–1 for the leading causes of infant mortality in 2013. The mortality rate for non-Hispanic Black infants is more than twice the rate of non-Hispanic Whites (U.S. Depart- ment of Health and Human Services, 2013). The leading causes of infant mortality vary according to the age of the infant. For example, the leading causes of death in the neonatal period (birth to 28 days of age) are short gestation, low birth weight, and congenital malformations. The leading causes of mortality in the postneonatal period (between 1 and 12 months of age) are sudden infant death syndrome, congenital malformations, and unintentional injuries (U.S. Department of Health and Human Services, 2013).

The most common cause of death for children between 1 and 19 years of age is unintentional injury. Congenital malformations, cancer, and diseases of the heart are among the most common medical causes of death in children and adolescents. Figure 1–5

Family-Centered Care Recognizing the family as the constant influence and support in a child’s life is the foundation for developing a trusting rela- tionship with families. The family is the principal caregiver and support for the child, and the family is important in helping the child recover from an illness or injury (Figure 1–4). The effort to address and meet the emotional, social, and developmental needs of children and families seeking health care in all settings is a concept known as family-centered care. Families are often considered partners in care, learning about children’s conditions and participating in decisions regarding their care. Thus, families gain greater confidence and competence in caring for their chil- dren who have healthcare problems.The key elements of family- centered care are described in Chapter 2.

Figure 1–4 Many facilities now encourage family visitation for children with health problems that require long-term hospitalization. Extended family visits enable parents to learn about the child’s care, and provide siblings with opportunities to interact with the hospitalized child.

Figure 1–5 Age-specific death rates per 100,000 children for the leading causes of mortality in the United States in 2013. A, Leading causes of death and death rates for children between 1 and 9 years of age. B, Leading causes of death and death rates for children between 10 and 19 years of age. The leading cause of death in children in all age groups was unintentional injury. Why do you think that is? Which type of unintentional injury has the highest rate of death? Drowning? Fires and burns? Motor vehicle crashes? What about intentional injury? See Table 1–2 for the answers. SOURCE: Data from Centers for Disease Control and Prevention, National Center for Health Statistics. (2015a). Health data interactive. Retrieved from www.cdc. gov/nchs/hdi.htm

Unintentional injury Unintentional injury

Malignant neoplasms

Suicide

Congenital malformations

Homicide

Heart disease

Chronic low respiratory disease

Influenza and pneumonia

Congenital malformations

Homicide

Malignant neoplasms

Heart disease

Influenza and pneumonia

Chronic low respiratory disease

1 to 4 years 5 to 9 years

0 0 5 10 15 202 4 6 8 10

10 to 14 years 15 to 19 years

CAUSE OF INFANT MORTALITY

RATE PER 1000 LIVE BIRTH S

Congenital malformations 121.0

Low birth weight 106.9

Maternal complications 40.6

Sudden infant death syndrome 39.7

Unintentional injuries 29.6

Source: Adapted from Kochanek, K. D., Murphy, S. L., Xu, J., & Arias, E. (2014). Mortality in the United States, 2013. NCHS Data Brief, No. 178. Retrieved from http://www.cdc.gov/nchs/data/ databriefs/db178.pdf

TABLE 1–1 Five Leading Causes of Infant Mortality, 2013

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Nurse’s Role in Care of the Child: Hospital, Community, and Home 7

š� Vision (V) š� Substance abuse (SA) š� Tobacco use (TU) š� Environmental health (EH) š� Physical activity (PA) š� Immunization and infectious diseases (IID) š� Respiratory diseases (RD) š� Disability and health (DH)

Injury accounted for an alarming percentage of deaths to children and youth in 2013: children 1 to 4 years—40.7%, chil- dren 5 to 9 years—35.9%, youth 10 to 14 years—45.1%, and adolescents 15 to 19 years—71.7% (Centers for Disease Control and Prevention, National Center for Health Statistics, 2015b). Although unintentional injury is the leading cause of death for children and youth, intentional injury (homicide and suicide) is among the top five major causes of death for our nation’s children. The major causes of unintentional injury mortality in childhood include motor vehicle (passengers and pedestri- ans), drowning, fires and burns, suffocation, and poisoning. Table 1–2 illustrates the leading causes of injury deaths by age group. Many injury prevention programs have been imple- mented by state health departments, healthcare facilities, and national organizations to reduce the number of children who die unnecessarily.

The U.S. government set objectives to improve the health of children and young adults in the 21st century in the report titled Healthy People 2020. These national health objectives focus on reducing the incidence of death and disability from the major causes of death shown in Figure 1–5 and Tables 1–1 and 1–2. Healthy People 2020’s overarching goals are listed in Box 1–1. Often federal funding in grants is linked to the development of programs aimed at reducing the number of deaths from these factors in specific high-risk groups. Throughout this text, Healthy People 2020 objectives related to health promotion and specific conditions are identified in specially designed “speed bumps.” The coding in front of each objective identifies the specific topic area and objective number for the Healthy People 2020 initiative. Pediatric nurses focus directly on many of these topic areas, including the following:

š� Maternal, infant, and child health (MICH) š� Adolescent health (AH) š� Injury and violence prevention (IVP) š� Nutrition and weight status (NWS) š� Educational and community-based programs (ECBP)

Healthy People 2020 (MICH-3) Reduce the rate of child deaths

Box 1–1 Healthy People 2020 Overarching Goals Goal 1: Attain high-quality, longer lives free of disease, disability, injury, and premature death. Goal 2: Achieve health equity, eliminate disparities, and improve the health of all groups. Goal 3: Create social and physical environments that pro- mote good health for all. Goal 4: Promote quality of life, healthy development, and healthy behaviors across all life stages. SOURCE: U.S. Department of Health and Human Services. (2015). Healthy People 2020. Retrieved from http://www.healthypeople.gov/2020/about/ default.aspx

RANKING

AGE GROUP FIRST SECOND TH IRD FOURTH FIFTH

Under 1 year Suffocation Homicide, unspecified cause

Homicide, specified cause

Motor vehicle Undetermined suffocation

1 to 4 years Drowning Motor vehicle Suffocation Homicide Fire, burns

5 to 9 years Motor vehicle Drowning Fire, burns Homicide, firearms Suffocation

10 to 14 years Motor vehicle Suicide, suffocation Suicide, firearms Homicide, firearms Drowning

15 to 19 years Motor vehicle Homicide, firearms Suicide, suffocation Suicide, firearms Poisoning

Source: Data from National Center for Health Statistics. (2015). 10 leading causes of injury deaths, United States 2013. Retrieved from http://www.cdc.gov/injury/wisqars/fatal.html

TABLE 1–2 Five Leading Causes of Injury Death by Age Group, 2013*

Morbidity Morbidity is an illness or injury that limits activity, requires med- ical attention or hospitalization, or results in a chronic condition. Morbidity varies according to the age of the child. In 2011, chil- dren under 18 years of age accounted for more than 5.6 million hospitalizations, and the number of hospitalizations in this age group had decreased 26% since 1997. Infants less than 1 year of age accounted for 4.2 million of these hospitalizations. Most of these hospitalizations were related to live birth, but other lead- ing causes of hospitalization included acute bronchitis, hemo- lytic jaundice, pneumonia, and short gestation/low birth weight (Pfuntner, Wier, & Stocks, 2013). Figure 1–6 illustrates the five leading causes of hospitalization of children 1 through 17 years of age in 2011. Diseases of the respiratory system account for the greatest number of hospitalizations when pneumonia and asthma hospitalizations are combined. Hospitalizations for mood disorders have increased 68% since 1997. What do you think could account for the increase in hospitalizations for mood disorders? See Chapter 17.

shows the age-specific mortality rates for the leading causes of death by age group.

*Darker shading indicates unintentional injuries.

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8 Chapter 1

requirements similar to the essential services required by Med- icaid and SCHIP, especially if the SCHIP program is not reau- thorized. Services for children with special healthcare needs and rehabilitation included in large-group private health plans may potentially be threatened if these health payers modify benefits to fit the ACA requirements (Fry-Bowers, 2015).

Despite the availability of SCHIP, many eligible children are not enrolled. The expectation is that when parents contact their state Affordable Care Act Health Insurance Marketplace, quali- fications for Medicaid or SCHIP will be identified and parents will be directed to enroll their children in those programs. Nurses can play an important role in encouraging families to investi- gate their eligibility for the program. Obtain current guidelines in your state about eligibility requirements and coverage benefits.

Healthcare Technology Research and technology have enabled many children with con- genital anomalies and low birth weights to survive, with and without chronic conditions. Technologic advances have led to the development of portable medical equipment for home care that children use to support physiologic functions. For example, approximately 9 million U.S. children have special healthcare needs requiring complex care or specialized equipment (e.g., ventilators, feeding tubes, intravenous or central lines and their associated pumps, cardiorespiratory monitors, peritoneal dialy- sis, and pacemakers) (Baker & Cormier, 2013). The number of children assisted by technology continues to increase as scientific and technologic advances grow. However, this technology also adds burdens to the family, such as stresses on family functioning, preparation for power outages, and higher costs for health care. Some families have regained control over their lives by creating intensive care units in their homes (Figure 1–8). See Chapter 12 for more information on children with special healthcare needs.

Healthcare Issues

Healthcare Financing Cost and access to health care are important policy issues. Congress created the Children’s Health Insurance Program (CHIP) in 1997 to serve uninsured children up to age 19 years. This program was reauthorized in 2009 to provide health insur- ance for children when their family’s income is too high to qualify for Medicaid but inadequate to pay for private insurance coverage. Medicaid and the State Children’s Health Insurance Program (SCHIP) provide health coverage to more than 31 mil- lion children, including half of all low-income children in the United States (Centers for Medicare and Medicaid Services, 2014a). See Figure 1–7 for the distribution of children’s health insurance status.

Figure 1–6 The five leading causes of hospitalization for children 1 to 17 years of age in the United States in 2011 are presented as a percentage of all causes of hospitalization in this age group. SOURCE: Data from Pfuntner, A., Wier, L. M., & Stocks, C. (2013). Most frequent conditions in U.S. hospitals, 2011. H-CUP Statistical Brief, No. 162. Retrieved from http://www.hcup-us.ahrq.gov/reports/statbriefs/sb162.pdf

Mood disorders

6.9%

6.6%

4.7%

70.3%

7.9%

3.5%

Pneumonia

Asthma

Appendicitis

Epilepsy

All other causes

Figure 1–7 In the United States, how is health care of children through age 18 years paid for? These data from 2014 show that U.S. taxes support 42.1% of the costs. What can you do to help? Something as simple as counseling parents about injury prevention and providing immunizations while a child is under care for other problems can prevent potential health problems. Part of good nursing care is supporting the well-being of the child in addition to caring for the presenting problem. SOURCE: Data from Martinez, M., & Cohen, R. A. (2015). Health insurance coverage: Early release of estimates from the National Health Interview Survey, January–September 2014. National Center for Health Statistics. Retrieved from http://www.cdc.gov/ nchs/data/nhis/earlyrelease/insur201503.pdf

53.3%

4.6%

Public insurance (Medicaid and SCHIP) Private health insurance Uninsured

42.1%

Clinical Tip The federal poverty rate is used to determine eligibility for many health and welfare services. The rate is a sliding scale based on the number of persons in the family, and it is updated annually. For example, in 2013, the Affordable Care Act specified that 133% of the federal poverty level ($31,321.50 for a family of four) be used as the eligibility criteria for Medicaid. Eligibility for CHIP begins at 200% of the federal poverty level, but some states set a higher level for eligibility (Centers for Medicare and Medicaid Services, 2014b).

The Patient Protection and Affordable Care Act (ACA) bridges a portion of the gap for children whose family income is too low for private health insurance but too high to qualify for Medicaid and SCHIP. It ends preexisting condition exclusions for children, eliminates annual limits on insurance coverage, and keeps young adults covered for a longer period on their parents’ health insurance policy (U.S. Department of Health and Human Services, 2015). Pediatric healthcare professionals continue to have concerns regarding the need to have pediatric service

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Nurse’s Role in Care of the Child: Hospital, Community, and Home 9

patient, and healthcare-associated infections (AAP, 2011b). Cor- rect client identification is essential prior to all procedures and medication administration. See Figure 1–9. Some aspects of pedi- atric care increase the risk for medical error, such as medication dosages that must be calculated for the child’s weight and liquid medications that require an additional calculation for volume per dose. The young child’s immature physiology may also affect the ability to metabolize and excrete certain medications.Legal Concepts and

Responsibilities

Regulation of Nursing Practice Nurses are accountable for their professional actions, and each state regulates nursing practice with a nurse practice act. A state’s nurse practice act defines the legal roles and responsibilities of nurses. As professionals, nurses set standards for education and practice that conform to state regulations. Standards for nursing education are modified as the science of nursing progresses.

Accountability and Risk Management ACCOUNTABILITY The family entrusts the child’s care to the healthcare team. Family members expect this team to provide good medical and nursing care and to avoid mistakes that cause harm. The Quality and Safety Education for Nurses (QSEN) project, established in 2005, is designed “to meet the challenge of preparing future nurses who will have the knowledge, skills and attitudes (KSAs) nec- essary to continuously improve the quality and safety of the healthcare systems within which they work” (QSEN, 2014). The project focuses on competencies in six areas: patient-centered care, teamwork and collaboration, evidence-based practice, qual- ity improvement, safety, and informatics.

PATIENT SAFETY Patient safety is defined as the freedom from unintentional injury caused by medical care; it includes freedom from harm by death-related or adverse drug events, misidentification of the

Figure 1–8 It is often desirable from a family and cost perspective to provide health care in the home, and technologic advances have made this possible. But is it less costly to provide care in the home for a child with technology assistance? Are the parents’ out-of-pocket expenses for medical supplies considered? What about a parent’s need to discontinue employment to care for the child? What is the emotional strain on families who care for their child 24 hours a day, 7 days a week? What support is needed by these families to continue providing this level of care at home? See Chapters 10 and 12 for answers.

Figure 1–9 An important client safety action is to verify the identity of the child prior to performing any procedure or administering medication. The nurse needs two forms of identification. In this case the child’s identification bracelet is compared to the name and birth date on the laboratory test form, and the parent also confirms the child’s identity.

Clinical Tip Parents play an important role in their child’s safety as a partner with the child’s healthcare team. Recognize their role and encour- age parents to collaborate with healthcare professionals to keep their child safe in the clinical setting. Encourage them to ask ques- tions and to persist until they understand and agree with the pro- posed outcome of care. Parents also help prevent injuries to their child in the clinical setting, and they may identify potential defi- ciencies or errors in care, such as failure to perform hand hygiene.

Many medical errors within hospitals are “systems errors,” such as medication prescription and dispensing errors, rather than being the error of a single individual. (See Evidence-Based Practice: Medication Errors.) The Joint Commission has National Patient Safety Goals (NPSG) that focus on correct identification of patients, improved staff communication, safe medication admin- istration, infection control, safe use of alarms, identifying patients at risk for suicide, and preventing mistakes in surgery (The Joint Commission, 2014).

Reasons for the higher rate of medication error in children may include the following:

š� Medication dosage is based on weight or body surface area, often making dosage calculations more complex. This means the optimal dose is based on mg/kg and divided by number of doses to be given a day. When suspensions or liquid preparations are used, dosage calculation increases

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10 Chapter 1

Clinical Question Medication error is a significant problem in pediatric nurs- ing because children are at higher risk for serious adverse effects. What characteristics of medication errors involv- ing nurses need more attention by hospital patient safety programs?

The Evidence A large children’s hospital used anonymous reporting of adverse medication events to evaluate medication errors and to identify prevention strategies; however, underreporting by RNs was suspected. When RNs were surveyed to identify situations in which they would not file a safety event or near miss (an error intercepted before it reached the client) report, responses included not enough time and not being aware of a need to report near miss events. The RNs were then edu- cated to recognize events that should be reported and tips to decrease the time needed to report events. Next, they were given data about trends in reported medication errors and near-miss events (e.g., incorrect intravenous fluid use, the need for better storage supply bin labeling, and separation of similarly named fluids). Efforts resulted in an increased event reporting, but nurses still reported inadequate time to submit reports (Hession-Laband & Mantell, 2011).

A prospective study was conducted in three tertiary pediatric hospitals in Canada to review anonymously reported pediatric medication administration errors by nurses working on 18 medical/surgical and critical care units. A total of 372 occurrences of potential errors (34.1%) and actual errors (65.9%) were reported over a 3-month period. The major- ity occurred on medical/surgical units (74%) compared to critical care units (26%). Three primary factors contributed to medication errors: workload, distraction, and ineffective communication (Sears, O’Brien-Pallas, Stevens, et al., 2013).

A meta-analysis of 63 research studies was conducted and aimed at reducing medication errors in children under age 19 years cared for in the hospital and ambulatory settings. Studies focused on preventable events that could lead to inappropriate medication use or potential harm as well as events that caused harm. The events were associated with prescribing, administer- ing, and dispensing medications. Studies that included volun- tary reporting of medication errors or near-miss events were excluded, as it was believed underreporting would exist. Prob- lems identified in studies that affect their usefulness included lack of uniformity in definitions of medication error causes, as well as variations in data collection methods and how outcomes were reported. Although medication error reductions were reported, these problems prevented the identification of good evidence regarding medication error interventions that healthcare facilities should implement (Rinke, Bundy, Velasquez, et al., 2014).

Best Practice Nurses need to learn about the system problems that contribute to medication error, so they can help identify strategies to reduce the risk for error, such as ways to reduce distraction during med- ication preparation and administration. New hospital systems are being implemented to reduce medication error, and strategies to successfully encourage reporting of actual and potential medica- tion errors continue to be needed. Increased reporting by nurses, physicians, and pharmacists would help identify additional fac- tors contributing to medication errors in different units and the effectiveness of new strategies to reduce errors.

Clinical Reasoning Identify the medication error reduction policies and strategies for the inpatient pediatric unit. What medication safety prac- tices have resulted from a review of error reports? Identify two potential strategies to improve medication safety in this setting.

EVIDENCE-BASED PRACTICE Medication Errors

in complexity. Then both the correct dose and the amount of liquid preparation (mg/mL) for that dose must be calcu- lated. Some medications are in concentrations that require dilution, further complicating the accurate medication dos- age calculation.

š� A misplaced decimal when calculating a medication dosage may result in a harmful overdose or ineffective dose. Chil- dren with a critical illness or injury do not have the reserves to deal with a medication overdose.

š� Off-label medications (not approved for use in children by the U.S. Food and Drug Administration) are sometimes prescribed, so the appropriate pediatric dose and adverse effects are unknown.

š� Young children cannot communicate well regarding the adverse effects of medication.

RISK MANAGEMENT Healthcare facilities are challenged to promote optimal patient care and to reduce liability by implementing strategies to reduce medical errors in all child patients. Risk management is a pro- cess established by a healthcare institution to identify, evalu- ate, and reduce the risk of injury to patients, staff, and visitors,

and thus reduce the institution’s liability. This involves the study of causes of medical errors and near-miss errors within a healthcare facility and implementing system changes to prevent future errors similar to those studied. Box 1–2 explains several strategies that have been developed to reduce medication errors in children.

Quality improvement is the continuous study of systems, services, and processes of care, and using that information to improve healthcare processes, services, and patient outcomes. Nurses participate in the development of institutional policies and standards of nursing practice. Hospitals and home health agencies encourage the development of diagnosis-specific nurs- ing care plans and interdisciplinary clinical practice guidelines that serve as minimal standards of care for the facility.

During the development of standards of care for the facility, indicators of effective care by pediatric nurses and other pro- viders are identified. These indicators may measure either the process of care, the facility’s systems, or the expected outcome of care for a specific patient condition. Client records are regu- larly reviewed to identify deviations from the facility standards or clinical practice guidelines. When deviations from expected processes and outcomes are identified, opportunities to improve the system or processes of care provision are explored with all

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Nurse’s Role in Care of the Child: Hospital, Community, and Home 11

Legal and Ethical Issues in Pediatric Care Marvin, a 15-year-old boy with acute nonlymphocytic leuke- mia, has relapsed after a second remission with an acute onset of fever, joint pain, and petechiae (Figure 1–10). A hematopoi- etic stem cell (bone marrow) transplant is one of his therapeutic options. Although Marvin has agreed to a transplant if a suit- able donor is found, he does not want to be resuscitated and placed on life support equipment if he has a cardiac arrest. Marvin has experienced all the burdens of therapy up to this point. He has talked extensively with the hospital chaplain and social worker and feels comfortable with his decision. His parents want an all-out effort to sustain his life until a donor is located.

Marvin’s case illustrates the legal and ethical dilemmas in caring for older children and adolescents, especially since he has the ability to understand and make reasonable decisions. At what age can children make an informed decision about whether to accept or refuse treatment? What happens when the parents and child have conflicting opinions about treatment? How are ethical decisions resolved?

Informed Consent Informed consent is a formal authorization by the child’s parent or guardian allowing an invasive procedure to be performed or for participation in research. Information that must be provided to obtain informed consent includes the following:

š� An explanation of the child’s diagnosis š� A description of the proposed treatment or research; possible

outcome, benefits, and significant risks associated with the proposed treatment or research

š� Alternative treatments and their potential outcome, benefits, and significant risks

š� Answers to questions š� Informing a parent or guardian about the right to refuse

treatment or research participation on behalf of the child

Box 1–2 System Strategies to Reduce Pediatric Medication Errors š� Use the child’s weight in kilograms in all healthcare

settings as the standard weight for prescriptions. š� Look for the child’s weight and age, the calculated

dose, and mg/kg dose on every prescription. Unit dose dispensing systems should be used. The administration rate for all IV medications should be specified.

š� Do not use a zero after a whole number (e.g., 5.0 could be misread as 50) because an error with a 10-fold dosage increase could occur. Use a leading zero before a decimal point when the dose is less than a whole unit to ensure that the decimal is seen (e.g., 0.5 rather than .5).

š� Do not store medications with similar sounding names close together. Look at labels for capital letters that a pharmacy may use to help distinguish between medica- tions with similar sounding names (e.g., DOBUTamine and DOPamine).

š� Expect prescriptions to be typed or written legibly with printed letters. Milliliter rather than teaspoon volume measurement should be used. Electronic pre- scription systems supported by the American Acad- emy of Pediatrics may improve legibility, require all needed prescribing information, and actually calculate the correct dosage for the prescriber (American Acad- emy of Pediatrics, 2013).

š� Follow all guidelines for patient identification before administering the medication, even if bar coding is used.

Clinical Tip The patient’s record is a legal document that is admissible evi- dence in court. Information in the patient’s record must be written in objective terms or appropriately recorded in the electronic medical record. When recording a client’s response to therapy, the nurse must include physiologic responses and exact quotes. The date, time, and nurse’s signature and title are required.

care providers. Recommendations for the revision of institutional standards to further improve care by nurses and other health providers in the institution often result.

Policy and procedure manuals should be current and have evidence incorporated to provide guidance on nursing proce- dures, use of technology, patient education, and evaluation of interventions to promote client safety. Nurses often participate as committee members in the development and revision of these policy and procedure manuals.

Documentation of nursing care is an essential part of risk management and quality improvement. If a patient record is subpoenaed, documented care is considered the only care provided, regardless of the quality of undocumented care. The patient assessment, the nursing care plan, and the child’s responses to medical therapies and nursing care, including the regularly scheduled evaluation of the client’s progress toward nursing goals, must all be documented accurately and sequen- tially. Nurses must also report any untoward incidents that could inhibit the client’s recovery.

Figure 1–10 Marvin, a 15-year-old boy with acute nonlymphocytic leukemia, has definite opinions about his treatment. His parents have a difficult time accepting his opinions when they differ from their own. At what age can children make an informed decision about whether to accept or refuse treatment?

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12 Chapter 1

Despite these limitations in informed consent, children and adolescents should have an opportunity to participate in treat- ment decisions with their parents as reasoning skills develop. Assent is the voluntary agreement to accept treatment or to par- ticipate in a research project. To give assent, the child needs a basic understanding of what will be done and what is required for participation. The child must also know that he or she can say no (dissent). Parents may wish to actively involve the child in listening to the informed consent information and permit them to express agreement or disagreement with treatment. Nurses can help parents recognize when the child is ready to participate in care decisions and help answer questions the child has about the condition and treatment. The parents, however, make final decisions regarding the treatment or research participation. The child’s dissent to participate in research should be respected.

The physician is legally responsible for obtaining informed con- sent. In the case of research, the investigative researcher may for- mally designate a person to obtain informed consent. The nurse should verify that informed consent has been obtained prior to any procedure or research participation, alert physicians to the need for informed consent, serve as a witness for informed con- sent, and respond to questions asked by parents and children.

Consent must be given voluntarily and prior to the proce- dure or research. Parents, as the legal custodians of minor chil- dren, are customarily requested to give informed consent on behalf of a child. Both children and parents must understand that they have the right to refuse treatment at any time.

When parents are divorced and have joint custody, in most cases either may give informed consent. When parents are divorced and one parent has custody, some states limit the paren- tal rights to give informed consent to the parent with custody. Obtain information about your state law regarding custody and who can provide informed consent for healthcare procedures and treatments.

Clinical Tip Obtain legal advice for complex family issues related to guardian- ship, divorced parents disagreeing over care, or a caregiver who is not the legal guardian. Each agency should have designated legal experts or consultants for provision of such legal advice.

Growth and Development Consent Considerations By 7 to 8 years of age, a child is usually able to understand concrete explanations about assent for research participa- tion. Generally, by age 11 years, a child’s abstract reasoning and logic are advanced. By age 14 years, an adolescent can usually weigh options and make decisions regarding consent as capably as an adult.

Developing Cultural Competence Religious Beliefs Jehovah’s Witnesses oppose transfusions of blood products for themselves and their children because they believe transfusions are equivalent to the oral intake of blood, which is morally and spiritually wrong according to their interpretation of the Bible (Leviticus 17:13–14). A Jehovah’s Witness who receives a transfusion believes he or she has committed a sin and may have forfeited everlasting life. Most healthcare facilities have policies to address the care of these children. Every effort is made to avoid the use of blood products with alternative therapies, except when a blood product will be lifesaving. Then a judicial order is sought.

Many children live in homes with a parent and other adult (stepparent, cohabiting unmarried adult, or grandparent) who does not have legal authority to sign consent. Proxy consent can be granted in writing by the parent to another adult so that children can obtain health care when needed. In an emergency, treatment to preserve life or limb does not require consent, if it cannot be immediately obtained. After examining the child and determining that an emergency condition does not exist, nonur- gent treatment should not be provided until the parent or guard- ian with legal authority can be reached (even if by telephone) (AAP, 2011a).

Child Participation in Healthcare Decisions Older children and adolescents often have the cognitive capacity to participate in or make medical decisions, but their rights to make most medical decisions are controlled by state law. Adoles- cents under the age of majority, as defined by state law, are consid- ered minor children, and parental consent is required for medical treatment in the majority of states. Adolescents can legally give informed consent in the following special circumstances:

š� Emancipated minors (economically self-supporting ado- lescents under 18 years of age [e.g., married, pregnant, enlisted, or incarcerated] not subject to parental control) and minor parents of a child patient can legally give informed consent.

š� Mature minors (adolescents between 14 and 18 years able to understand treatment risks) may give independent con- sent to receive or refuse treatment for limited conditions by federal law, such as testing and treating sexually transmit- ted infections, contraception services, substance abuse, and mental health care. However, mature minors do not have authority to consent for general medical treatment in most states (Coleman & Rosoff, 2013).

Child’s Rights Versus Parents’ Rights Parents or guardians have the authority to make choices about their child’s health care except in the following cases:

š� The parents’ choice of treatment does not permit lifesav- ing treatment for the child. See Developing Cultural Compe- tence for information about religious beliefs and emergency treatment.

š� There is a potential conflict of interest between the child and parents, such as with suspected child abuse or neglect.

š� The child and parents do not agree on major treatment options.

Healthcare providers involve adolescents in decision making about major treatment interventions in an effort to promote agreement about the treatment plan. In some cases, adolescents and parents or guardians disagree about a major treatment intervention (e.g., bone marrow transplant, heart transplant). Healthcare providers may try negotiation and compromise as a

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Nurse’s Role in Care of the Child: Hospital, Community, and Home 13

Patient Self-Determination Act The federal Patient Self-Determination Act directs healthcare institutions to inform hospitalized patients about their rights, which include making advance directives (writing a living will or authorizing a durable power of attorney for healthcare deci- sions on the client’s behalf). An adolescent with a serious or life- limiting condition, such as Marvin presented earlier, has a strong and legitimate interest in expressing an opinion about aggressive therapy. The adolescent and parents should be encouraged to talk and reach a joint therapy decision. If the parents and adolescent are unable to agree, the legal issues become complex, as previ- ously described.

Do-not-attempt-resuscitation (or allow natural death) orders have become more common for children with terminal illnesses in which no further aggressive treatments are available or desired. In some cases these children are cared for at home. State health policies and guidelines must be in place for an emergency care provider in the community to honor a written do-not- resuscitate order for a child who has a life-threatening event (Abbott & Stone, 2014). See Chapter 13 for issues related to palliative and end-of-life care.

Ethical Issues Major advances in medical technology—such as the ability to save the lives of severely impaired newborns, to extend the lives of chronically ill and seriously injured children, to perform genetic testing, and to provide gene therapy—have led to challenges for healthcare professionals and parents to make the best decision for the child’s condition. For example, limiting or withdrawing life-sustaining treatment may be appropriate for the child who is severely ill or injured at the end of life to promote comfort, or making a decision not to attempt cardiopulmonary resuscitation (Kodish & Weise, 2016). Healthcare professionals have a moral obligation to deliver care with compassion and respect for the worth and uniqueness of each individual; they must understand and respect religious and cultural differences that impact paren- tal decisions about requesting or refusing a treatment.

Ethics is the philosophic study of morality, and the analysis of moral problems and moral judgments. It is an inquiry into the justification of particular actions. Ethical issues may arise from a moral dilemma—a conflict involving individual beliefs, social values, and ethical principles. Each side of the conflict may sup- port different courses of action (e.g., performing or refraining

first step to help adolescents and parents reach agreement about interventions so that the adolescent’s voice and opinion are con- sidered. Medical consultation may be sought to identify other treatment options that might be acceptable to both the adolescent and parents. The facility’s ethics committee (often composed of healthcare professionals, clergy, consumer representatives, and an ethics expert) usually becomes involved to help resolve the issue. If agreement cannot be reached, the adolescent may need to seek designation as an emancipated minor or ultimately follow the parents’ decision regarding treatment.

CONFIDENTIALITY The Health Insurance Portability and Accountability Act (HIPAA), P.L. 104-191, was enacted by Congress in 1996. One goal of the law is to protect the privacy of citizens by establishing standards for the management of confidential electronic medical information. Healthcare organizations have developed policies to prevent the inappropriate disclosure of protected health information. Patients have the right to determine who can have access to their health information. Sharing protected patient information in the hospital within the hearing of others as well as on social media is a vio- lation of confidentiality. Be aware of policies that hospitals and other health facilities have regarding guidelines for confidential- ity with electronic medical records and for the use of social media.

Confidentiality is an agreement between a client and a pro- vider that information discussed during the healthcare encounter will not be shared without the client’s permission. Adolescents often do not want their parents informed about sensitive health- care information. Their concerns about confidentiality may influence whether or not they seek health care. The electronic medical record systems are an additional challenge to adoles- cent confidentiality, even if seeking care for contraception or a condition such as a sexually transmitted infection. Healthcare systems are developing electronic health record (EHR) systems that can be accessed by parents of adolescents. Guidelines for controlled access to sensitive information are not uniformly built in to those EHR systems so that individual healthcare providers can code some information as private (Daniel, Malvin, Jasik, et al., 2014). The issue of confidentiality for adolescents is further complicated because the parents are responsible for the finan- cial costs of the healthcare services. In some cases parents may get indirect information from health insurance bills. See Families Want to Know: Adolescents and Confidentiality for ways to promote confidentiality.

Families Want to Know Adolescents and Confidentiality Adolescents need a safe and confidential environment to discuss healthcare issues so they will seek health care when needed. Ways to promote confidentiality include the following actions:

š� Discuss the importance to the adolescent and parents about giving adolescents, and the parents, an opportunity to talk in private with the healthcare provider about their concerns. š� Adolescents learn how to speak for themselves about their health concerns. š� This becomes the basis for a trusting relationship with the healthcare professional.

š� Explain the limits of confidentiality. š� Privacy will be maintained unless something dangerous or life threatening regarding the adolescent is revealed. š� The electronic health record and health insurance billing information may reveal some private information to the parents. š� Some conditions require mandatory reporting to the health department, such as tuberculosis and the human

immunodeficiency virus (HIV).

š� Obtain the phone number or other contact information so the adolescent may be contacted to share laboratory test results or to check on response to treatment.

š� Make sure clinic literature is small enough to fit discreetly into a purse or wallet.

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14 Chapter 1

recommendations. Efforts should be made to understand the per- spective and values of the parents, especially when their deci- sion does not match the healthcare provider’s recommendations. Conflict may arise when parents choose to withdraw therapy or request aggressive therapy when the healthcare providers’ rec- ommendations differ. An ethical consultation may be needed to resolve conflicts.

GENETIC TESTING OF CHILDREN With advances in genetics research, it is now possible to test infants and children for the presence of a genetic condition car- rier status. It is also possible to conduct presymptomatic testing for a specific condition, such as Huntington disease or Duchenne muscular dystrophy. Genetic screening of newborns, such as for inborn errors of metabolism, cystic fibrosis, sickle cell anemia, and other conditions, routinely occurs. In this case, the early iden- tification of the genetic condition benefits the infant. A system is in place to confirm the diagnosis, and treatment and follow-up care are available to affected newborns. See Chapter 3 for additional information about ethical issues associated with genetic testing.

ORGAN TRANSPLANTATION ISSUES The death of a child can benefit several other children through organ transplantation, which has become an accepted thera- peutic option for some life-threatening conditions. The limited supply of organs has created numerous ethical issues. Which patients on the waiting list should receive the organs available? Should a patient with multiple congenital anomalies, disabilities, or abnormal chromosomes be eligible for a transplant? Should families be permitted to pay donor families for organs? Should the family’s ability to pay for an organ transplant give a child higher priority for an organ? Should a patient receive a second organ transplant, replacing an organ deteriorating because of rejection? Should parents conceive another child, hoping that the new baby is a potential stem-cell donor for a child with an illness? If so, what pressures does this place on both children as they grow older? Each institution performing organ transplants develops guidelines for ethical decision making regarding these and other questions.

from performing a therapy). Emotions play a significant role in the development of ethical dilemmas. Parents want to pro- tect the child, and they have their vision of what is good for the child. Healthcare professionals have different values than fami- lies because of their culture and life experiences. Differences in values may also exist between members of the healthcare team caring for the child. Regardless, all healthcare professionals want the child to benefit from the care they give.

Nurses may face ethical dilemmas when providing pedi- atric care. They witness parents struggling to decide among treatment options. Pediatric nurses have a responsibility to become knowledgeable about the moral and legal rights of their patients and families and to protect and support those rights. They must work with parents to form a therapeutic alliance, and attempt to prevent conflicts when the values of the fam- ily and healthcare professionals do not match. Pediatric nurses work to find out what is important to the parents in the care of their child. The parents may be able to describe what they wish to avoid having happen to their child, and this could become a starting point for discussion about the child’s care with health- care professionals.

Clinical Tip No matter what decision parents make about their child’s care, they need to be reassured that they are trying to do what they think is best for their child.

Figure 1–11 Due to technological advances that sustain life, parents must sometimes face difficult decisions. If a newborn is certain to have severe disabilities, at what point should parents decide to withhold or withdraw treatment? SOURCE: Courtesy of Carol Harrigan, RNC, MSN, NNP.

Healthcare facilities have an ethics committee to resolve conflicts about treatment decisions between healthcare profes- sionals and the child and family, or to resolve a dispute between healthcare professionals about the care to provide a child. The ethics committee resolves the conflict or dispute by performing an individual case consultation. A healthcare provider or the family can request a consultation.

WITHHOLDING OR WITHDRAWING MEDICAL TREATMENT Newborn John, at 5 days of age, has a birth weight of 1200 grams, acute respiratory distress, and a severe intraventricular hemor- rhage. See Figure 1–11. Consent is being sought by the physician for surgical placement of a ventriculoperitoneal shunt. Regard- less of intensive medical care and planned surgical intervention, the newborn is expected to have a severe disability if he survives. The newborn’s condition is critical, and it is not certain how well he will respond to surgery.

The Child Abuse and Treatment Act of 1984, also known as the Baby Doe Regulations, defines withholding of medically indicated treatment for a child with a life-threatening condition as medical neglect, except when care is futile (Douglas & Dahnke, 2013). This act was enacted to protect the rights of newborns with severe defects. Futility is a situation in which treatments do not provide a clear clinical benefit. Physicians are not obligated to offer interventions that cause extreme pain and suffering when there is no or limited potential benefit.

Parents are participants in the decisions made about care for infants with severe disabilities and children with life-limiting conditions. They are entitled to full information about the risks and benefits of a procedure and the child’s long-term progno- sis. Parents should have clear information on the seriousness of the child’s condition and prognosis, the child’s potential quality of life, the degree of pain and suffering, and physician

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Nurse’s Role in Care of the Child: Hospital, Community, and Home 15

The Children’s Health Act, P.L.106-310 passed in 2000, directed the development of specific criteria, policies, and pro- cedures to address the specific needs of children regarding priori- ties for organ allocation. Guidelines for the allocation of hearts, lungs, livers, and kidneys for children have been developed that give preference to children based on factors in addition to time on the waiting list (Workman, Myrick, Meyers, et al., 2013).

Partnering With Families The topics discussed in this chapter reflect the current chal- lenges children and their families face in the healthcare system—access to health care, specific disease and injury risks, and ethical and legal concerns. A nurse in collaboration

with parents and children is essential every step of the way regarding:

š� Obtaining informed consent and assent š� Respecting that the parent is an expert with regard to the

child’s care š� Acknowledging and supporting cultural values in the provi-

sion of care š� Preparing parents to assume ongoing complex healthcare

responsibilities for their child

Developing relationships with children and families is challenging, exciting, and ultimately gratifying for nurses who choose to specialize in pediatrics.

Chapter Highlights š� Roles of nurses in caring for children include direct patient

care, patient education, patient advocacy, case management, and research.

š� Nurses care for children in many different settings: the emer- gency department, radiology, inpatient units, critical care units, postanesthesia units, outpatient clinics, schools, childcare centers, physician offices, community health centers, rehabili- tation centers, and the home.

š� Family-centered care is a method designed to meet the emo- tional, social, and developmental needs of children and fami- lies needing health care.

š� Nurses must identify culturally relevant facts about their clients to provide appropriate and competent care to an increasingly diverse population.

š� Unintentional injury is the leading cause of death for children between 1 and 19 years of age.

š� The State Children’s Health Insurance Program (SCHIP) and the Patient Protection and Affordable Care Act are programs that make health insurance more affordable for families with limited incomes.

š� Documentation of nursing care is essential for risk manage- ment and quality improvement. Be sure to include the patient assessment, the nursing care plan, the child’s responses to

medical therapies and nursing care, and a regular evaluation of the child’s progress in meeting nursing goals.

š� Informed consent is the formal preauthorization for an invasive procedure or participation in research. Parents typically give informed consent for children under 18 years of age unless the child is an emancipated minor (a self-supporting adolescent not subject to parental control).

š� Children should be actively involved in decisions about their care as their decision-making abilities develop. Although they cannot provide informed consent to participate in research, children should receive information about a research project and be asked their opinion about participation.

š� Because adolescents fear disclosure of confidential information, they may avoid seeking health care. It is important to tell adoles- cents when confidentiality cannot be maintained, such as when a reportable disease must be reported to a public health agency or when an electronic health record may be reviewed by parents.

š� Adolescents with a potentially life-limiting health condition should be encouraged to talk with their parents and to make joint decisions about future care.

š� A formalized ethical decision-making process may assist healthcare providers and families in making important decisions about withholding, withdrawing, or limiting a child’s therapy.

Recall 3-year-old Manny, at the beginning of the chapter, who has a seizure disorder. He receives his care in a mobile van sent to his community by the local children’s hospital. Manny has a regular source of care because his family income qualifies him for the state’s Child Health Insurance Program (CHIP).

Clinical Reasoning in Action 1. List at least five competencies nurses need to care for children. 2. Identify at least four different settings in which a child with a

seizure disorder could receive health care. 3. List three specific injury prevention messages for a child of

Manny’s age that should be provided to Manny’s parents to reduce his risk for morbidity and mortality.

4. List specific steps the nurse should use in the healthcare set- ting to ensure that an error is avoided for Manny’s prescribed seizure medication and administration by his parents.

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16 Chapter 1

References Abbott, J. T., & Stone, S. (2014). End of life. In J. A.

Marx, R. S. Hockberger, & R. M. Walls (Eds.), Rosen’s emergency medicine—Concepts and clinical practice (8th ed., pp. e47–e58). Philadelphia, PA: Elsevier Saunders.

American Academy of Pediatrics (AAP) Committee on Pediatric Emergency Medicine and Committee on Bioethics. (2011a). Policy statement—Consent for emergency medical services for children and adoles- cents. Pediatrics, 128(2), 427–433.

American Academy of Pediatrics (AAP), Steering Committee on Quality Improvement and Management, & Com- mittee on Hospital Care. (2011b). Policy statement— Principles of pediatric patient safety: Reducing harm due to medical care. Pediatrics, 127(6), 1199–1210.

American Academy of Pediatrics (AAP). (2013). Electronic prescribing in pediatrics: Toward safer and more effective medication management. Pediatrics, 131(4), e1350–e1356.

American Nurses Association, National Association of Pediatric Nurse Practitioners, & Society of Pediat- ric Nurses. (2015). Pediatric nursing: Scope and standards of practice (2nd ed.). Silver Spring, MD: NursesBooks.org.

Baker, L. R., & Cormier, L. A. (2013). Disaster prepared- ness and families of children with special healthcare needs: A geographic comparison. Journal of Com- munity Health, 38, 106–112.

Bindler, R. C., & Ball, J. W. (2007). The Bindler-Ball healthcare model: A new paradigm for health promo- tion. Pediatric Nursing, 22(2), 121–126.

Centers for Disease Control and Prevention, National Center for Health Statistics. (2015a). Health data interactive. Retrieved from www.cdc.gov/nchs/hdi.htm

Centers for Disease Control and Prevention, National Center for Health Statistics. (2015b). Ten lead- ing causes of injury deaths, United States, 2013. Retrieved from http://www.cdc.gov/injury/wisqars/ leading_causes_death.html

Centers for Medicare and Medicaid Services. (2014a). Medicaid: Children. Retrieved from http://www .medicaid.gov/Medicaid-CHIP-Program-Information/ By-Population/Children/Children.html

Centers for Medicare and Medicaid Services. (2014b). 2013 poverty level guidelines. Retrieved from http:// www.medicaid.gov/Medicaid-CHIP-Program-Informa- tion/By-Topics/Eligibility/Downloads/2013-Federal- Poverty-level-charts.pdf

Christian, B. J. (2012). Translational research—Improving everyday pediatric nursing practice through research

and evidence-based practice. Journal of Pediatric Nursing, 27, 280–282.

Coleman, D. L., & Rosoff, P. M. (2013). The legal author- ity of mature minors to consent to general medical treatment. Pediatrics, 131(4), 786–793.

Daniel, S., Malvin J., Jasik, C. B., & Brindis, C. D. (2014). Sensitive health care services in the era of electronic health records: Challenges and opportunities in protecting confidentiality for adolescents and young adults. Retrieved from http://bit.ly/ElectronicHealth Record-Brief

Douglas, S. M., & Dahnke, M. D. (2013). Creating an ethical environment for parents and health providers dealing with the treatment dilemmas of neonates at the edge of viability. Journal of Neonatal Nursing, 19, 33–37.

Federal Interagency Forum on Child and Family Statistics. (2013). America’s children: Key national indicators of well-being, 2013. Retrieved from http://childstats .gov/americaschildren/index.asp

Federal Interagency Forum on Child and Family Statistics. (2014). At a glance for 2014: America’s children: Key national indicators of well-being. Retrieved from http://childstats.gov/americaschildren/index.asp

Fry-Bowers, E. K. (2015). The ACA and insurance impli- cations for children with special health care needs. Journal of Pediatric Health Care, 29(2), 212–215.

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Kodish, E., & Weise, K. (2016). Ethics in pediatric care. In R. M. Kliegman, B. F. Stanton, J. W. St. Geme, & N. F. Schor (Eds.), Nelson textbook of pediatrics (20th ed., pp. 27–33). Philadelphia, PA: Elsevier.

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Health Interview Survey, January–September 2014. National Center for Health Statistics. Retrieved from http://www.cdc.gov/nchs/data/nhis/earlyrelease/ insur201503.pdf

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Pontius, D. J. (2013). Health literacy part 1: Practical techniques for getting your message home. NASN School Nurse, 28(5), 246–252.

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Rinke, M. L., Bundy, D. G., Velasquez, C. A., Rao, S., Zerhouni, Y., Lobner, K., . . . Miller, M. R. (2014). Interventions to reduce pediatric medication errors: A systematic review. Pediatrics, 134(2), 338–360.

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Woodward, J., & Rice, E. (2015). Case management. Nursing Clinics of North America, 50, 109–121.

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Chapter 2

Family-Centered Care and Cultural Considerations

Learning Outcomes

2.1 Describe key concepts of family-centered care.

2.2 Compare the characteristics of different types of families.

2.3 Contrast four different parenting styles and analyze their impact on child personality development.

2.4 Explain the effects of major family changes on children.

2.5 List the categories of family strengths that help families develop and cope with stressors.

2.6 Summarize the advantages of using a family or cultural assessment tool.

2.7 Develop a family-centered nursing care plan for the child and family.

2.8 Describe cultural influences on the family s beliefs about health illness and treatments.

2.9 Discuss nursing interventions for providing culturally sensitive and competent care to the child and family.

Casey has made a lot of progress since the car accident, but the doctors have told us that the recovery process will take a very long time. I know he will depend on us to take care of him when he is discharged from the hospital. —Mother of Casey, 16 years old

Family and Family Roles The U.S. Census Bureau defines a family as two or more individ- uals who are joined together by marriage, birth, or adoption and live together in the same household (U.S. Census Bureau, 2013). More broadly, however, a family may be a self-identified group of two or more persons joined together by shared resources and emotional closeness, whether or not they are related by blood, marriage, or adoption, or even living in the same household. The family, as defined by its members, is likely to be dynamic,

because membership often changes over time. For example, second marriages often integrate children into a newly formed family, and spouses of married children are integrated into an existing family while the newly married couple begins a new family. Family members may live in different cities, states, or even countries. So, there is no typical family.

Generally, family members depend on each other for emo- tional, physical, and economic support. Families are guided by a common set of values or beliefs about the worth and importance of certain ideas and traditions. These values often

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18 Chapter 2

History of Family-Centered Care Family-centered care became integral to the nursing care of chil- dren when it was recognized that families had a significant role in promoting the psychosocial and developmental needs of chil- dren in the hospital. When parents were initially allowed to stay with hospitalized children, nurses and other health profession- als noticed that children were quieter, happier, and recovering sooner. Research confirmed that children as well as parents had decreased anxiety when the parents were allowed to be pres- ent during their child’s painful procedures. Allowing parental involvement in the plan of care is beneficial to both the hospital- ized child and the family (Committee on Hospital Care & Insti- tute for Patient and Family-Centered Care, 2012).

Nurses have long embraced the family-centered care philosophy. This philosophy is also becoming more widely accepted by other health professionals. Parents are now rec- ognized as partners in their child’s care (see Figure 2–1), not as visitors in the healthcare setting, as patient- and family- centered care has become the standard of care in the pediatric setting (Dokken & Buell, 2011). The Society of Pediatric Nurses and the American Nurses Association have developed nurs- ing practice guidelines for family-centered care, as shown in Box 2–1. For additional information related to the hospitalized child, see Chapter 11.

Promoting Family-Centered Care Collaborating with families in the provision of health care is essential to promote the best outcome when caring for children. Families have important knowledge to share about their child, their child’s health condition, and how their child responds to various actions and events. They also need access to informa- tion that will make it possible for them to fully participate in planning and decision making. Parents have a role in develop- ing an effective collaborative relationship with nurses and other health professionals. Parents often become experts in their child’s health condition and learn to advocate for their child. They also must learn to communicate effectively with the health profes- sionals caring for their child, and in the process develop a trust- ing relationship.

bind family members together. These beliefs are greatly influ- enced by external factors, including cultural background, social norms, education, environmental influences, socioeconomic status, and beliefs held by peers, coworkers, political and com- munity leaders, and other individuals outside the family unit. Because of the influence of these external factors, a family’s values may change considerably over the years, or members within a family may hold values that conflict with those of other family members.

Roles of the family include the following:

š� Caring, nurturing, and educating children š� Maintaining the continuity of society by transmitting

the family’s knowledge, customs, values, and beliefs to children

š� Receiving and giving love š� Preparing children to become productive members of society š� Meeting the needs of its members š� Serving as a buffer between its members and environmental

and societal demands while advocating or addressing the interests and needs of the individual family members

Individual family members take on certain social and gender roles and hold a designated status within the family based on the values and beliefs that bind extended families together. These values and beliefs may evolve from the family’s cultural values and practices, social norms, education, and other influences to which parents were exposed during childhood, adolescence, and early adult years. Parental roles, including childrearing practices and beliefs, are usually learned through a socialization process during childhood and adolescence.

Parents have important roles that involve childrearing and the long-term care of children until they reach adulthood. Depending on their other roles in society, parents work to suc- cessfully nurture and rear children and to help them meet role expectations. Parents must also meet the needs of the family unit and provide economic support for the family. Children also learn specific roles through a socialization process. Parents set expec- tations of behavior with discipline and modeling of appropriate behavior.

Ideally the family is a child’s source of strength and sup- port, the major constant in the child’s life. Families are intimately involved in their children’s physical and psychologic well-being, and they play a vital role in the health promotion and health maintenance of their children. By respecting the family’s role, strengths, and experiences with the healthcare system, nurses have an opportunity to develop an effective partnership with the child and family as they make healthcare decisions that promote the child’s health. This partnership between nurses and families is known as family-centered care.

Family-Centered Care Family-centered care is a philosophy of health care in which a mutually beneficial partnership develops between families and the nurse, and also other health professionals. In this way the priorities and needs of the family are addressed when the family seeks health care for the child. Each party respects the knowl- edge, skills, experience, and cultural beliefs that the other brings to the healthcare encounter. This is in contrast to family-focused care, in which the role of the health professional is that of an expert who directs care, tells the family what to do, and inter- venes on behalf of the family.

Figure 2–1 A health facility policy that permits a parent to be present during a procedure performed on a child is an example of a family-centered care policy. The parent plays an important role in providing security and comfort to this child who is having blood drawn.

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Family-Centered Care and Cultural Considerations 19

Beyond the provision of nursing care itself, children and par- ents can participate in the development of policies and guide- lines for family-centered care in all types of healthcare settings. Their experiences while receiving care in the healthcare setting may reveal valuable insights. Taking parents’ perspectives into consideration can be critical for staff and hospital administra- tors in providing quality patient care and achieving successful patient satisfaction. Parents who exhibit leadership qualities can be empowered to serve on advisory boards or councils, repre- senting the family and community perspective.

Parents can also serve a valuable role in family-to-family support networks as mentors to new families entering the health- care system for a new chronic condition. Some parents may help raise awareness about specific healthcare issues, serve as advo- cates for public policy issues, and assist with fundraising activi- ties. Guidelines for working with families as advisors and tools for assessing the family-centered policies in various healthcare settings are available from the Institute for Patient- and Family- Centered Care.

It is important to consider how a healthcare setting’s writ- ten policies, procedures, and literature for families refer to fami- lies and what attitudes these materials convey. Words such as policies, allowed, and not permitted imply that hospital personnel have authority over families in matters concerning their children. Words such as guidelines, working together, and welcome commu- nicate an openness and appreciation for families in the care of their children.

Family Composition Families are diverse in structure, roles, and relationships. Various types of families—both those considered traditional and nontraditional—exist in contemporary U.S. society. This section identifies common types of family structures:

š� In the nuclear family, children live in a household with both biologic parents and no other relatives or persons. One par- ent may stay home to rear the children while one parent works, but more commonly, both parents are employed by choice or necessity. Two-income families must address

Box 2–1 Concepts of Family-Centered Care š� The family is acknowledged as the constant in the

child’s life and a partner in the child’s health care. š� The family, child, and health professionals work

together in the best interest of the child and the fam- ily. Over time, the child assumes a partnership role in his or her health care.

š� Health professionals listen to and respect the skills and expertise that the family brings to the relationship.

š� Trust is a fundamental element of the relationship between the family, child, and health professionals.

š� Communication occurs in an open, unbiased manner and is ongoing.

š� Families, children, and health professionals make decisions regarding the child’s care in a collaborative manner in all healthcare settings and for all types of health care needed (e.g., health promotion, health maintenance, acute care, chronic condition care, and end-of-life care). Negotiation may be involved in col- laborative decision making.

š� The child is supported to learn about and participate in his or her health care and decision making. The adolescent is supported to assume a partnership role in his or her health care and in the transition to adult health care.

š� The racial, ethnic, cultural, and socioeconomic back- ground of the family and child, as well as family traditions, are honored. Health professionals work to integrate these values and the preferences of the family and child when planning and providing health care.

š� Family-to-family and peer support are encouraged. š� Healthcare settings develop policies, procedures,

practices, and systems that are family friendly and family centered; they support the choices the family and child make regarding care.

š� Health information for children and families is avail- able and provided to match the range of cultural and linguistic diversity in the community as well as the health literacy levels.

SOURCE: Data from Lewandowski, L. A., & Tesler, M. D. (Eds.). (2008). Family-centered care: Putting it into action. The SPN/ANA Guide to Family- Centered Care. Washington, DC: American Nurses Publishing; Committee on Hospital Care & Institute for Patient and Family- Centered Care. (2012). Patient and family-centered care and the pediatrician’s role. Pediatrics, 129(2), 394–404; Hughs, D. (2014). A review of the literature pertaining to family- centered care for children with special health care needs. Retrieved from http:// lpfch-cshcn.org/publications/research-reports/a-review-of-the-literature- pertaining-to-family- centered-care-for-children-with-special-health-care- needs/

Clinical Tip Some healthcare facilities are developing family resource centers to provide consumer information and support (Figure 2–2). In most cases, the resource center is a consumer-oriented health library with staffing, but peer support services may also be coor- dinated through the center. Families can be supported to access useful information that helps them become informed participants in decision making about their child’s care. In addition, the family resource center may serve as a place for family members to read, rest, and reflect (Institute for Patient- and Family-Centered Care, 2013).

Figure 2–2 The family resource center provides an opportunity for family members to obtain more information about their child’s illness from the pediatric nurse educator. This nurse uses pictures from a chart to explain a child’s illness to the parent.

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20 Chapter 2

š� The blended or reconstituted nuclear family includes two par- ents with biologic children from a previous marriage or rela- tionship who marry or cohabit. This family structure has become increasingly common due to high rates of divorce and remarriage. Potential advantages to the children may include better financial support and a new supportive role model. Stresses can include lack of a clear role for the step- parent, lack of acceptance of the stepparent, financial stresses when two families must be supported by stepparents, and communication problems.

š� A binuclear family is a postdivorce family in which the bio- logic children are members of two nuclear households, with coparenting by the father and the mother. The children alter- nate between the two homes, spending varying amounts of time with each parent in a situation called coparenting, usu- ally involving joint custody. Joint custody is a legal situation in which both parents have equal responsibility and legal rights, regardless of where the children live. The binuclear family is a model for effective communication. It enables both biologic parents to be involved in a child’s upbringing and provides additional support and role models in the form of extended family members.

š� A heterosexual cohabiting family describes a heterosexual cou- ple who may or may not have children and who live together outside of marriage. This may include never- married indi- viduals as well as divorced or widowed persons. Some individuals choose this model for personal reasons; others do so for financial reasons or to seek companionship.

š� Gay and lesbian families include those in which two adults of the same gender live together as domestic partners with or without children, and those in which a gay or lesbian single parent rears a child. Children in these families may be from a previous heterosexual union, or be born to or adopted by one or both member(s) of the same-sex couple. A biologic child may be born to one of the partners through artificial insemina- tion or through a surrogate mother. Children who are adopted or born into lesbian and gay families are highly valued, as with heterosexual families (see Figure 2–5). Evidence suggests that children reared by same-sex couples are as well adjusted as those born into heterosexual families and have positive peer relationships (Haney-Caron & Heilbrun, 2014).

important issues such as childcare arrangements, household chores, and how to ensure quality family time. Dual-career/ dual-earner families are now considered the norm in modern society.

š� The child-free family is a growing trend. In some cases, a fam- ily is child free by choice; in other cases, a family is child free because of issues related to infertility.

š� In an extended family, a couple shares household and child- rearing responsibilities with parents, siblings, or other rela- tives. Families may reside together to share housing expenses and child care. However, in many cases, the child may be residing with the grandparent and one parent because of issues associated with unemployment, parental separation, parental death, or parental substance abuse. Grandparents may raise children due to the inability of parents to care for their own children (see Figure 2–3).

š� An extended kin network family is a specific form of an extended family in which two nuclear families of primary or unmarried kin live in proximity to each other. The fam- ily shares a social support network, chores, goods, and services.

š� The single-parent family is becoming increasingly common. In some cases, the head of the household is widowed, divorced, abandoned, or separated. In other cases, the head of the household, most often the mother, remains unmarried. Single-parent families often face difficulties because the sole parent may lack social and emotional support, need assis- tance with childrearing issues, and face financial strain (see Figure 2–4).

š� The single-mother-by-choice family represents a family com- posed of an unmarried woman who chooses to conceive or adopt without a life partner (Maggio, 2013). Although these families are included in the single-parent family statistics, they differ significantly in that these women typically are older, college educated, and financially stable and have contemplated pregnancy significantly prior to conceiving (Single Mothers by Choice, 2013).

Figure 2–3 This child lives with his mother and grandparents following the divorce of his parents. The special attention provided by his grandfather is helping him adapt to the change in his family, and it enables the mother to go to work feeling confident that her son is safely cared for before and after school.

Figure 2–4 Single-parent families account for nearly one third of all U.S. families. What types of challenges do single-parent families face? SOURCE: © Phase4Photography/Fotolia.

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Family-Centered Care and Cultural Considerations 21

accommodate family and childcare time. Fathers are sometimes additionally challenged to develop closeness with the infant and to learn how to care for the infant, especially when they may not have had role models or any childcare experience. Most parents find that caring for infants and children takes more time than anticipated.

Nurses can help new parents through this important transition by listening to the challenges they describe during the infant’s first health visits. Encourage fathers and mothers to attend and participate in health promotion visits with the healthcare provider so that positive parenting can be supported. Answer questions and offer ideas to address described problems that the parents may be too tired to solve on their own. Help them recognize that frustrations and feelings they have regarding the challenges of infant care are normal and expected. Encourage both parents to become active in caring for the infant and to gain comfort in that care. Help each parent find activities that she or he enjoys with regard to infant care to encourage interaction and bonding with the infant.

Family Functioning Transition to Parenthood Choosing to become a parent is a major life change for adults. Many couples experience significant family and cultural pressure to have a baby. Mothers may be eager to have a child but be con- cerned about fulfilling all the expectations of others (father, the baby, other children, her parents, close friends, and employer). Fathers anticipate increased responsibility and many are con- cerned about their ability to provide adequate support for the family.

At the time of birth, the parents experience stresses and challenges along with feelings of pride and excitement. Both mothers and fathers make adjustments to their lifestyles to give priority to parenting. The baby is dependent for total care 24 hours a day, and this often results in sleep deprivation, irri- tability, less personal time, and less time for the couple’s rela- tionship. In addition, the family often experiences a change in financial status.

Several factors influence how well the parents adjust to their new role. Social support provided to the mother, especially by the father, is important for the mother’s adjustment. Marital happi- ness during pregnancy is an important adjustment factor for both parents. Infants with significant health conditions or those with difficult temperaments can cause extra stress for the parents and affect their adjustment to the parenting role.

With the birth of the first child, both mothers and fathers have challenges related to renegotiating their employment to

Figure 2–5 Children raised in a homosexual family have been found to do as well emotionally, behaviorally, and socially as those born into heterosexual families (Haney-Caron & Heilbrun, 2014). These parents are as dedicated as heterosexual parents to promoting the growth and development of their children. SOURCE: Galina Barskaya/Fotolia.

Clinical Tip It is important to establish which parent has legal custody, current visitation policies, and other variables (e.g., restraining orders and supervised visitation) when communicating information to parents about their children. Certain legal issues may prohibit the nurse from sharing some information with the noncustodial parent.

Clinical Tip Eligible parents of newborns and adopted children are entitled to 12 work-weeks of unpaid leave during a 12-month period initially authorized under the federal Family and Medical Leave Act of 1993. Vacation or sick leave may often be used to pay for time away from work. This act also applies if a child, spouse, or par- ent of the employee develops a serious health condition. The employee is entitled to return to the previous position or an equiv- alent position with the same pay, benefits, and other conditions (U.S. Department of Labor, 2012).

Parental Influences on the Child The qualities of family relationships and of family behaviors are important aspects of family strengths and family functioning. Positive family relationships are characterized by parent–child warmth and supportiveness. Warm parent–child relationships can buffer children from stress and promote positive cognitive and social outcomes. Parents who are warm and place high demands on their children for appropriate behavior have chil- dren who tend to be content, self-reliant, self-controlled, and open to learning in school.

Mothers and fathers each contribute to the psychologic, emotional, and social health and development of their children. Both parents provide affection, nurturing, and comfort. They teach children life skills and healthy lifestyles. Although focus is frequently on the role of the mother, research has demonstrated that fathers too are important in the child’s development (Bright Futures, 2012).

Family Size The size of the family influences the amount of attention given to children. In small families, parents often have more time to give attention to the children, to encourage achievement, to meet family expectations, and to support involvement in community activities. Children in larger families are encouraged to be coop- erative so that the family group functions well. The child usually receives less personal attention from the parents and must often turn to others in the family for support. Family finances may be more limited in large families. Children may adopt a specialized family role to gain recognition, such as the “responsible one,” “the clown,” or “the black sheep.”

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Sibling Relationships Siblings are the first peers of a child and often have a lifelong rela- tionship lasting up to 70 or more years. Siblings, especially those of the same gender, who are closer in age tend to have a closer relationship because they often share many common experiences through childhood and adolescence. In general, for children who are more widely spaced in age, the parents have greater influence than do the siblings. However, the older sibling may be a strong role model for younger brothers and sisters.

Sibling rivalry exists between children at times in all fami- lies, but most children learn to share, compete, and compromise with their siblings. Some sisters and brothers take on roles such as protector, problem solver, friend, and supporter for dealing with issues in the family and in the environment. Some siblings learn to work well together to maintain privacy or to form a coali- tion for negotiating with the parents. Usually, an older sister or brother helps reinforce rules and roles in the family by prompt- ing and inhibiting certain patterns of behavior in the younger siblings. However, one sibling may test the waters by breaking a previously implicit rule to determine how much flexibility is allowed in certain family rules.

Children develop different personalities because of the need to establish a distinct identity for themselves and to be seen as unique in the family. Siblings may share some experi- ences, but they are often exposed to different environmental experiences that also help shape their personalities. Few if any personality differences tend to result solely from the birth order of the child. Firstborn children, on average, have slightly higher IQs and greater achievement in school and in their careers, which may be related to the fact that they have all the atten- tion of the parents until the next baby comes along (Craig & Dunn, 2013).

Parenting The family is an important component in the lives of all chil- dren, and it plays an essential role in fostering the development of infants, children, and youth. A significant concept in families is that of parenting. Parenting is a leadership role in the family in which children are guided to learn acceptable behaviors, beliefs, morals, and rituals of the family and to become socially respon- sible contributing members of society. The manner in which children are parented, in combination with their individual per- sonality traits and characteristics, influences their developmental outcomes.

Parents have responsibility for providing stability to chil- dren with a nurturing, safe, and structured environment. Every child needs to have physical and emotional space in which to grow and develop. This space enables the child to personally

Developing Cultural Competence Family Structure and Roles A family’s structure and roles are largely dependent on cultural influence. For example, culture may determine who has authority (head of household) and is the primary decision maker for other members of the family. Some- times the decision maker role varies by the type of deci- sions to be made. For example, in some cultures, such as Hispanic, decisions regarding the health care of children are primarily the responsibility of the female, whereas other decisions are male dominated. Family dominance patterns may be patriarchal, as may be seen in Appalachian cultures; matriarchal, as may be seen in African American cultures; or more egalitarian, as may be seen in European American cultures.

PARENTING ATTRIBUTE PARENTAL WARMTH PARENTAL CONTROL

High level

Warm, nurturing Express affection and smile at children frequently Limit criticism, punishment Express approval of child

Restrictive control of behavior Survey and enforce compliance with rules Encourage children to fulfill their responsibilities May limit freedom of expression

Low level

Cool, hostile Quick to criticize or punish Ignore children Rarely express affection or approval Rejection may be seen

Permissive, minimally controlling Make fewer demands Fewer restrictions on behavior or expression of emotion Permit freedom in exploring environment

TABLE 2–1 Characteristics of Significant Parenting Attributes

find the relationship balance between closeness and distance, as well as safety and risk. Parents also provide their children with the values, beliefs, rituals, and behaviors learned and transmit- ted across family generations. See Developing Cultural Competence: Family Structure and Roles. To be successful in parenting, parents must have a certain flexibility that enables the family to adapt and adjust to family changes with time and other significant stressors and challenges.

To be successful parents, implement reasonable limit setting (established rules or guidelines for behavior) on children’s auton- omy while they learn values and self-control. At the same time, parents need to foster the child’s curiosity, initiative, and sense of competence. Parents use different styles to parent their chil- dren. Parental warmth and control are two major factors that are important in the development of children. Parental warmth refers to the amount of affection and approval displayed. Parental control refers to how restrictive the parents are regarding rules. See Table 2–1 for the characteristics associated with parental warmth and control.

Diana Baumrind identified three parenting styles (authori- tarian, authoritative, and permissive) and described the influences each style has on children. This proposed classification is still useful in identifying parenting behavior (Baumrind, 2012, 2013), as is another parenting style, called indifferent, that exists in some families (Craig & Dunn, 2013). Although families generally exhibit one style, they may vary their style for certain situations. Table 2–2 shows characteristics or parenting styles by levels of warmth and control.

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Family-Centered Care and Cultural Considerations 23

Indifferent Parents Indifferent parents display little interest in their children or in their roles as parents. They do not demonstrate affection or approval of the children, nor do they set limits or controls on the children. This may occur because of disinterest, or because their lives are busy and stress filled, leaving little time or energy for their chil- dren. Children who experience this style of parenting often have the worst outcomes, such as destructive impulses and delinquent behavior. If the parents are also hostile, the child often develops delinquent behavior (Craig & Dunn, 2013).

Parent Adaptability Parents who are able to adapt their behavior to meet the needs of children at different developmental stages are also more effec- tive. Parenting styles may change as the child grows older. For example, parents may use negotiation to help the child develop problem-solving skills and learn how to compromise and get along with others. This enables the child to have more self- control and self-responsibility over time. Parents and some chil- dren can develop shared goals and jointly participate in decision making, whereas other children require constant negotiation for decision making. See Families Want to Know: Guidelines for Promot- ing Acceptable Behavior in Children.

Assessing Parenting Styles Nurses can assess parenting styles by asking families how they handle situations that require setting limits. The nurse in all set- tings is often in a position to discuss parenting styles and to offer suggestions for managing certain types of child behaviors that are frustrating to the family. Keep in mind that no two children are alike, and parents often must vary their parenting styles for different children in the family. For example, children’s tempera- ments are often tied to their behavioral style. (See Chapter 4 for more information on child temperament.) One child may need very clear limits set with discussion and reinforcement, whereas a sibling may immediately respond to the parents’ limit setting without a need for discussion. See Developing Cultural Compe- tence: Cultural Inf luences on Parenting.

Authoritarian Parents Authoritarian parents tend to be punitive and adhere to rigid rules, or be more dictatorial. Parents who use this style might say, “Because I’m your parent, that’s why,” “A rule is a rule,” or “Just do what I say.” While this style sets firm limits, those limits or rules are not negotiable or open to any discussion. Parents expect family beliefs and principles to be accepted without ques- tion. Children have no opportunity to participate in the family decision-making process. Children with authoritarian parents do not develop the skills to examine why a certain behavior is desir- able or how their actions might influence others.

Authoritative Parents Authoritative parents use firm control to set limits, but they estab- lish an atmosphere with open discussion, or are more demo- cratic. Although the limits for behavior are clear and reasonable, the child is encouraged to talk about why certain behaviors occurred and how the situations might be handled differently another time. Parents provide explanations about inappropri- ate behaviors at the child’s level of understanding. Children are allowed to express their opinions and objections, and some flex- ibility is permitted when appropriate. However, parents make it clear that they are the ultimate authority for decisions. Children with authoritative parents develop a sense of social responsi- bility because they converse about their responsibilities and approaches.

Permissive Parents Permissive parents show a great deal of warmth but set few con- trols or restraints on the child’s behavior. Parents are so intent on showing unconditional love that they fail in performing some important parenting functions. Children are allowed to regulate their own behavior. Discipline is inconsistent, and parents may threaten punishment but not follow through. Both extremes result in excessive permissiveness, and the child does not learn socially acceptable limits of behavior. When the parents do not impose any controls on the child, the child ends up controlling the parents.

PARENTING STYLE WARMTH/CONTROL BEHAVIOR OF PARENT CHILD OUTCOMES

Authoritarian High control Low warmth

Highly controlling, issues commands and expects them to be obeyed Little communication with the child Inflexible rules Permits little independence

May become fearful, withdrawn, and unassertive Girls often passive and dependent during adolescence Boys often rebellious and aggressive

Authoritative Moderately high control High warmth

Accepts and encourages growing autonomy of the child Open communication with the child Flexible rules

Tends to be best adjusted, self-reliant, self-controlled, and socially competent Higher self-esteem Better school performance

Permissive Low control High warmth

Few or no restraints Unconditional love Communication flows from child to parent Much freedom and little guidance

May become rebellious, aggressive, socially inept, self-indulgent, or impulsive May be creative, active, and outgoing

Indifferent Low control Low warmth

No limit setting Lacks affection for the child Focused on stress in own life

May show a high expression of destructive impulses and delinquent behavior

Source: Adapted from Craig, G. J., & Dunn, W. L. (2013). Understanding human development (3rd ed., p. 206). Upper Saddle River, NJ: Pearson.

TABLE 2–2 Parenting Styles by Level of Warmth and Control

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24 Chapter 2

Parents use various strategies for the discipline and pun- ishment of children. Factors that affect what type of discipline is used are related to gender of the child, education level and age of the parents, family income, and culture. In addition, the type of misbehavior and the location in which it occurs affects the type of discipline used. Various discipline strategies that are used with children include the following:

š� Reasoning: Explaining why a behavior or action is inappro- priate or describing how limit setting is important. By rea- soning, parents can help the child understand why certain behaviors are wrong. Similarly, parents can share personal stories and fables to help children understand social and moral values or to better understand acceptable behavior.

š� Behavior modification: Giving positive rewards (such as treats or privileges) or reinforcement for good behavior or con- sistently ignoring inappropriate behavior to minimize the behavior. This encourages children to behave in specified ways.

š� Experiencing consequences: Allowing the child to learn impor- tant lessons associated with misbehavior, such as taking away a toy, using a time-out, withholding privileges, or providing no dessert if the child misses dinner or does not eat nutritious foods (see Figure 2–6).

š� Corporal punishment: Spanking, slapping, or inflicting pain with a paddle, whip, or other object. This type of punish- ment is not recommended by the American Academy of Pediatrics and is considered an aversive strategy (AAP, 2015; Theunissen, Vogels, & Reijneveld, 2015).

š� Scolding or yelling: Using harsh language to verbally repri- mand the child. This is not a recommended strategy as this may decrease the child’s self-esteem. See Chapters 7 through 9 for age-specific discipline strategies.

Discipline and Limit Setting Discipline is a method for teaching the rules that govern behavior or conduct. Punishment is the action taken to enforce the rules when the child misbehaves. Parenting styles play an important role in the type of discipline and punishment used with children. When clear limits are set and consistently maintained, as with authorita- tive parenting, punishment may be needed less often. Limit setting and firm control of those limits are important discipline methods used so children learn to what extent they can safely and inde- pendently operate within the environment. Firm limits also help children feel secure because they are reassured by consistency and the sense of protection perceived by the limits. Punishment helps children learn that there are consequences for misbehavior, and that other individuals may be affected by that behavior. This helps children develop a sense of responsibility for their behavior.

Families Want to Know Guidelines for Promoting Acceptable Behavior in Children

š� Set realistic expectations and directions for behavior based on the child’s age and understanding; consistently enforce the expected directions and behaviors.

š� Focus on promoting appropriate and desirable behaviors in the child: š� Model or suggest appropriate behavior; š� Review expected behavior for special situations, such as a family party, going to the movies, or other social events; š� Help the child distinguish between inside and outside voice and behaviors; and š� Praise or reward the child for using appropriate behaviors.

š� As soon as any inappropriate behavior begins, tell the child and offer guidelines for behavior change or provide a distraction.

š� When reprimanding the child, focus on the behavior rather than stating that the child is bad. Explain how the behavior is inappropriate; how it makes you, as the parent, and any other person involved feel. Avoid ridicule or accusation that can take the form of shame or criticism. These actions can have an impact on the child’s self-esteem if repeated often enough.

š� Be alert for situations when the child could potentially misbehave, such as when the child is tired or overexcited. Use a distraction to control or calm the child.

š� Help the child gain self-control with friendly reminders (e.g., count to three, as soon as the clothes are on the doll, as soon as you finish the game) regarding the timing for transition to the next event of the day, such as bedtime, putting the toys away, or washing hands before dinner.

š� Discuss reasons and social rules for expected behaviors when the child is old enough to understand.

Developing Cultural Competence Cultural Influences on Parenting Some cultural influences on parenting are associated with chosen lifestyle. For example, living in a predominantly ethnic neighborhood makes it possible to participate in special events that support children in learning about their culture. Parents use the community for social con- tacts that help reinforce patterns of parenting and estab- lish behavioral expectations of their children. Frequent contact or living with the extended family also helps the children learn family and ethnic traditions, behaviors, and values. Additionally, children may be sent to faith- based schools that foster values important to the family.

Clinical Tip Nurses have an important educational role in helping parents iden- tify an appropriate discipline method and how to take an authorita- tive role with their children. Encourage and educate parents about the need to be in charge, to set the rules, and to stand by those rules so that children learn how to behave.

Clinical Tip Time-out is a punishment method of placing the child in a location away from toys and attention as a consequence of misbehavior. The general rule for the length of time-out is 1 minute per year of age (AAP, 2015).

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Family-Centered Care and Cultural Considerations 25

also linked to academic and behavior problems among children (Arkes, 2015). See Table 2–3 for potential effects of divorce on children of different ages.

Sometimes parents are so stressed that their customary par- enting styles become inconsistent. They may be unable to provide the warmth, affection, and support that the children need during this time. Battles over custody, child support, property division, and visitation rights all cause more distress for the children.

Nurses can assist families who are experiencing divorce by inquiring about the circumstances and changes that the child is undergoing. Talk with parents about the child’s fears of abandonment and concerns, reminding parents that even

Special Family Considerations Divorce and Its Effects on Children It is estimated that approximately half of all children in the United States will experience divorce of their parents at some point (Anthony, DiPerna, & Amato, 2014). Children are affected in many ways when the family breaks apart, even if the divorce was preceded by periods of stress and tension in the home. Many children believe they are at fault for the separation and divorce, having said or done something to make the parent leave. When one parent leaves, the children may feel abandoned and divorced by that parent. They may also fear being abandoned by the remaining parent. Children might become engaged in the disputes of parents, and they experience conflicts of loyalty when parents fight for their affection.

In divorces involving a lot of conflict and hostility, the chil- dren might experience increased problems with adjustment. When they must make a lot of changes in their lives in addition to the parents’ separation (new home, different school), their adjustment is made more difficult because their sense of order is upset. Predictable routines have changed, and children may test limits to see if they still apply. The more changes they must make in the period immediately after the divorce, the more challeng- ing is their adjustment. The disruption associated with divorce is

Figure 2–6 One effective discipline method is to remove the child to an isolated area where no interaction with children and adults can occur and no toys are present. This is used to demonstrate that there is a consequence to misbehavior. For older children, consider the loss of phone, computer, or other privileges.

AGE BEHAVIOR*

Preschool Fear, anxiety, worry Self-blame Sorrow and grief Anger Regression Searching and questioning Temper tantrums Increased crankiness and aggression Loneliness Unhappiness Depression

School age Worry, anxiety, depression Sadness Insecurity Fantasy Grief Guilt Self-blame Inability to concentrate on schoolwork Lower academic achievement Regression Aggression Confusion Anger Resentment Behavioral problems at school and home Manipulation of parents Withdrawal from friends and activities Fear Loneliness

Adolescence Panic Fear Depression Guilt Risk taking Fear of loneliness and abandonment Denial Anger Sadness Aggressiveness Skipping or dropping out of school Use of drugs and alcohol Sexual acting out

*This table lists some of the behaviors that could potentially be seen with different age groups and is not all-inclusive. Many other behaviors may be present as well, depending on the individual child.

Source: Data from Anthony, C. J., DiPerna, J. C., & Amato, P. R. (2014). Divorce, approaches to learning, and children’s academic achievement: A longitudinal analysis of mediated and moderated effects. Journal of School Psychology, 52, 249–261; Craig, G. J., & Dunn, W. L. (2013). Understanding human development (3rd ed.). Upper Saddle River, NJ: Pearson; Gross, G. (2015). The impact of divorce on children of different ages. Retrieved from http://www.huffingtonpost. com/dr-gail-gross/the-impact-of-divorce-on-children-of-different-ages_b_6820636.html; Mazjub, R. M., & Mansor, S. (2012). Perception and adjustment of adolescents towards divorce. Procedia—Social and Behavioral Sciences, 46, 3530–3534.

TABLE 2–3 Potential Effects of Divorce on Children of Different Ages

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26 Chapter 2

Families Want to Know Promoting Relationships With Parents Following Separation and Divorce Guidelines that may help reduce conflict and foster maintenance of a close relationship between the child and each parent include the following:

š� Develop a way to stay in touch with the child even when apart, such as phone calls, text messages, social media, or e-mail.

š� Encourage a liberal visitation schedule so that each parent has time to be a normal parent. Overnight stays rather than a few hours at a time allow for more normal interactions.

š� When parents have difficulty minimizing conflict in front of the child, transition the child to the other parent after school or child care, or from a friend’s home. This keeps the child from feeling responsible for the conflict.

Clinical Tip Identify the parent who can legally provide consent for medical treatment when there has been a divorce and potentially a remar- riage. In some states the noncustodial parent cannot give consent. The stepparent cannot give consent unless the custodial parent grants written permission. Stepparents or other family members may also not know the child’s medical history. Identify the legal framework for informed consent with regard to these children so that care is provided in an appropriate and responsible manner.

infants and toddlers can sense tensions in the home. Remind parents about the need to keep children out of the middle of confrontations and to maintain limits of acceptable behavior. Encourage parents to avoid saying negative statements about the other parent and encourage them to make every effort to maintain the relationship with the children. Help parents rec- ognize their child(ren)’s needs for love and security during this difficult period.

The quality of the relationship between the divorced par- ents has an important impact on the future relationships their children have with them as adults. Children do better when both parents remain involved with their children and cooperate with each other after divorce (American Academy of Child and Ado- lescent Psychiatry, 2011).

Fathers who do not live with their children but live nearby are more likely to have involvement with their children if they have a good relationship with the child’s mother, financial resources, and work experience. The relationship between father and child may be improved when the father can interact with the child in a conflict-free environment. See Families Want to Know: Promoting Relationships With Parents Following Separation and Divorce.

Stepparenting When divorced or widowed parents remarry, the child may respond with ambivalence, divided loyalty, anger, or uncertainty. Parents should anticipate how the child and the entire family will respond to changes in lifestyles, routines, and interaction patterns and address them early in the formation of the new fam- ily relationship. When a stepparent joins a ready-made family, opportunities for improved emotional and financial support of the child can result, but the development of a new cohesive fam- ily requires many adjustments by all family members.

Blending two families often results in the need to identify or negotiate new customs, traditions, rituals, and routines for the family. Children may fear or experience losses such as a close relationship with the noncustodial parent, neighborhood friends (if a move was required), contact with grandparents, and family traditions. Discussions with children about their feelings may help the new family develop plans that ease the transition.

Stepparents must adjust to the habits and personality of the child and then work to gain trust and acceptance. If the child has not accepted the divorce or loss of a biologic parent, the steppar- ent faces more challenges in developing a trusting, affectionate, and respectful relationship. Sharing in childrearing decisions and responsibilities is an important task for stepparents, but their roles and the role of the joint or noncustodial parent need to be discussed and negotiated.

Stepparents are additional parents, not replacement parents. The stepparent and the child need to adjust to each other. The

stepparent should try to establish a position in the child’s life that is different from that of the missing biologic parent, rather than competing with the biologic parent. Stepmothers often have more challenges than stepfathers adjusting to their new role. This may be because they spend more time with the children.

In most stepparent families, discipline is a challenge. Fam- ily members must agree on standards of behavior, as well as the type of discipline and who carries it out; these guidelines need to be consistently maintained. Discipline by a stepparent is diffi- cult until a bond develops between the stepparent and stepchild. The development of this bond cannot be forced. Time and honest communication are needed to gain the child’s trust.

Contact with the biologic parent often continues through custody arrangements, financial support, and visitation. Chil- dren may actually move between two households, adding to the complexity and stressors in their lives. Power conflicts may emerge if the biologic parents do not make efforts to cooperate in parenting decisions. When parents agree to work together for the child’s benefit, a parenting coalition between all parents in the two families can reduce the conflicts and tensions that can emerge.

Foster Care Foster care is the provision of protection and shelter for a child in an approved living situation away from the family of origin. It is legally coordinated by the state’s child welfare system. The goal of foster care is to ensure the safety and well-being of vulnerable children. During 2014, 265,000 children entered foster care, and 238,000 exited. As of September 30, 2014, 415,000 children were in foster care (U.S. Department of Health and Human Services, 2015).

Children enter the foster care system for many reasons. The primary reason is child abuse and neglect. Other reasons include parental problems such as abandonment, illness, alco- hol/substance abuse, incarceration, and death. Severe behavioral problems in the child can also lead to placement in foster care

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Family-Centered Care and Cultural Considerations 27

while in foster care are challenged by various barriers, such as lack of coordination between healthcare providers and social workers.

Every child entering foster care should receive an initial health screening, followed by a more comprehensive health assessment within a month. Findings and recommendations from the health assessment and additional health evaluations should be incorporated into the child’s social service case plan. Nurses can play an important role in partnering with foster parents to arrange for and obtain the services needed by the child. Foster parents need to be supported in their efforts to care for these children, helping them to develop self-esteem and resilience.

Transition to Permanent Placement Although many children are reunited with birth parents, other children cannot be. The Adoption and Safe Families Act of 1997 (P.L. 105-89) led to significant changes in child welfare and was enacted to increase well-being, safety, and permanence. Timelines were shortened for decision making about perma- nent placement of children, and incentives were established for states to encourage adoption. States were given guidelines regarding when reasonable efforts to reunite children with birth parents are no longer necessary, and when action is required in certain circumstances to terminate parental rights (Phillips & Mann, 2013). Kinship foster care was formally recognized. Legal guardianship (a permanent placement option for the child, often with relatives, in which parental rights are not ter- minated) was established as an alternative to adoption (a legal relationship between the child and parents not related by birth in which the adoptive parents assume all legal and financial responsibility for the child). Long-term foster care was elimi- nated as a permanent placement option in nonkinship care, but it could continue for kinship foster care to promote stability for the involved children (Adoption.com, 2013).

(American Academy of Child and Adolescent Psychiatry, 2013). Each state has guidelines regarding qualifications and standards for foster care parents and the process for becoming a foster parent. In an effort to ensure that the child is placed in a safe and nurturing environment, state guidelines that are used when investigating the home often include an interview with the inter- ested adults to check for readiness to be a foster parent, health of all family members, legal background checks, and safety of the residence. Foster parents are also required to have initial training and annual continuing education.

Foster parents may be relatives (kinship care) or unrelated families with whom the child has a strong emotional bond. How- ever, many children needing foster care are placed in extended families because there are fewer suitable nonkinship family fos- ter homes. Kinship placement is frequently viewed as a better alternative, providing a more stable environment for the child. When children are placed with relatives, some sense of continu- ity and connectedness is maintained for these children (Fusco & Cahalane, 2015). Kinship care is generally perceived as more nor- mative with fewer stigmas attached to it than nonkinship place- ment. Additionally, children in kinship care have been shown to have better outcomes in relation to safety, stability, and well- being (Font, 2014). Kinship providers are frequently older, in poorer health, have less income, and more likely to be single than nonkinship foster parents (Nesmith, 2015). Also, kinship foster parents receive fewer support services (Soine, 2013).

Foster Parenting Foster parenting is very demanding, as they must provide for daily needs of children as well as support them emotionally. Fos- ter parents provide transportation to medical and mental health counseling appointments, coordinate visits with birth parents and caseworkers, and advocate for the child in school settings. When the child has complex problems or needs, the challenge of caring for the foster child is even greater. Foster parents do receive some funding to care for the foster child, but it is often inadequate for the child’s needs; therefore, the foster parents sub- sidize the child’s care from their own funds. Some foster parents leave the system due to lack of adequate support. When the child must be moved to a different foster family, this may further exac- erbate the ongoing stress that the individual child experiences in the foster care system.

Much of the child’s adjustment rests with the stability of the family and available resources. Even though foster care is intended to be a temporary short placement—until the child can be returned home or an adoptive home is found—placed children may actually reside with the foster family for a lengthy time, sometimes for years. For children who have come from an environment that has been unstable, abusive, or neglectful, the foster care home can be supportive to the child’s health status, development, and academic achievement.

Foster parents caring for children need to provide continuity, consistency, and predictability. It is essential that foster parents provide a nurturing environment for these children and show love and affection toward them. Developmentally appropriate activities are also essential to foster the child’s long-term physical and emotional development.

Health Status of Foster Children Physical health problems, as well as developmental, behavioral, and emotional problems, are common in children in foster care (American Academy of Child and Adolescent Psychiatry, 2013). Efforts to ensure that children receive appropriate health care

Clinical Tip The Foster Care Independence Act of 1999 (P.L. 106-169) requires states to provide youth 18 to 21 years of age with services to help them make the transition to self-sufficiency. These services include training and education, financial support, and employment services (U.S. Department of Health and Human Services, 2012).

For those children with kinship foster care, adoption is often not perceived as the best option. Legal guardianship enables the child to retain legal connections with the birth family and rela- tionships with the extended family. The guardian assumes lim- ited financial liability for the child’s care. Legal guardianship can be reversed at a future time if the birth parents petition the court.

Adoption Motivations for adoption of a child vary with the families seeking adoption. In some cases, couples have infertility problems and are unable to have a biologic child. In a family that already has biologic children, the reasons could include the following:

š� A desire to provide a home to a child who needs one or to have a larger family without additional biologic children

š� Fertility issues requiring invasive medical procedures that are too extensive, expensive, or psychologically overwhelm- ing for a subsequent pregnancy

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28 Chapter 2

about parenting and the adoptive process, as well as make con- nections with support groups or other families with adopted chil- dren. Preadoptive parents may wonder about their ability to love and parent the child and may have concerns about the responses of relatives, other children, and friends, especially if the child is from a different ethnic or racial group. Children already present in the family need to be reassured that they will not be displaced by the new child. Families need information about the child’s understanding of what adoption means and guidance to help inform the child about being adopted.

Responses by Adopted Children Children vary in their understanding and response to adoption by age (Jones et al., 2012):

š� Children under 3 years of age do not recognize a difference between being adopted into a family versus being a biologic child in the family.

š� Starting at about 3 years of age, children like to hear about their adoption story and they begin to ask what adoption means. Children adopted at this age may experience the separation from their other family and relatives. They are aware of physical differences between themselves and the adoptive family when they are of a different race or ethnic group. They may be fearful of abandonment by the adop- tive family.

š� By 5 years of age, adopted children begin to recognize they are different from most of their peers who were not adopted. Some children develop a feeling of responsibility for their biologic parents’ decision not to keep them.

š� School-age children may fantasize about their biologic fam- ily and what their life might have been like if they were not adopted. Their self-esteem may be affected if they think there was a flaw in them that caused their biologic parents to give them up for adoption.

š� Adolescents may continue to fantasize about the “ideal” biologic family and try out identities similar to what they know or imagine about their biologic parents. They may also become angry that their own life experience is different from societal norms. Adolescents and young adults may seek information about their biologic family through a reunion registry. See Families Want to Know: Informing the Child About Adoption.

š� Adoption of a foster child with whom the family has estab- lished strong bonds

š� Adoption by a family relative or stepparent

The supply of healthy infants available for adoption is much smaller than the number of families who want to adopt. Most children in the United States available for adoption are older children, often of minority populations or of mixed races, and those with special healthcare needs. In 2012, the number of chil- dren waiting to be adopted was 102,000. This number increased to 108,000 in 2014 (U.S. Department of Health and Human Ser- vices, 2015). Because most families choosing to adopt prefer to have an infant, many children have been adopted from foreign nations. Today, adopted children account for approximately 2% of all children in the United States (Jones, Schulte, & Committee on Early Childhood and Council on Foster Care, Adoption, and Kinship Care, 2012).

Legal Aspects of Adoption Adoption is controlled by individual state law. Most adoptions are arranged through an authorized agency, such as a licensed social service agency. Others are provided by independent agen- cies in collaboration with physicians, lawyers, nurses, and mem- bers of the clergy. State laws require any family who wants to adopt a child to undergo a home study, a process in which par- ents are interviewed about a large number of topics and issues and are provided education and guidelines to prepare for the adoption. The National Adoption Information Clearinghouse provides information about state adoption laws.

Birth mothers and birth fathers are each required to relin- quish legal rights to a child before an adoption can occur. The legal period between the child’s birth and when the birth mother relinquishes legal rights varies by state. Efforts are made to ensure that the birth mother is not coerced into relinquishing legal rights to the child immediately after birth. In an open adoption, the birth mother and adoptive parents often have contact with each other prior to the birth and have jointly planned potential future contacts between the child and biologic mother. In some adop- tions, birth mothers write a letter to the child that is given to the child at an appropriate age.

Preparation for Adoption Adopting parents often benefit from preadoption counseling, which may help provide the support and reassurance needed

Families Want to Know Informing the Child About Adoption Most parents have anxiety about when and how to tell the child that he or she was adopted. There is no perfect age to approach this topic, so consider the child’s age and developmental stage when sharing information.

š� Some authorities believe the child should be told at such a young age that the child will always know that he or she is adopted. This may be especially important when the child is of a different ethnic or racial group or has very different physi- cal characteristics than the parents.

š� The terms adoption, adopted, birth family, or biologic family should be part of the family’s natural conversation (Jones et al., 2012).

š� Decide when you and the child are most ready to introduce the topic of adoption—such as when a discussion of babies and where they come from occurs. However, avoid waiting for “just the right moment” because children may wonder what other information has not yet been shared.

š� Make sure the child is told before a third party is likely to say something. The chances of this happening increase as the child enters school.

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Family-Centered Care and Cultural Considerations 29

of family theories provides a context about family functioning that can assist with planning nursing care and developing future partnerships with families and their children.

Each family has structure and functions to help it maintain stability while responding continuously to various stresses and strains within the family and in the family’s interactions and functioning within the community. Families develop and modify their responses and functioning over time to adapt or be toler- ant of family, community, and environmental changes. Family processes include the behaviors and strategies that help regulate space, time, energy, and other aspects of family functioning to promote family stability, growth, and control.

Family Development Theory Family development theories use a framework to categorize a family’s progression over time according to specific, typical stages in family life. These are predictable stages in the life cycle

Children who are older when adopted must also make the commitment to the family relationship. They often have a memory of parents and other caregivers, so developing a close relationship with the adoptive parents takes more time. It may also be more challenging for the adoptive parents to develop as strong an emotional bond to the older child as occurs when an infant is adopted. Even when a serious commitment has been made to adopt an older child, adjustment of the family and child may be difficult for everyone. Counseling may be helpful to some families during the transition process.

International Adoptions International adoption is relatively common in the United States. Often, internationally adopted children need special healthcare services. Nurses work with families that have adopted children from other countries to provide a comprehensive evaluation of the child to detect potential developmental problems and health conditions as soon as the child is brought into the country.

Emotional and psychologic problems may be the result of long-term institutionalization in an orphanage, such as incon- sistency in interpersonal development and delayed develop- mental milestones. The child and family may need counseling and support to help the child adjust to being part of a family. For the child who has been in an orphanage, his or her initial response to the new parents may be crying or turning away. Children need a transition period of several months to adjust to a different daily routine and to bond with the parents. Expos- ing the child to large numbers of family members or to busy environments may be stressful to the child. The nurse may become involved in providing counseling to the family when it is trying to integrate the adopted child into the family’s life and routine (see Figure 2–7). As the child grows, efforts to help the child understand the cultural birth heritage are also important. See Chapter 4 for additional information about international adoption.

Family Theories Families must be understood in their own context. It is impor- tant, for example, to understand each family’s strengths and uniqueness and how the family and its members respond to the complex and often conflicting demands for time and attention.

Family theories are helpful in comprehending family func- tioning, environment–family interchange, family changes over time, and family response to health and illness. A brief review

š� Tell the child in a matter-of-fact manner about the adoption. Let the child know how much he or she was wanted and that some personal qualities of the child made the selection special. Avoid phrases such as “given up” for adoption. A more positive phrase to use is that the biologic family made an adoption plan in the best interest of the child’s future.

š� Make sure the child understands that his or her place in the family is permanent. The adoptive family’s commitment to the child should be repeated frequently.

š� Be willing to honestly discuss the child’s biologic family and the adoption process so the child feels comfortable asking questions. More discussion about adoption will be needed as the child grows older, especially when the child begins to ask at about 5 to 6 years of age why she or he was not wanted by the biologic parents. Anticipate that the child will grieve about the loss of the birth parents.

š� As the child grows older and asks for more information about the birth parents, provide what information is known and try to help the child deal with information that is difficult to hear. Help the child decide what information to share with stran- gers, friends, and extended family members.

š� Recognize that the adolescent may fantasize about the birth parents and want to find them. Listening to the adolescent’s concerns and providing support during this challenging time of development is important.

Figure 2–7 Adopted children who are of mixed race or a different ethnic group than the parents may cause a few additional challenges for the adoptive parents. Family members may be less supportive of the adoption initially. Because the children may have different physical characteristics, the family may capture more attention than it wishes. The family needs to learn to appreciate the different cultures represented in the newly formed family.

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30 Chapter 2

in the family, any change or stressor experienced by one or more family members affects the entire family and causes disrup- tion. Families are adaptable and can change interactions and behaviors associated with the disruption in response to positive feedback.

From a systems perspective, the family may or may not exchange materials, energy, and information with its physical, social, and cultural environments. An open family seeks informa- tion and resources and actively interacts with the community to solve problems. A closed family views change and offered support as a threat, and resistance to outside influences is a strategy the family uses to maintain control. These attributes have an effect on the capacity of the family to adapt—to modify behavior and change as the situation demands (Clark, 2015; Kaakinen & Han- son, 2015).

Family systems theory encourages nurses to see the child and parents as participating members of a whole family (Kaaki- nen & Hanson, 2015). It encourages looking at the processes within the family and the relationships between subsystems (spouse, parent–child, and siblings) and suprasystems (the com- munity within which it is embedded). Stress and crises moti- vate the family to mobilize its resources and to begin problem solving.

Using this perspective, the nurse can assess the effects of illness or injury on the entire family system and the reciprocal effects of the family on the illness or injury. Assessing how open or closed the family is to information and resources is important in planning nursing care. Open families will be more receptive to referrals and interventions from health professionals. The nurse will need to work with the closed family to establish trust and acceptance before the family is receptive to ideas and interven- tions proposed.

Family Stress Theory Family stress theory focuses on the family’s ability to cope and adjust to stressful events, such as having a child with a signifi- cant health condition (Ramisch, 2012). Most families know their resources and have developed coping strategies to deal with daily routine stressors (e.g., completion of household chores, homework). Family stressors may pile up from many sources, such as work demands, school issues, extended family demands, the desire to achieve quality family time, and community roles. Additional stressors may include inadequate finances, healthcare concerns, and relationship challenges.

Nonroutine stressors (such as surgery or the birth of a child) and unexpected events (a child’s sudden illness or injury) are often more stressful because the family has not had time to review resources and prepare a response. A child’s illness or injury affects every member of the family. Family members respond to this stress, sometimes in a way that changes inter- actions among family members and with the environment. By identifying how families respond to the stress of a child’s illness or injury, nurses can provide support that may reduce the impact on the entire family.

No one theory is sufficient for viewing the needs and behaviors of all families. The theories previously described herein continue to evolve as researchers identify new or broad- ened explanations for behaviors, so it is difficult to attach one specific theorist to each family theory. When assessing fami- lies, you may find it useful to consider more than one of these theories to help you understand the full set of behaviors asso- ciated with individual families and to plan effective nursing interventions.

of every family, but they follow no rigid pattern. Duvall’s (1977) eight stages in the family life cycle of a traditional nuclear family have been used as the foundation for contemporary models of the family life cycle that describe the developmental processes and role expectations for different family types. Table 2–4 lists the eight stages of Duvall’s family life cycle to illustrate impor- tant developmental transitions that occur at some point in most families.

Other family development models have been developed to address the stages and developmental tasks facing the unattached young adult, the gay and lesbian family, those who divorce, and those who remarry. Textbooks on families and developmental psychology provide further information on this topic.

Nurses can assess families by their developmental stage, how well they are fulfilling the tasks of that stage, and the avail- ability of resources to accomplish developmental tasks. The stages provide a method for anticipating transitions and potential stressors with family role changes that occur at different points along the developmental continuum for different family types. By understanding the family’s developmental stage, the nurse can analyze the family growth and health promotion needs and identify developmental transitions and potential stressors. This enables the nurse to identify the types of teaching and anticipa- tory guidance that might be needed.

Family Systems Theory Family systems theory focuses on the family as an “organized whole and/or as individuals within family units who form an interactive and interdependent system” (Kaakinen & Hanson, 2015, p. 76). A family is a living social system, consisting of a small group of individuals who are closely interrelated and inter- dependent while collaborating to attain family functions and goals. In short, the family is more than the sum of its members (Clark, 2015; Kaakinen & Hanson, 2015). In family systems the- ory, due to the amount of interrelationship and interdependence

STAGES CHARACTERISTICS

Stage I Beginning family, newly married couples*

Stage II Childbearing family (oldest child is an infant through 30 months of age)

Stage III Families with preschool children (oldest child is between 2.5 and 6 years of age)

Stage IV Families with school-age children (oldest child is between 6 and 13 years of age)

Stage V Families with teenagers (oldest child is between 13 and 20 years of age)

Stage VI Families launching young adults (all children leave home)

Stage VII Middle-aged parents (empty nest through retirement)

Stage VIII Family in retirement and old age (retirement to death of both spouses)

*Keep in mind that this was the norm at the time the model was developed, but today families form through many different types of relationships.

Source: Adapted from Duvall, E. M. (1977). Marriage and family development (5th ed.). Philadelphia, PA: Lippincott; Duvall, E. M., & Miller, B. C. (1985). Marriage and family development (6th ed.). New York, NY: Harper Row; Coehlo, D. P. (2015). Family child health nursing. In J. R. Kaakinen, D. P. Coehlo, R. Steele, A. Tabacco, & S. M. H. Hanson, Family health care nursing: Theory, practice, and research (5th ed., pp. 387–432). Philadelphia, PA: F. A. Davis

TABLE 2–4 Eight-Stage Family Life Cycle

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Family-Centered Care and Cultural Considerations 31

Functional families use their strengths and a variety of cop- ing strategies to successfully reduce stress. Coping strategies of dysfunctional families are generally defensive (e.g., denial of family problems, exploiting a family member, use of threats or withdrawal of affection and support, dominance and submissive patterns, and family substance abuse).

After developing a rapport and relationship with the family, the nurse can help families identify their strengths and areas for improvement that can lead to increased resilience. Focus on fam- ily competence and acknowledge and validate family members’ emotions. Help families recognize that strengths and strategies used in prior life experiences may transfer to the current health- care experience. When family members recognize the strengths they bring to the management of their child’s healthcare problem, the family is more likely to become an effective partner in the process.

Collecting Data for Family Assessment Establish a trusting relationship with the child and family to obtain an accurate and concise family assessment. Identify the primary concerns of the parent(s) and child, noting that they may be different. Acknowledge these multiple concerns and demon- strate respect for the diversity of the family. The goal is to obtain family information to plan nursing interventions that help the family care for the child and improve the child’s outcomes while valuing each family member.

Information about the family is collected continuously dur- ing the healthcare process, through interviews, observations of family interactions, reports from other healthcare providers or agencies working with the family, and with a family assess- ment tool.

Additional data for the family assessment include the psychosocial history and daily living patterns (see Chapter 5). Observation of the home and family members is recommended in some cases to obtain valuable information about family functioning.

Family Assessment To identify strategies for coping (the use of learned behavioral and cognitive strategies to manage or relieve perceived stress), nurses must be able to assess family strengths and support mech- anisms and to determine when families have overextended their resources and need additional support. In some cases, nurses can provide the additional support needed. At other times, referral to other health professionals is appropriate to address the fam- ily’s needs.

Children and families live within a variety of settings and interact with those settings in ways that directly or indirectly influence behaviors and learning. Because of these environ- mental influences on the family, it is important to consider the relationship of the family with the social networks within the community.

Family Stressors A child’s illness or injury affects every member of the family. Such a stressor demands a response from the family members that can change the way they interact with each other and with other people. Nurses need to identify and assess how families respond to the stress of illness or injury of a child or other family members because of the potential hardships it causes the entire family.

Family Strengths Family strengths are the relationships, processes, and resources that families can use during times of adversity and change to manage stressors. Nurses can support families by helping them identify and use these strengths to manage the stressors asso- ciated with family challenges or crises. Strengths that enable families to develop and adapt to stressors include (Lester et al., 2013):

š� Resources such as education, prior experiences, and finances

š� Effective communication and collaborative problem solving š� Being emotionally aware and working to maintain emo-

tional stability š� Developing shared meaning about the experience

Identify a family’s resilience—the family’s capacity to develop strengths and abilities to “bounce back” from stress and challenges. Resilience is often a dynamic interaction between protective processes (strengths and capacities) and vulnerabilities, such as life-event stressors, health status, or environmental risks (Herrman, Stewart, Diaz-Granados, et al., 2011). When a family can control and deal with events satisfac- torily, its members gain a sense of competence, making them more resilient, in contrast to families who are overwhelmed by traumatic experiences. Resilience of children is discussed in Chapter 17.

Most families have the capacity to develop resilience. Nurs- ing support may be needed to help family members learn new skills, make adaptations, and gain confidence in their abilities to manage the challenges of the child’s health condition. Poten- tial resources to foster resilience include the faith community, finances, social support, physical health, family flexibility, and family coping mechanisms. Families with fewer resources will be more susceptible to disruption when a healthcare crisis or event occurs.

Clinical Tip Family strengths helpful in managing stressors include the following: š� Communication skills: The ability of family members to listen,

gather information, and discuss their concerns in an honest and open manner

š� Shared family values and beliefs: The family’s common perceptions of reality and willingness to have hope and to appreciate that change is possible; family celebrations; family traditions

š� Intrafamily support: The provision of support and reinforcement by extended family members to promote family cohesion and an atmosphere of belonging; family time and routines

š� Self-care abilities: The family’s ability to take responsibil- ity for health problems and the demonstrated willingness of individual members to take good care of themselves

š� Problem-solving skills: The family’s use of negotiation in problem solving, using daily and prior life experiences as resources, and focusing on the present rather than past events or disappoint- ments; effective utilization of healthcare resources

š� Community linkages: Maintenance of active linkages with the community; reaching out to others in the social network including extended family and friends

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32 Chapter 2

CALGARY FAMILY ASSESSMENT MODEL Developed by Lorraine Wright and Maureen Leahey (2013), the Calgary Family Assessment Model uses three categories of information (structural, developmental, and functional family data) to assess a family’s strengths and problems. The com- plete model is available in their textbook, Nurses and Families: A Guide to Family Assessment and Intervention. The model enables collection of extensive family information, and it can facilitate

Family Assessment Tools Family assessment tools help in gathering information about the family’s functioning. Some tools specifically focus on family strengths, coping strategies, and family stresses. Learning about how the family nurtures its members, solves problems, and com- municates may help identify strategies that can be effective for managing the child’s health care. The nurse may learn how to work more effectively with the family, such as by collaborating with the family in planning for health maintenance and health promotion strategies.

GENOGRAM Information about family structure can be illustrated on a genogram (a pedigree that displays information about a family’s health history over at least three generations). (See Chapter 3 for examples of pedigrees.) Additional identifying features such as social class, occupation, place of residence, faith, and ethnicity may be added for the family assessment process.

FAMILY ECOMAP An ecomap is an illustration of a family’s relationships and social networks that may be prepared by nurses in partnership with family members. The nurse may learn information about how the family perceives or receives social support and the strength of family relationships with significant other persons and orga- nizations. Community resources being used by the family and other potential community resources that may help promote the family’s health may be identified. Figure 2–8 shows a sample ecomap.

Figure 2–8 An ecomap illustrates the family’s relationships and interactions with groups and individuals in the immediate external environment.

Basketball Team

Father

Soccer Team School

Mother’s Work

Tenuous Relationship Strong Relationship Weak Relationship Conflictual/Stressful Relationship Reciprocal Relationship

Family or

Household

Stepfather’s Work

Stepfather’s Club

Kiwanis

Several Close

Friends

Mother’s Sister RN

Maternal Grandparents

Daily Calls

Church

Casey

Ecomap of Casey’s Family

Clinical Tip Family assessment data that may be helpful include: š� Name, age, gender, and family relationship of all people

residing in the household š� Family type, structure, roles, and values š� Cultural associations, including cultural norms and customs

related to childrearing and infant feeding š� Faith-based group participation š� Support systems network, including extended family,

friends, faith-based affiliations, and community associations

š� Communication patterns, including language barriers š� Environmental data—place of residence, housing condition,

number of persons living in the residence, sleeping arrange- ments, play areas, neighborhood characteristics

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Family-Centered Care and Cultural Considerations 33

groups, each individual’s manifestation of his or her own cultural background will be unique. Culture evolves and adapts as new members are born into or join the group and as the surrounding social and physical environments change. For example, as first-generation immigrants enter a new country, they generally closely follow the cultural pat- terns of their native lands. As their children grow, the youth maintain some of the family cultural patterns but begin to incorporate some of the new culture (Figure 2–9).

š� Culture is integrated into life and uses symbols. It is inte- grated through social institutions such as schools, houses of worship, friendships, families, and occupations. This provides a variety of opportunities for learning about one’s culture. The sense of integration may be disrupted or harder to maintain if individuals move frequently and as cultures intertwine with each other. Symbols are an important way that many cultures communicate with each other and with the outside world. Language, dress, music, tools, and non- verbal gestures are symbols a culture uses to display and transmit the culture.

Race refers to a group of people who share biologic simi- larities such as skin color, bone structure, and genetic traits. Examples of races include White (sometimes called Caucasian or European American), Black (sometimes called African American in the United States), Hispanic, Natives (such as Native Ameri- cans, Alaskan Native, Hawaiian Native, and First Nation people of Canada), and Asian.

Ethnicity describes a “cultural group’s sense of identifica- tion associated with the group’s common social and cultural heri- tage” (Spector, 2013, p. 357). Examples of ethnic groups include Hmong, Jews, and Irish Americans. Even the mainstream or majority of groups usually identify with an ethnic group. Some beliefs and practices are common among certain ethnic groups, but it is important to avoid stereotyping individuals—that is, assuming that all members of a group have the same character- istics. The nurse should assess the woman or child and family to see which characteristics common to a group are possessed by

assessment of family challenges, such as problems integrating a treatment plan in family routines. A family genogram or eco- map may also be helpful in completing the assessment (Wright & Leahey, 2013).

HOME OBSERVATION FOR MEASUREMENT OF THE ENVIRONMENT (HOME) The HOME Inventory is an assessment tool developed to mea- sure the quality and quantity of stimulation and support avail- able to a child in the home environment (Caldwell & Bradley, 1984). The tool is used to identify relationships between the home environment, child care, and a child’s development (Hack- man et al., 2013; Sarsour et al., 2011). Four age-specific scales are available (birth to 3 years, 3 to 6 years, 6 to 10 years, and 10 to 15 years). Examples of subscales contained in each age-specific HOME Inventory include parental responsivity, acceptance of child, the physical environment, learning materials, variety in experience, and parental involvement. Data are collected during an informal, low-stress interview and observation over 45 to 90 minutes in the home setting. The child’s pri- mary caregiver and the child must be present and awake so their interaction can be observed. Family members are encouraged to act normally. Assessment of the home environment may help identify nursing interventions that promote the child’s growth and development, such as items in the home that can be used for toys and strategies for parent interaction with the child to promote learning.

Cultural Considerations When caring for families, it is critical to consider the influence of culture, which may affect how a family responds to health- related issues. Culture has many definitions and is currently described as

the combination of a body of knowledge, a body of belief, and a body of behavior. It involves a number of elements, including personal identification, language, thoughts, com- munications, actions, customs, beliefs, values, and insti- tutions that are often specific to ethnic, racial, religious, geographic, or social groups. (U.S. Department of Health and Human Services, National Institutes of Health, 2013)

Culture is characterized by certain key elements, including the following:

š� Culture is based on shared values and beliefs. Expected behaviors and roles emerge that are consistent with those values and beliefs. A belief system suggests what preven- tive health measures and treatment for diseases are sought and accepted. It may also state the importance of children, the family, other individuals, and the collective group, all of which can influence the choices people in the culture make regarding health.

š� Culture is learned and dynamic. A child is born into a culture and starts learning the beliefs and practices of the group from birth. Children who are members of two cul- tural groups, such as African and immigrant, learn about both groups as they grow and develop. Immigrants have moved from one country to another to live and may face challenges when integrating the rules of the dominant culture. Children who have family members from two or more cultural groups integrate parts of the worldview from each group. Therefore, although culture is connected with

Figure 2–9 Today very few communities are limited to one culture. The children in this multicultural choir are representative of the changes in demographics of many Western countries. Even though they may differ in cultural background, a common thread is found in their religious preference. SOURCE: Myrleen Pearson/PhotoEdit.

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34 Chapter 2

the other hand, health sometimes declines with acculturation. For example, obesity is a problem that is growing rapidly within the United States and particularly among immigrant populations.

Cultural Assessment In addition to the family assessment tools referred to earlier in this chapter, there are several tools (see Table 2–5) that can be used for cultural assessment of the family. Nurses must also con- sider contexts, such as the person’s family, culture, work, com- munity, history, and environment. The person must be in a state of balance within all personal and contextual parts. Illness occurs as a result of imbalance of one or all parts of the person (mind, body, spirit).

the patient rather than assume that because individuals iden- tify themselves as a specific ethnicity they must practice certain customs.

Acculturation refers to the process of modifying one’s cul- ture to fit within the new or dominant culture. Assimilation is related to acculturation and is described as adopting and incor- porating traits of the new culture within one’s practice (Spec- tor, 2013). Acculturation frequently occurs when people leave their country of origin and immigrate to a new country. Often, acculturation is associated with improved health status and health behaviors, especially if the immigration is associated with improved socioeconomic status, which leads to better nutrition and access to health care. This is frequently true for people who immigrate to the United States from a developing country. On

THEORIST MODEL DESCRIPTION COMPONENTS/CONCEPTS

Dr. Madeleine Leininger

Sunrise Enabler This guide can be used to examine a variety of influences on care and culture.

š� Cultural values and lifeways š� Political and legal factors š� Economic factors š� Educational factors š� Kinship and social factors š� Religious and philosophical factors š� Technological factors (McFarland & Wehbe-Alamah,

2015, p. 25)

Dr. Larry Purnell Model for Cultural Competence

Twelve major concepts are common to all cultures and can be assessed to provide important information about an individual family or group (Purnell, 2013).

š� Overview, inhabited localities, and topography š� Communication š� Family roles and organization š� Workforce issues š� Biocultural ecology š� High-risk behaviors š� Nutrition š� Pregnancy and childbearing practices š� Death rituals š� Spirituality š� Healthcare practices š� Healthcare providers (Purnell, 2013, p. 18)

Dr. Joyce Newman Giger and Dr. Ruth Davidhizar

Transcultural Assessment Model

The client is the center of care and culturally unique. Knowl- edge of the cultural heritage, beliefs, attitudes, and behaviors of the client is required to pro- vide culturally competent care. This model is based on six phenomena that nurses must assess.

š� Communication š� Space š� Social organization š� Time š� Environmental control š� Biologic variations (Giger & Davidhizar, 2013, p. 5)

Dr. Rachel Spector HEALTH Traditions Model

This model is predicated on the concept of holistic health and describes practices that can be used to maintain, protect, and restore health. Health is a com- plex, interrelated, and balanced state of the physical, mental, and spiritual.

š� Physical—all physical aspects, such as anatomic organs, gender, age, nutrition, genetic inheritance, body chemistry, and physical condition

š� Mental—cognitive processes, such as memories, thoughts, and knowledge of such emotional pro- cesses as feelings, self-esteem, and defenses

š� Spiritual—both positive and negative learned spiri- tual practices and teachings, dreams, stories, and symbols; protecting forces; and metaphysical or innate forces (Spector, 2013, p. 91)

Sources: Data from Giger, J. N., & Davidhizar, R. E. (2013). Transcultural nursing: Assessment & intervention (6th ed.). St. Louis, MO: Mosby Elsevier; McFarland, M. R., & Wehbe-Alamah, H. B. (2015). The theory of culture care diversity and universality. In M. R. McFarland & H. B. Weheb-Alamah (Eds.), Leininger’s culture care diversity and universality: A worldwide nursing theory (3rd ed., pp. 1–34). Burlington, MA: Jones and Bartlett; Purnell, L. D. (2013). Transcultural health care: A culturally competent approach (4th ed.). Philadelphia, PA: F. A. Davis; Spector, R. E. (2013). Cultural diversity in health and illness (8th ed.). Upper Saddle River, NJ: Pearson.

TABLE 2–5 Cultural Assessment Models

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Family-Centered Care and Cultural Considerations 35

Cultural Practices That Influence Health Care FAMILY ROLES AND ORGANIZATION A family’s organization and the roles played by individual family members are largely dependent on cultural influence. For exam- ple, culture may determine who has authority (head of house- hold) and is the primary decision maker for other members of the family. Nurses should be alert for roles and functions in families. Teaching may need to be directed to those responsible for deci- sion making in order to effectively promote the child’s health.

Culture also defines gender roles and the roles of the elderly and of extended family. In some cultures, major decisions for the family, including a child’s health care, involve input from grandparents and other extended family members (Figure 2–10). Grandparents may even assume responsibility for care of the children in the family. In these cases, nurses must direct teach- ing for health promotion and demonstration for treatment pro- cedures to the grandparent.

Family goals are also determined by cultural values and practices, as are family member roles and childrearing practices and beliefs. In some families, children are expected to take on responsibilities early and may be expected to perform tasks such as management of their own chronic disease and nutritional intake. In other families, children are given long periods to grow up and are not expected to manage healthcare needs. Examples

Figure 2–10 Many cultures value the input of grandparents and other elders in the family or group. For example, in this multigenerational family, the grandmother’s guidance is highly valued and significantly influences the family’s childrearing practices. SOURCE: Wong yu liang/Fotolia

CULTURE CHILDREARING PRACTICES

African American Grandmothers play an important role in the care of children. Children are expected to demonstrate respectfulness, conformity to rules, obedience, and good behavior. Extended family is very important.

Amish The family contains, on average, seven children. Childrearing is regarded as the highest priority for parents. Grandparents often provide care to children. Children are expected to continue with the Amish tradition. Children are expected to follow the rules as prescribed by the church district.

Appalachian Large families are common. Strict parenting practices and physical punishment are common. Grandparents frequently provide care to children.

Arab American The father is typically the disciplinarian. The child’s character is considered a reflection of the family’s influence. Children are expected to respect their elders and to have good behavior. Adolescents are expected to do well in their studies. Discipline may include physical punishment and shaming.

Chinese American The family may lavish resources on the child. Children typically depend on family for all needs and may not be expected to earn their own money as adolescents. Male children are often more valued than female children. Children may be taught to avoid displaying their emotions/feelings. Children are expected to assist parents in the home (chores). High educational achievement is expected.

Mexican American Children are closely protected and are not encouraged to leave the home. Extended family members frequently live close by. Children are expected to demonstrate respect for parents and elderly family members. Discipline may include physical punishment. Education is a priority.

Navajo Indian Large families are important. Grandmothers are important decision makers in the family. Children are encouraged to make decisions and live and learn from those decisions. Children are taught to respect their elders and be respectful of traditions.

Sources: Data from Purnell, L. D. (2013). Transcultural health care: A culturally competent approach (4th ed.). Philadelphia, PA: F. A. Davis; Purnell, L. D. (2014). Guide to culturally competent health care (3rd ed.). Philadelphia, PA: F. A. Davis

TABLE 2–6 Childrearing Practices of Selected Cultures

of childrearing practices common to particular cultures are listed in Table 2–6. Realize that the practices listed are common in these cultures but not necessarily practiced by all members of that culture.

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36 Chapter 2

the past, those events that occur in the present, or those events that will occur in the future. Children reflect the time orientation of their families and the cultures in which they live. Time is also influenced by development so that young children sometimes do not understand the use of clocks, the importance ascribed to being “on time,” or other time orientations.

Cultures that are oriented predominantly to the past may want to begin healthcare encounters with lengthy descriptions of past healthcare treatments, family history of diseases, or indi- vidual past experiences with health. There may be little interest in learning methods of adapting to or maintaining a new plan of care.

For cultures that are oriented predominantly to the pres- ent, little consideration may be given to either the past or the future. For example, adolescents commonly focus on the present and may not engage in preventive health practices for long-term health. Therefore, short-term goals often provide more incentive to adolescents.

Cultures that are oriented predominantly to the future, such as European American, may not focus on what is important at the present time. For example, the family focusing on the future may focus on the dreams they had for a child’s education or sports performance and have trouble setting present goals for treatment of a disease such as juvenile arthritis. One commonly hears that it was a big adjustment to learn to “take one day at a time.” Not living up to the family’s expectation for his or her future success may be difficult for a child who has developed an illness that has a chronic course.

Time also refers to punctuality about schedules and appoint- ments. In the United States, the predominant culture respects being on time and considers time valuable and not to be wasted. Other cultures may not emphasize a concern for time. This may be manifested by a family’s inability to follow timed medica- tion schedules or treatments or to show up as scheduled for an appointment. In these cases it is not intended as a sign of disrespect.

NUTRITION Nutritional practices begin even before birth, as many cultural groups have beliefs that determine foods that are healthy to eat or should be avoided during pregnancy. Nutritional habits and patterns vary among cultures and are related to both religious practices and health beliefs. Certain cultures and religions have restrictions on or prescriptions about specific foods and prep- aration methods. Ritualistic behaviors involving eating and drinking—for example, on special occasions and holidays—are observed by most cultures. Many religions recommend fasts dur- ing specific holy seasons, such as Lent for Roman Catholics, Yom Kippur for Jews, and Ramadan for Muslims; however, in most cases, small children, pregnant women, the elderly, and sick indi- viduals are not required to fast.

Additionally, some cultures value large size or may associate a healthy child with being “large.” Other cultures value slim- ness and look down on individuals who are obese. Both of these views influence family eating patterns and expectations for the child; the child’s self-esteem can therefore be influenced. The U.S. culture honors being slim in the media but reinforces eating and large size by the availability of fast food and positive image of large sports stars such as some football players, which can result in confusion about health and body image.

Nutrition may also be essential to the culture’s practices for health promotion and care during illness. Health problems asso- ciated with specific cultures that may require dietary changes are also identified. Nutrition can be closely related to environ- mental situations, and families with few resources may not be

COMMUNICATION Communication is the method by which members of cultural groups share information and preserve their beliefs, values, norms, and practices. Information is transmitted through both verbal and nonverbal methods. Verbal communication consists of spoken or written words, including tone and level of voice, language, verbal style and dialect, and written material.

Obviously, verbal communication is improved when a healthcare provider speaks the same language as the patient and family. Children are most likely to speak both the language of the parents and the healthcare providers and may appear to be likely interpreters. However, it is recommended that children never be used to interpret in healthcare situations due to the con- fidentiality needs of both parent and child. Additionally, if chil- dren are used as interpreters, it can create an imbalance in power that could adversely affect parental authority. Signs, posted lit- erature, and brochures should be available in the languages of the children and families served. Even when children speak the language of the healthcare providers, written material must be provided at a level that the family can read and understand.

Language can also affect health literacy skills, as a large number of instructions are given in writing, including pre- scriptions and directions on medication bottles, signs hanging in health facilities, consent forms for procedures and surgery, insurance forms, directions for techniques or procedures, future appointment dates, and health promotion materials. Verify what the child and family can read and whether alternative methods should be used. Nurses can verbally give the information and provide paper and pencil so the family can take notes in their own language. Translation services should be available in all healthcare settings, including the pharmacy, the appointment desk, and for phone calls, to ensure access to services for all chil- dren and families served.

Clinical Tip Speaking and reading may not occur in the same language. For example, an immigrant may read and speak fluently in a primary language and speak but not read the language of the new coun- try. The immigrant’s child may read and speak the language of the present country and speak but not read the native language of the family. Always ask about both reading and speaking preferences.

Nonverbal communication refers to body language such as posture, gestures, facial expressions, eye contact, and touch, as well as the use of silence. The nurse’s use of nonverbal commu- nication may hinder or help communication. Gestures and body language may be misunderstood or misinterpreted. For example, eye contact has different meanings among cultures. Silence is con- sidered a sign of respect in some cultures. Watch for patterns in various cultures and alter your approach to be more congruent.

Touch is another form of nonverbal communication. The appropriateness of touch varies by culture. Adults commonly feel that it is acceptable to touch children of all ages, but this may not be accurate. Watch for responses from the child and family. Nurses must touch children to weigh them, take blood pressures, and give immunizations, but this does not mean that close touch is appropriate at all times.

TIME ORIENTATION Cultures have specific values and meanings regarding time ori- entation. Cultural groups may place emphasis on the events of

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Family-Centered Care and Cultural Considerations 37

able to obtain or eat cultural foods due to access or financial issues. Nutrition plays a powerful role in maintaining health, so resources for nutritious and desired foods may be needed.

HEALTH BELIEFS, APPROACHES, AND PRACTICES The family members’ health beliefs influence their approaches and practices regarding health and illness. The young child has a view of health and illness connected with developmental under- standing and gradually takes on the family’s cultural view while growing older. Additionally, some families, when faced with a life-threatening illness of their child, may seek alternative health practices that are not considered part of their cultural heritage. This is especially true if the family becomes frustrated with traditional biomedical treatments that are unable to cure their child. See Table 2–7 for examples of health practices common to specific cultures. Nurses and other healthcare professionals should learn about the family’s belief system and integrate all types of care that the family wishes as long as there is no danger to the child.

CULTURE HEALTH PRACTICES

African American Religious healing (laying on hands) Talismans (amulets or lucky charms) Herbal remedies/oils Use of healers: “Old woman” healers Voodoo healers Shamans Spiritualists Root doctors

Asian American Acupuncture/acupressure Coin rubbing Cupping Herbs Hot and cold foods Massage Meditation Moxibustion (heat therapy) Qigong (combines meditation, movement,

and regulation of breathing) Restoring energy between yin and yang Tai chi Tiger balm Use of healers: Physicians Herbalists Acupuncturists

European American

Amulets Healing rituals Dietary modifications Exercise Traditional medicine Use of healers: Traditional healthcare providers: physi-

cians, nurses, and nurse practitioners

Hispanic or Latin American

Hot and cold foods Herbs Massage Prayers Religious medals Use of healers: Curanderos/curanderas Yerberos or jerberos (herbalists) Brujos/brujas (witches) Espiritistas (spiritualists) Sobadores

Native American Ceremony Counseling Herbs and plants Healing touch/acupressure Medicine bundle Singing Pipe ceremony Drumming and chanting (prayer) Smudging Sun dance Sweat lodge (purification ceremony) Vision quest (a powerful ceremony) Use of healers: Medicine men or women Shamans

Source: Data from Andrews, M. M., & Boyle, J. S. (2012). Transcultural concepts in nursing care (6th ed.). Philadelphia, PA: Lippincott Williams & Wilkins; Fontaine, K. L. (2015). Complementary and alternative therapies for nursing practice (4th ed.). Upper Saddle River, NJ: Pearson; Giger, J. N., & Davidhizar, R. E. (2013). Transcultural nursing: Assessment & intervention (6th ed.). St. Louis, MO: Mosby Elsevier; Spector, R. E. (2013). Cultural diversity in health and illness (8th ed.). Upper Saddle River, NJ: Pearson.

TABLE 2–7 Health Practices of Selected Cultures

Clinical Tip Some families believe in the hot and cold theory of disease, which subscribes to the thought that illnesses and diseases are a result of disruption in the hot and cold balance of the body. Therefore, consuming foods of the opposite variety can cure or prevent specific hot and cold illnesses. Hot and cold therapies related to healing are practiced in some African American, Asian, Latino, Arab, Muslim, and Caribbean cultures (Andrews & Boyle, 2012); see Table 2–8.

Faith-based belief and practice is an integral part of culture for some families. Views of religion and spirituality can shape their approaches and responses to a child’s illness and guide practices to maintain health. Religious beliefs may influence the family’s explanation of the cause of a child’s illness, their percep- tion of the severity of the illness, and choices of treatments for the illness, and can offer solace to the family and child. For these reasons, it is important to determine the influence of religion and spirituality within the family.

Faith and spirituality can be a source of great comfort and support for children who are ill and their families. Conversely, conflicts may arise between the family’s religion or spiritual- ity and biomedical care for the child. For example, the family’s pursuit of specific religious therapies can serve as a barrier to biomedical care, because some parents may believe that their spiritual practices can substitute for medical treatment of the child. Religion, commonly referred to as faith-based belief, is an organized system of shared beliefs regarding the significance of the nature, cause, and purpose of life and of the universe. Reli- gion is usually centered on the belief in or the worshipping of a supernatural or Supreme Being (such as God or Allah).

Spirituality refers to an individual’s experience and own interpretation of a relationship with a Supreme Being. Chil- dren are spiritual beings and generally express their spirituality through behavior such as imaginative play, art, dance, and song (Lascar, 2013). Prayer, one of the most common expressions of religious faith, is a frequently used therapy in which many chil- dren and families engage (Lambert, Fincham, & Graham, 2011; Wachholtz & Sambamoorthi, 2011).

Specific differences in beliefs between families and health- care providers are common in the following areas: help-seeking behaviors, causes of diseases or illnesses, death and dying, care- taking and caregiving, and childrearing practices.

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38 Chapter 2

Clinical Tip Avoid imposing your personal cultural values on the children and families in your care. By learning about the values of the different ethnic groups in the community—religious beliefs that have an impact on healthcare practices, beliefs about common illnesses, and specific healing practices—you can develop an individualized nursing care plan for each child and family.

Professionalism in Practice Standards of Practice for Culturally Competent Nursing Standards of Practice for Culturally Competent Nursing were developed to guide nursing practice. These stand- ards focus on clinical practice, education, administration, and research. Emphasis is placed on the importance of provided culturally competent care to all patients and families (Douglas, Pierce, Rosenkoetter, et al., 2011). Identify and learn more about the cultures in the commu- nity where you provide nursing care so that you provide culturally competent care to your patients.

Developing Cultural Competence Traditional Healthcare Providers When appropriate, collaborate with the family to deter- mine the role traditional healthcare providers and other practitioners (e.g., folk healers, spiritualists) will have in the care of the child. Encourage collaboration and commu- nication between practitioners to ensure continuity of care.

HOT CONDITIONS COLD FOODS USED TO TREAT HOT CONDITIONS COLD CONDITIONS

HOT FOODS USED TO TREAT COLD CONDITIONS

Diarrhea Fever Constipation Infection Kidney problems Liver conditions Sore throats Stomach ulcers

Barley water Chicken Dairy products Raisins Fish Cucumber Fresh fruits Fresh vegetables Goat meat

Cancer Earaches Headaches Musculoskeletal conditions Pneumonia Menstrual cramps Malaria Arthritis Rhinitis Colic

Beef Cheese Eggs Grains (other than barley) Liquor Pork Onions Spicy foods Chocolate Warm water with honey

Source: Data from Purnell, L. D. (2014). Guide to culturally competent health care (3rd ed.). Philadelphia, PA: F. A. Davis; Purnell, L. D. (2013). Transcultural health care: A culturally competent approach (4th ed.). Philadelphia, PA: F. A. Davis; Spector, R. E. (2013). Cultural diversity in health and illness (8th ed.). Upper Saddle River, NJ: Pearson.

TABLE 2–8 Hot and Cold Conditions and Foods

In differing degrees these elements influence the cultural beliefs and values of an ethnic group, making the group unique. Misunderstandings may occur when the healthcare professional and the family come from different cultural groups. In addition, past experiences with health care may have made the family angry or suspicious of providers. Nurses must be able to rec- ognize, respect, and respond to ethnic diversity in a way that leads to a mutually desirable outcome. The nurse must identify culturally relevant facts about the patient to provide culturally appropriate and competent care. For example, some cultural groups practice complementary and alternative therapies that are unknown to the nurse (see the section titled “Complementary and Alternative Modalities”). Although some of these therapies are beneficial or cause no harm, others may interact with pre- scribed medications and be harmful.

Cultural competence refers to the ability of the nurse to understand and effectively respond to the needs of patients and families from different cultural backgrounds (Spector, 2013). Recognizing the influence of culture on one’s beliefs, values, and healthcare practices is essential for the nurse in order to deliver culturally competent care. The nurse should also con- sider the potential that an extended family member may need to be consulted regarding the treatment plan for the child,

Nurses can also collaborate with a multidisciplinary team including social workers and language specialists to assist the family in receiving assistance with barriers to care such as transportation, financial issues, remote access, and others.

Complementary and Alternative Modalities Complementary and alternative modalities (CAM) are generally described as healthcare approaches that are not considered to be part of conventional Western medicine (National Center for Complementary and Alternative Medicine [NCCAM], 2013a). Although the terms complementary and alternative are often used interchangeably, they have different meanings and applications. A complementary therapy may be defined as any procedure or product that is used as an adjunct to conventional medical treat- ment (Mitchell, 2013; NCCAM, 2013a). An example of a comple- mentary therapy is the use of massage therapy in conjunction

especially if the child spends a lot of time with extended family members.

Nurses demonstrate appropriate strategies for deliver- ing culturally sensitive care when they develop techniques in assessing the influence of culture on the child and family and incorporate that information into an individualized plan of care. When the family’s cultural values are incorporated into the care plan, the family is more likely to accept and adhere to the recom- mended care, especially in the home care setting.

Culturally competent nurses find effective ways to work with the family to determine how they can incorporate pre- scribed therapies with their healthcare practices. Ensure that the child and family understand the problem or illness, treatment, and health promotion activities. Apply culturally sensitive tech- niques when dispelling any cultural myths. See Developing Cul- tural Competence: Traditional Healthcare Providers.

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Family-Centered Care and Cultural Considerations 39

The NCCAM (2013a) classifies complementary health approaches into two main subgroups: natural products and mind and body practices. Natural products include herbs, vitamins, min- erals, and probiotics (also referred to as dietary supplements). Examples of mind and body practices include acupuncture, mas- sage therapy, meditation, relaxation, yoga, healing (therapeutic) touch, and hypnotherapy. Some examples of complementary and alternative modalities are provided in Table 2–9.

Safety Issues Concerning CAM Therapies The misleading claims of usefulness, dosing safety of some prod- ucts, and lack of manufacturing standards of natural products are just a few of the issues raised with the use of herbs and natural products. Parents often believe that herbs and natural products are less likely to be harmful than prescribed medications, failing to

with biomedical therapy, such as narcotic analgesics, for a child with cancer pain.

In contrast, an alternative therapy is usually considered a substance or procedure that is used in place of conventional med- icine (NCCAM, 2013a). An example of an alternative therapy is the use of herbal medicines instead of traditional Western medi- cal care for a child’s health condition, such as surgery, radiation, prescribed medications, or other medical interventions.

The dramatic increase in complementary and alternative therapies that began in the final decade of the 20th century was probably the result of a combination of several factors:

š� Increased consumer awareness of the limitations of conven- tional Western medicine

š� Increased international travel š� Increased media attention š� Advent of the Internet

THERAPY DESCRIPTION POTENTIAL USE IN CHILDREN NURSING IMPLICATIONS

Aromatherapy Essential oils (extracts or essences) from flowers, herbs, and trees provide strong, pleas- ant odors to promote relaxation, health, and well-being.

The family may use candles or oils to promote a child’s pain relief or to encourage the child’s relax- ation. Use of aromatherapy in the hospital may reduce nausea due to hospital odors.

Few side effects when used as directed; however, allergies to oils may worsen symptoms in a child with asthma and other pulmonary disorders. Caution families to avoid aromatherapy.

Dietary supplements A product (other than tobacco) is taken by mouth that con- tains an ingredient intended to supplement the diet, such as vitamins, minerals, herbs or other botanicals, amino acids, and sub- stances such as enzymes, organ tissues, and metabolites. Dietary supplements come in many forms, such as extracts, tablets, capsules, liquids, and pow- ders. They have special labeling requirements.

Many parents administer daily multiple vitamins to their children. For example, echinacea is an herb that is used to treat colds and the flu and stimulate the immune system.

Assess the family’s use of dietary supplements for the child. Deter- mine potential interactions between supplements and prescribed medications. Teach parents about safe dosages and safe storage of vitamins and other dietary supple- ments for children. Herbs must be used with caution in children.

Massage Therapists press, rub, and manip- ulate muscle and soft tissues to enhance function of those tissues and promote relaxation, well- being, and relief from pain.

Massage is beneficial in children who have discomfort related to teething; it reduces colic, pro- motes sleep, reduces pain related to procedures such as immuniza- tions, and promotes growth of preterm infants (Fontaine, 2015). See Figure 2–11.

Assess the child for benefits of massage. Potential contraindica- tions to massage therapy may include bleeding disorders, frac- tures, and an open or healing wound.

Therapeutic touch In therapeutic touch, the heal- ing force of the therapist affects the patient’s recovery. Healing is promoted when the body’s energies are in balance. By pass- ing their hands over the patient, without touching the patient, healers can identify energy imbalances.

The family may enlist a spiritualist or other practitioner to perform therapeutic touch on the child to promote pain relief or a quicker recovery.

Assess the benefits of therapeutic touch on the child (e.g., pain relief). Partner with the family to establish other methods of pain relief if thera- peutic touch is not effective.

Faith-based therapies Prayer is a commonly used form of complementary therapy. Other faith-based therapies include faith healing, lying on hands, medita- tion, and anointing.

Families may include a variety of faith-based therapies, depending on the child’s condition. Spiritual health may help improve quality of care, decrease anxiety, and increase positive feelings, such as hope, optimism, and free- dom from regret.

Provide the child and family a pri- vate environment for faith-based practices. Assess for benefits of the therapies. Partner with the family to determine alternative methods of therapy if needed.

Sources: Data from Fontaine, K. L. (2015). Complementary and alternative therapies for nursing practice (4th ed.). Upper Saddle River, NJ: Pearson; National Center for Complementary and Alternative Medicine (NCCAM). (2013a). Complementary, alternative, or integrative health: What’s in a name? Retrieved from http://nccam.nih.gov/health/whatiscam/D347.pdf; National Cancer Institute. (2012). Spirituality in cancer care. Retrieved from http://www.cancer.gov/cancertopics/pdq/supportivecare/spirituality/Patient/

TABLE 2–9 Selected Types of Complementary and Alternative Modalities

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claims, safety related to megadoses of some products, and stan- dardization of natural products. Determine the family’s use of complementary and/or alternative medicine such as the type of remedies and healthcare practices used. Also determine the side effects, risks, and other implications to the child receiving this type of therapy. Partner with the family to ensure safe practices with the use of CAM products.

recognize that safety concerns exist. However, “natural” is not the same as safe, and many CAM products have not been evaluated for use in children. Examples of problems that may occur with the use of complementary and alternative modalities include:

š� Interaction with prescribed medications (interferes with metabolism of medication or increases the effect of the pre- scribed medication, like an overdose)

š� Side effect or allergic reaction directly associated with the product

š� Substitution of the product for a prescribed medication that is potentially lifesaving

š� Toxic effects because of contaminants or other additives in the product, or if the plant used for the herb was incorrectly identified

The use of CAM in the care of children must be addressed because of the limited research with this age group and develop- mental variations that may influence efficacy and safety. Although many CAM therapies may have been proven effective in adults, they may have little effect on children, or even be harmful. The National Institutes of Health and the Agency for Healthcare Research and Quality have set research agendas to investigate the effectiveness of CAM therapies for treatment.

Complementary and alternative modalities must be assessed for safety, including positive and negative benefits, cost, efficacy, and clinical usefulness. The use of herbs and natural products raises many issues, such as standards of products, misleading

Figure 2–11 Infant massage. SOURCE: Michele Davidson

SAFETY ALERT! Complementary and alternative therapies must be assessed for safety, including positive and negative benefits, cost, efficacy, and clinical usefulness. The use of herbs and natural products raises many issues, of which these are just a few: standards of products, misleading claims, and safety related to megadoses of some products. When the family does not disclose CAM use to the healthcare provider, the risk of interaction with conventional medicines and harm to the patient increases (Adams et al., 2013). See Families Want to Know: CAM Therapies.

Families Want to Know CAM Therapies Once the nurse has been informed about CAM therapies used, potential side effects and risks can be considered, such as inter- actions between an herb and a prescribed medication. Partner with the family to promote the following safe practices for CAM use (NCCAM, 2013b):

š� Ensure that your child has received an accurate diagnosis from a licensed healthcare provider and that CAM use does not replace or delay conventional medical care.

š� If you decide to use CAM for your child, do not increase the dose or length of treatment beyond what is recommended. More is not necessarily better.

š� If your child experiences an effect from a CAM therapy that concerns you, contact your child’s healthcare provider.

š� Store herbal and other dietary supplements out of the sight and reach of children.

Nursing Management The goal of culturally competent family-centered nursing man- agement is to assess and help families recognize their strengths and resilience. This information can then be used in collabora- tively planning the nursing care with the child and family. See Evidence-Based Practice: Investigating Culture and Healthcare Barriers.

Nursing Assessment and Diagnosis The presence of a newly acquired disability adds a dimension of developmental risk. The child and family members may respond with either psychologic or behavioral problems, or they may respond in a more positive manner.

Collect the psychosocial history and daily living patterns data from the family and child. Assessment of the culturally diverse child and family includes determining the family’s healthcare practices such as health traditions, health beliefs, health-seeking behaviors, healthcare practitioner, and religion or spirituality.

Select the appropriate family assessment tool to collect information that can help evaluate the family’s strengths and resources. Analyze the information collected and focus on key information that will help develop a plan of care for the child and family. Follow these steps:

š� Determine how this condition influences family functioning. š� Identify how all the family members have responded to the

child’s acute condition and disability.

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š� Social Interaction, Impaired (Parents and Child), related to lack of family or respite support

Planning and Implementation Families need support to increase resources and coping behav- iors so they can successfully manage the multiple stressors of daily living along with a child’s chronic condition.

Establishing a therapeutic relationship with the family is an important intervention. This relationship should be charac- terized by empathy and trust, as well as the development of mutually identified goals for the child’s care. To help families develop resilience, focus on family competence and strengths. Acknowledge and validate their emotions. Provide information in a clear, timely, and sensitive manner. Ask questions that help direct the family’s thinking rather than providing them with all the answers. Teach families to identify solutions until they are able to independently problem solve. Linkage with other families who have faced similar situations may be helpful.

š� Obtain information about how the family is considering management of the child’s care at home.

š� Determine if other family issues or stressors must be inte- grated into the plan of care.

š� Identify the family’s expectations of different health profes- sionals and facilities to help manage the child’s care.

š� Prepare an ecomap and genogram.

š� Coping: Family, Compromised, related to multiple simulta- neous stressors

š� Family Processes, Interrupted, related to child with a sig- nificant disability requiring alteration in family functioning

š� Caregiver Role Strain, Risk for, related to child with a newly acquired disability and the associated financial burden

Clinical Question What barriers to providing accessible health care exist among ethnically diverse families with children?

The Evidence Ferayorni, Sinha, and McDonald (2011) examined demographic characteristics, socioeconomic status, access to care, per- ceived barriers to care, compliance with follow-up care, and unmet health needs in foreign-born children who visited a pediatric emergency department. Parents of 385 children were interviewed during a visit to the emergency department and over the telephone 1 week after the visit. Twenty-three percent of these children did not have health insurance. Compared to children with health insurance, those who did not have cover- age were less likely to have a regular healthcare provider and a regular place for health and dental care. Parents of 31% of uninsured children cited a perceived barrier to care. Bar- riers reported most often were language, lack of insurance and inability to pay, and transportation. Parents of 26 chil- dren reported unmet healthcare needs, with a slightly higher prevalence among uninsured children as opposed to insured children. Dental care was the most commonly reported unmet healthcare need. Uninsured children who were foreign born were primarily Spanish speaking, poorer, and had poor access to health care. This population was also more likely to use the emergency department for its healthcare needs.

Adorador, McNulty, Hart, and Fitzpatrick (2011) exam- ined perceived barriers to immunizations in 108 Latino mothers of children in a low-income clinic. Results of the immunization survey revealed that 92% of mothers thought their children were up to date on their immunizations when health records indicated that only 42% were up to date. Barriers to immunizations identified by these moth- ers included the child being sick, transportation issues, no health insurance, affordability, language concerns, and childcare issues.

Taylor, Nicolle, and Maguire (2013) conducted interviews with 38 healthcare professionals to determine their perceptions

of the barriers that ethnic minorities who spoke poor or no English encountered when seeking health care. Five key themes emerged from the interviews: language; low literacy; retention of information; lack of understanding; and attitudes, gender attitudes, and health beliefs.

Best Practice Socioeconomic status is a theme in two of these studies. These families may not have health insurance, a regular healthcare provider, or adequate transportation. Nurses need to refer families to sources for healthcare services and then follow up to be sure the families were able to access care. Referrals to community health centers and instructions for transportation to the health setting are important for many families. A need for understandable information is another theme among most groups. Explaining why an immunization is needed as well as providing information about the child’s con- dition are important nursing roles. Interpreters may be needed to provide this information. Referring the family to others from the same ethnic or racial group and assisting them in navi- gating complex systems such as school and social services may also be necessary. Cultural differences and practices were also cited as a barrier to health care. It is essential that healthcare providers become familiar with other cultures and be accepting of practices that are safe for the child. By being open to practices of other cultures, healthcare providers will find families more willing to share openly about how they treat their children. This may lead to an opportunity for education related to unsafe practices.

Clinical Reasoning What is the process that immigrant families in your state or province must follow to secure health care for their children? How would you help to guide someone through this process? What cultural groups are common in your community? Do you speak their language? If not, what measures should you take to ensure that they understand the teaching offered in clinical settings? What type of support groups will be helpful for fami- lies when they have a child with special healthcare needs?

EVIDENCE-BASED PRACTICE Investigating Culture and Healthcare Barriers

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Assist the family to begin planning for ongoing care using family-centered principles:

š� Identify the primary decision maker for the child’s health care.

š� Discuss the family’s goals for managing the child’s care in the home setting.

š� Consider how the family’s strengths and previous problem-solving experiences can be integrated into the intervention.

š� Consider the family’s ethnic and religious background in developing intervention recommendations. Assist the child and family to determine how they can incorporate pre- scribed therapies with their healthcare practices. Ensure that the child and family understand the child’s illness, treatment, or health promotion. Apply culturally sensitive techniques when dispelling any cultural myths.

š� Ask questions in a respectful and nonjudgmental manner to help identify a family’s use of CAM, encouraging the parent to share the information.

š� Offer the family one or more potential interventions rather than trying to force one intervention. Be open to modi- fying the intervention or devising an alternative inter- vention to better match the family’s lifestyle or cultural preferences.

š� Identify the type of support or assistance the family would like to have.

š� Identify potential resources in the community that match the child’s and family’s needs for support. Collaborate with the family to discuss those resources and to select those that are acceptable to the family.

š� Make sure the family has a care coordinator, especially when a family member seems to be unable to assume the case management role initially. Assist families in obtaining resources through such actions as role rehearsal, providing instructions and support when making an initial call, or con- necting with another family support person who can help with resource linkage.

š� Refer families with moderate or severe dysfunction to com- munity resources for social support and counseling, as appropriate.

Evaluation Expected outcomes of nursing care include:

š� Collaboration of the child and family with an assigned case manager so that interventions are implemented as recom- mended by the nurse and healthcare team

š� Appropriate care provided by the family to the child with an acquired disability

Chapter Highlights š� The family is defined as two or more individuals who are joined

together by marriage, birth, or adoption and live together in the same household.

š� Family-centered care is a philosophy of health care in which a mutually beneficial partnership develops between families and the nurse and also other health professionals. In this way, the priorities and needs of the family are addressed when the fam- ily seeks health care for the child.

š� Various types of families exist and include the nuclear fam- ily, dual-career/dual-earner family, child-free family, extended family, extended kin network family, single-parent family, single-mother-by-choice family, blended or reconstituted nuclear family, binuclear family, heterosexual cohabitating family, and the gay and lesbian family.

š� Parenting is a leadership role in the family in which children are guided to learn acceptable behaviors, beliefs, morals, and ritu- als of the family, and to become socially responsible contribut- ing members of society.

š� Discipline is a method for teaching rules that govern behavior or conduct. Punishment is the action taken to enforce the rules when a child misbehaves.

š� The quality of the relationship between divorced parents has an important impact on their future relationships with their children. Better maintenance of family and kinship ties results

when divorced parents are able to minimize the conflict and continue sharing parenting.

š� The goal of foster care is to ensure the safety and well-being of vulnerable children by placing them in an approved living situation, away from the family of origin, that is legally coordi- nated by the state’s child welfare system.

š� Adoption is a legal relationship between a child and parents not related by birth in which the parents assume legal and financial responsibility for the child. Many children are adopted from foreign nations.

š� Family theories help in understanding family functioning, envi- ronment–family interchange, family changes over time, and the family response to health and illness.

š� Family development theories use a framework to categorize a family’s progression over time according to specific, typical stages in family life.

š� Family assessement tools are used to gather information about the family’s functioning with regard to characteristics such as nurturing its members, problem solving, and communication. Information gathered helps the nurse work more effectively with the family in meeting the child’s healthcare needs.

š� Resilience is the family’s capacity to develop strengths and abilities to bounce back from the stresses and challenges faced, and to eliminate or minimize negative concerns.

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Family-Centered Care and Cultural Considerations 43

Sixteen-year-old Casey is recuperat- ing from injuries sustained in a motor vehicle crash in which he was the pas- senger. He was not wearing a seat belt and experienced a brain injury after striking the windshield. His cognitive and motor functions are impaired. Following a 7-day acute care hospital stay, he was moved to an inpatient rehabilitation hospital where he has

been for the past 5 days. He is much more responsive to stimuli and to family members 12 days after his injury. Physical therapy is provided twice a day to promote range of motion and muscle tone and to prevent contractures. Plans are being made to discharge him to his home and provide him with outpatient rehabilitation care within the next 5 days. A case manager will be assigned to coordi- nate his healthcare services.

Casey lives with his mother, two half-brothers (10 and 6 years old), and stepfather. Both his mother and stepfather are employed full time and are trying to determine how to manage care for the teen when he returns home. Casey’s grandparents live nearby and may provide some support to the family. Because Spanish is the language spoken primarily by the family, teaching materials are provided in both Spanish and English.

Casey is totally dependent for care, including bathing, toilet- ing, feeding, and mobilizing. Although he is expected to regain

Clinical Reasoning in Action self-care abilities, the impact of the injury on his cognitive ability and future functioning is unknown.

During the past 12 days, Casey’s extended family has provided support to the family, but the level of support in the future weeks will decrease because of other family obligations. Casey’s mother has already initiated a leave of absence from work so she can care for him when he returns home; however, this will mean the family has reduced income during that time period. Casey’s younger brothers have been able to visit him, and they are very anxious because Casey cannot talk with them. They have been trying to avoid bothering their mother and father during this time, but they are wondering when life will be more normal and they can again participate in their usual after-school activities.

1. What information about the family strengths, needs, and resilience can be identified from the information just given?

2. What additional information would be helpful to know about family strengths and needs prior to developing a nursing care plan?

3. Based on your assessment of the family and the challenges facing the family members, list at least one nursing diagnosis that addresses issues important for planning nursing care for Casey and his family.

4. Describe the use of family-centered care principles in planning Casey’s nursing care in collaboration with the family.

š� Family strengths are the relationships and processes that sup- port and protect families and family members during times of adversity and change. These strengths enable families to develop, adapt to change, and cope with challenges.

š� Culture is a significant determinant of an individual’s beliefs, behavior, and response to health and illness. Parental beliefs and behaviors can either promote the child’s health care or impede preventive care, delay or complicate medical care, or result in the use of ineffective or harmful remedies.

š� Cultural competence refers to the ability of the nurse to under- stand and respond effectively to the cultural needs of the child and family.

š� A cultural assessment can assist the nurse in identifying cul- tural norms and in providing culturally appropriate nursing care. Providing spiritually sensitive care involves determin- ing the current spiritual and religious beliefs and practices that will affect the child and family, accommodating these practices where possible, and examining one’s own spiritual or religious beliefs to be more aware and able to provide nonjudgmental care.

š� Complementary and alternative therapies are defined as diverse medical and healthcare systems, practices, and products that are not presently considered to be part of conventional medicine.

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Chapter 3

Genetic and Genomic Influences

Learning Outcomes 3.1 Explain the role of genetic and genomic

concepts in health promotion, disease prevention, screening, diagnostics, selection of treatment, and monitoring of treatment effectiveness.

3.2 Elicit a family health history and construct a genetic pedigree.

3.3 Incorporate knowledge of genetic and genomic influences and risk factors into assessment, planning, and implementation of nursing care.

3.4 Integrate basic genetic and genomic concepts into child and family education.

3.5 Understand implications of genome science on the nursing role with particular attention to ethical, legal, and social issues.

3.6 Discuss the significance of recent advances in human genetics and genomics and their impact on healthcare delivery.

I came in for a sports physical, but I really want to be tested for Huntington disease. My mom’s father died from Hunting- ton when I was 8. My mom won’t really talk about it, but I know she doesn’t want to be tested. I have been doing some reading about Huntington disease, and I want to be tested. I mean, how can I plan my life if I don’t know how long I’m going to be able to enjoy it? —Sarah, 16 years old

Partnering With Families: Meeting the Standard of Genetic Nursing Care Delivery Completion of the Human Genome Project in 2003 heralded the dawn of the genomic era of health care. It has long been known that some diseases occur due to specific gene defects. Genetic diseases have traditionally been thought of as inherited diseases caused by a defect in a single gene. Although “typical” genetic diseases have enormous health consequences for affected indi- viduals and families, they have relatively little impact on the

health of most people. The Human Genome Project decoded human deoxyribonucleic acid (DNA), revealing the sequence of its 3 billion “letters” (also called bases or nucleotides). Research associated with the Human Genome Project has revealed vir- tually all diseases to have a genetic component. The human genome is the entire DNA sequence of an individual, and the study of genomics takes a holistic view of gene function. Human genomics is the study of all DNA in the human genome, includ- ing how genes interact with each other and with environmental, psychosocial, and cultural factors. Essentially all diseases and health conditions have both genetic and environmental com- ponents, but the genetic contribution to various diseases varies widely (Figure 3–1).

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46 Chapter 3

DNA is central to our state of health because of its role in determining the set of proteins an individual has available to carry out specific physiologic functions. There are about 21,000 genes in the human genome, and each gene directs the formation of one or more proteins (Lander, 2011). Proteins include enzymes, cell receptors, ion channels, structural molecules, antibodies, and other molecules necessary for biologic function. Good health is dependent on normal gene structure (or sequence) and normal gene function (or expression). Gene sequence, which is the order of the gene’s nucleotides or bases, determines whether a protein encoded by the gene has the correct amino acid sequence so that it can function normally. Normal gene function means that genes are expressed (i.e., translated and transcribed to make proteins) at the appropriate time and in appropriate amounts to support normal physiologic function.

Gene expression, which is affected by all manners of envi- ronmental and epigenetic effects, is therefore just as important as gene sequence. Genetic abnormalities may cause too much or too little of a specific protein, or perhaps a dysfunctional protein, to be formed. Sometimes the altered protein is suf- ficient to cause disease; this is the case with traditional genetic diseases such as cystic fibrosis and sickle cell disease. More often, multiple genetic variations, together with environmental factors, increase risk for disease. Both traditional genetic dis- orders and common complex diseases such as heart disease,

Figure 3–1 Although the causes for nearly all diseases and health conditions have both genetic and environmental components, the relative contribution of genetic and environmental influences varies widely. At one end of the spectrum lie “traditional” genetic diseases, such as cystic fibrosis (CF). Although CF is caused by a gene alteration, its morbidity and mortality vary according to environmental effects such as medical management. On the other hand, AIDS is an infectious disease that will not occur without environmental exposure to HIV. Still, there are genetic alterations that cause some people to be resistant to HIV infection. In type 2 diabetes, the genetic and environmental contributions are fairly equivalent. SOURCE: Copyright © by Francis Collins. Used by permission of Francis Collins.

stroke, diabetes, and cancer are now known to be related to variation in gene sequence and gene expression. Research has uncovered many of the genetic and environmental factors that increase risk for disease, leading to development of new treat- ments that range in scope from promoting healthy lifestyles to specific genetic therapies. Knowledge gained from human genome research is anticipated to transform health care across the entire continuum of care, allowing care to be tailored to each person’s individual risk for disease. Genomic informa- tion is already being used to personalize health promotion and disease prevention, screening, treatment, and monitoring of treatment effectiveness (Green, Guyer, & National Human Genome Research Institute, 2011).

Nurses must be prepared to deliver genetically competent care in many healthcare settings to individuals, families, com- munities, and populations. Nurses in newborn nurseries and mother–baby units may be the first to suspect a newborn has a genetic condition. Pediatric nurses often care for children with genetic conditions who may require frequent hospitalization. Nurses in general and specialty clinics must be prepared to help asymptomatic individuals and families who are increasingly seeking information about their risk for an inherited disease or condition. Parents who order direct-to-consumer genetic tests may bring questions about their results to nurses. For these and other reasons, nurses must achieve genetic and genomic literacy in order to deliver competent care in the genomic era.

The translation of genetic and genomic knowledge to clin- ical care requires nurses to integrate new genetic knowledge into their nursing practice. This expectation was formally estab- lished in 2007 by the American Nurses Association (ANA) and the International Society of Nurses in Genetics (ISONG) in a joint statement, Genetics/Genomics Nursing: Scope and Standards of Practice. This document, now in its second edition (2016), outlines the levels of genetic knowledge required of all regis- tered nurses, including basic and advanced practice nurses in general practice as well as those who specialize in providing genetics services. In addition, a set of essential competencies in genetics and genomics has been defined and endorsed by nearly 50 nursing organizations. These competencies repre- sent the minimal level of genetic and genomic competency expected of every registered nurse across all practice settings (Consensus Panel on Genetic/Genomic Nursing Competen- cies, 2009). Examples of nursing activities that reflect genetic and genomic competence include:

š� Identifying risk for disease by collecting a family history and drawing a three-generation pedigree

š� Helping individuals and families to understand the implica- tions and limitations of genetic testing

š� Administering gene-based therapies š� Providing nondirective counseling to assist families who

have questions or concerns about their reproductive risks š� Recognizing signs and symptoms, such as dysmorphic fea-

tures or hypotonia, that may indicate a genetic condition in a newborn

š� Anticipating variable responses among individuals to “standard” medication doses, due to pharmacogenetic effects

š� Ensuring the delivery of genetically competent care for the child and family—for example, ensuring that a child about to start thiopurine treatment has completed pharmacoge- netic testing

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Genetic and Genomic Influences 47

š� Nurses should recognize hypotonia (reduced muscle tone, limited voluntary movement, reduced strength, and joints with increased range of motion) in newborns and advo- cate for a referral for the infant to be evaluated by a genetic specialist (Prows, Hopkin, Barnoy, et al., 2013).

š� A child who screens positive for scoliosis (see Chapter 29) should be assessed for axillary freckling and café au lait spots, due to the relationship between scoliosis and neurofibromatosis.

š� Screening for Marfan syndrome (see Chapter 21) should be a part of all sports physicals, due to the lethal cardiovascular complication of aortic dilation. This can be accomplished by assessing for common characteristics such as myopia, sco- liosis, tall stature, long fingers and thumbs, a hollow chest, and an arm span greater than the height.

š� Nurses should both teach and support families regarding any specific interventions necessary to avoid complica- tions in children with genetic conditions. Examples are the importance for children with phenylketonuria (PKU) to maintain a phenylalanine-free diet for life, and the need to maintain children with sickle cell disease (see Chapter 23) on penicillin.

š� Helping individuals and families identify credible sources of genetic information

š� Applying concepts of health promotion and health mainte- nance to assist children and families who are at increased risk to develop common chronic conditions, such as heart disease, to make informed lifestyle choices

š� Partnering with families affected by genetic conditions, including providing advocacy, supporting the child’s and family’s decisions, teaching, facilitating appropriate refer- rals, clarifying information, and providing further informa- tion about available resources and services

š� Partnering with the community to educate the public about genetics

š� Supporting legislation to protect genetic information and to protect those with genetic conditions from discrimination

š� Applying knowledge of the ethical, legal, and social implica- tions of genetic information

Through informed application of fundamental genetic and genomic concepts, nurses can significantly improve the nursing care provided to children and their families. In fact, understand- ing and applying these concepts is an essential part of child and family nursing.

Impact of Genetic Advances on Health Promotion and Health Maintenance Health promotion and health maintenance for children and their families are foundational for all nursing care (see Chapters 6 through 9). The genomic era offers a promise of pre- cision health care based on an individual’s or a population’s risk for disease, which varies according to the set of genes they inherited, cultural influences, and a multitude of environmen- tal factors to which they are exposed. Although some people may be aware that they carry an altered gene associated with a specific disease, most individuals do not know details of their genetic makeup or how their genetic inheritance influences their future health. This is particularly true for common condi- tions such as heart disease and diabetes, for which risk varies with inheritance of a number of altered genes and is modified by lifestyle factors such as diet and physical activity. Having specific knowledge about one’s genetic makeup and associated increased risk for disease provides a basis for health screening and may provide motivation for people to maintain a healthy lifestyle. Imagine, then, if people knew their statistical risks for inheriting or developing disease, based on their specific geno- type. Health promotion and health maintenance teaching and nursing interventions would be targeted to individuals accord- ing to their disease risk. Children and families may experience increased motivation to adhere to lifestyle choices and health screenings that are personalized according to their disease risk. Precision health care is a major goal in the genomic era (Collins & Varmus, 2015).

With knowledge of how genetic variations influence health, the pediatric nurse can ensure health teaching and early detection of complications from genetic conditions with emphasis on primary and secondary health promotion and dis- ease prevention. For example:

š� Nurses should ensure informed consent for newborn screen- ing and provide teaching and support to families whose infants have positive screens.

Professionalism in Practice Using the People-First Approach The nurse must incorporate a person-first philosophy and use genetic terminology that promotes an individual’s positive self-image. When communicating genetic con- cerns to children, families, other healthcare providers, or the public, take care to use words that do not reflect value.

Use the term wild type gene or expected gene or unaltered gene (rather than “normal” gene) and altered gene or disease-producing gene (rather than “mutated” or “abnormal” gene).

Name the diagnosis rather than apply the label. For example, newborn Sammy, who exhibits Down syndrome, should not be identified as the “Down baby” but as Sammy who has Down syndrome. And describe Sally as having (a diagnosis of) autism, not as being autistic.

Also, the term cognitive disability or intellectual disability is preferred (rather than “mental retardation”). Source: Adapted from Snow, K. (n.d.). People first language. Retrieved from http://www.disabilityisnatural.com/images/PDF/pfl09.pdf

š� When caring for the child with Down syndrome (see Chapter 28), the pediatric nurse can help the parents shift from the more expected and traditional focus of disease management to health promotion and protection by teach- ing parents about the established guidelines for exams and screenings specific to children with Down syndrome.

Early diagnosis allows early intervention with health- promoting care specific to a genetic diagnosis, promoting achieve- ment of maximal function, better health, and improved quality of life for children affected with genetic alterations. The pediatric nurse must be able to identify available community-based and genetic-based resources to assist the child or adolescent and the family with strategies to support both health promotion and health maintenance activities.

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preparing a karyotype, or picture of an individual’s chromo- somes (Figure 3–2). Sperm and ova represent exceptions to the 23–pair rule because each contains only a single chromosome from each homologous pair.

Cell Division Mitosis and meiosis are the two types of cell division in humans. Mitosis takes place in somatic or tissue cells of the body, allow- ing the formation of new cells. Cell division by mitosis results in two cells called daughter cells that are genetically identical to the original cell and to each other. Mitosis is responsible for rapid human growth in early life and also replaces cells lost daily from skin surfaces and the lining of gastrointestinal and respiratory tracts.

Meiosis is also known as reduction cell division. Meiosis occurs only in the reproductive cells of the testes and ovaries and results in the formation of sperm and oocytes (gametes). Meiosis is similar to mitosis in that it is a form of cell division; however, through a series of complex mechanisms, the amount of genetic material is reduced to half. Each gamete contains a single copy of each of the 22 autosomes, plus a single sex chromosome. This is critical to ensure that when two gam- etes combine during fertilization, the correct total number of chromosomes (46) is present in the offspring’s cells. The other purpose of meiosis is to make new combinations of genetic material through processes of crossing over and independent assortment. New combinations are necessary to promote diver- sity in the human population. Crossing over results from an exchange or shuffling of material between homologous chro- mosomes inherited from the father and mother. This exchange results in new intact chromosomes that represent a patchwork of maternal and paternal genetic material. Only the Y chromo- some does not have the ability to cross over, since it lacks a homologous mate. Independent assortment means that chro- mosome pairs segregate randomly into one or another gam- ete, further enhancing the genetic diversity that is possible at fertilization.

Genetic Basics A basic knowledge of the cell, DNA, cell division, chromosomes, and genes is essential to deliver the genetic standard of care to children, adolescents, and their families.

The cell is the basic unit of life and the working unit of all liv- ing systems. Life starts as a single cell, but the developed human body is made up of trillions of cells. These cells share common features such as a nucleus that contains 46 chromosomes and organelles such as mitochondria. Cells are specialized in appear- ance and function, according to their location. For example, pan- creatic cells function much differently than nerve cells.

All human cells, except red blood cells, contain a complete set of DNA molecules, which are long sequences of nucleotides. A nucleotide is a base with an attached sugar and phosphate group. Four different bases, designated A, C, T, and G, make up DNA. The order, or sequence, of these bases provides exact instructions for protein building. The entire DNA in a human cell is referred to as the human genome. Most of the DNA is organized into chromosomes, which are contained in the cell nucleus. A small amount of DNA is found in the mitochondria, which is discussed later in this section. Each person’s genome is unique, with the exception of monozygotic twins, who are derived from the same fertilized ovum and therefore share iden- tical DNA.

Each cell nucleus contains about 6 feet of DNA that is tightly wound and packaged into 23 pairs of chromosomes, making a complete set of 46 chromosomes. The set includes 22 pairs of autosomes, which are by tradition numbered according to size, with chromosome 1 being the largest. There are two cop- ies of each autosome, one inherited from the mother and the other from the father. Copies of a chromosome pair are called homologous chromosomes. The 23rd chromosome pair, the sex chromosomes, determines an individual’s sex. A female has two copies of the X chromosome (one copy inherited from each parent), and a male has one X chromosome (inherited from his mother) and one Y chromosome (inherited from his father). The structure and number of chromosomes can be shown by

Figure 3–2 A karyotype is a picture of an individual’s chromosomes. It depicts the number and structure of the 22 pairs of autosomes and the sex chromosomes. A, Female. B, Male. SOURCE: Greenwood Genetic Center.

A B

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Genetic and Genomic Influences 49

or an additional segment (duplication) of genetic material. These are called unbalanced rearrangements. Conditions associated with unbalanced rearrangements may be incompatible with life or cause altered physical and/or mental development. An example is cri du chat syndrome, caused by a large deletion on chromo- some 5. Children with cri du chat have microcephaly (a small head), significant intellectual disability, and a peculiar cry dur- ing infancy that sounds like a cat mewing (Schaaf, Zschocke, & Potocki, 2012).

Translocation. Translocation occurs when two, usually nonhomologous, chromosomes exchange segments of DNA. A translocation that results in a correct amount of chromosomal material but a new arrangement is a balanced translocation. The individual who has a balanced rearrangement has all the chro- mosomal material present and therefore does not usually have any physical or mental disabilities. However, individuals with a balanced translocation are at high risk to produce gametes with unbalanced rearrangements. This leads to increased risk of pregnancy loss or having children with mental and/or physical disabilities due to missing or extra genetic material. In about 4% of cases of Down syndrome, the extra chromosome 21 is due to a translocation (Schaaf, Zschocke, & Potocki, 2012). When a child with Down syndrome is born, it is important to conduct a chromosome study to determine if the cause is nondisjunction or translocation. Translocation is unrelated to maternal age, but it carries a significantly greater recurrence risk with subsequent pregnancies.

Genes In addition to understanding chromosomal alterations, the nurse must have knowledge of genes—what they are, their func- tion, and the consequences of gene alterations. The nurse must understand the inheritance of gene alterations in order to design appropriate nursing interventions and teach the child, adoles- cent, and family at risk for or with a known genetic condition. Also, as genetic influences on common chronic disease are bet- ter understood, knowledge of gene function and inheritance has become increasingly relevant in health promotion and health maintenance.

A gene is a small segment of a chromosome that can be identified with a particular function, most commonly protein production. Each chromosome contains many genes arranged in a linear order. Genes that reside on autosomes (i.e., chro- mosomes 1 through 22) come in pairs, with one copy on each homologous chromosome. Each gene copy, or allele, is inherited from a different parent; therefore, pairs of alleles likely have dif- ferences in their nucleotide sequence. These differences may be so minor that they don’t affect gene function at all, or they may disrupt or totally disable the gene. An individual who has two functionally identical alleles of a gene is said to be homozygous (homo = same) for that gene. An individual whose alleles for a particular gene function differently is said to be heterozygous (hetero = different) for that gene. As previously discussed, genes on the sex chromosomes of males are unpaired, because the X and Y chromosomes contain different genes.

Genes have a specific location on a designated chromo- some; this is called the genetic locus. Gene mapping has doc- umented the locus for most human genes. For example, it is known that the Huntington gene is located at the tip of chro- mosome 4, whereas the gene associated with cystic fibrosis is

Chromosomal Alterations Alterations in chromosomes sometimes occur during cell divi- sion (meiosis or mitosis) and are classified as alterations in either chromosome number or chromosome structure. The clinical consequences of both types of alterations vary according to the amount of DNA involved.

ALTERATIONS IN CHROMOSOME NUMBER An increase or decrease in chromosome number is called aneuploidy. Aneuploidy is the result of an error during cell division, most often when nondisjunction occurs during meio- sis. With nondisjunction, paired homologous chromosomes do not separate before migrating into egg or sperm cells. This cre- ates a gamete with either two copies or no copies of a particu- lar chromosome. When such a gamete is fertilized by a normal gamete with all 23 chromosomes, a zygote that is monosomic (missing one member of a chromosome pair) or trisomic (having three homologous chromosomes instead of the usual two) results.

In general, humans do not tolerate either extra or missing DNA very well. Most monosomic or trisomic conceptions result in early pregnancy loss. For example, Turner syndrome is the only monosomic condition that is compatible with life. Trisomies involving chromosomes with small numbers of genes may result in live births. Examples are trisomy 13 (Patau syndrome), trisomy 18 (Edwards syndrome), and trisomy 21 (Down syndrome). Each of these aneuploidies produces clinical features that vary accord- ing to the chromosome that is duplicated. It is not a coincidence that the three trisomic conditions that are not universally lethal involve duplication of chromosomes containing the smallest number of genes (Pierce, 2014).

Mosaicism. Monosomy and/or trisomy can also occur dur- ing mitosis, resulting in an individual with two, or occasionally more, separate cell lines with different chromosomal makeup. This is known as mosaicism. The earlier in development the error occurs, the more cells that will be abnormal. The converse is also true. The degree to which a person is affected by this chromo- somal error varies. For example, individuals with mosaic Turner syndrome may show varying degrees of infertility or short stat- ure, and an individual with mosaic Down syndrome may have a higher intelligence level than children whose every cell has three copies of chromosome 21.

STRUCTURAL CHROMOSOMAL ALTERATIONS Inversion. A chromosomal inversion occurs when a chro- mosome breaks in two places and the piece between the breaks turns end for end and reattaches within the same chromosome. An inversion changes the DNA sequence for that portion of the chromosome. Inversion often results in balanced rearrangements, because the amount of DNA in the chromosome remains nor- mal. The clinical consequences of an inversion depend on how much chromosomal material is involved and where the inversion occurs. For example, an inversion that occurs between genes may have no effect on health, whereas an inversion within the gene that codes for factor VIII, a clotting factor, is an important cause of hemophilia A.

Deletion and Duplication. Chromosomal alterations sometimes occur when unequal crossing over or abnormal segre- gation causes a chromosome to have a missing segment (deletion)

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50 Chapter 3

a small amount of DNA. Mitochondrial DNA (mtDNA) contains 37 genes with roles in generating energy (in the form of adenos- ine triphosphate [ATP]) from glucose (Turnpenny & Ellard, 2012). Cells requiring large amounts of energy contain more mitochon- dria than other cells. Mitochondrial DNA is inherited from the mother in a unique matrilineal pattern. This occurs because mito- chondria are located in the tail of the sperm, which detaches at fertilization. A female with a mitochondrial gene mutation will consequently pass that mutation to all her children, whereas an affected male will not pass a mtDNA mutation to any of his children (Turnpenny & Ellard, 2012). Clinical manifestations occurring as a result of mitochondrial gene alterations primarily affect high-energy tissues such as brain and cardiac and skeletal muscle.

HUMAN GENETIC VARIATION The Human Genome Project and other genetic studies have shown that humans are remarkably similar to each other at the DNA level. On average, any two humans vary in less than 1% of their nucleotide sequence. Much of human variation can be attributed to single-nucleotide (or “single-letter”) changes in DNA sequence. DNA sequencing of hundreds of individuals around the globe has shown that single nucleotide changes occur at about 38 million sites (or loci) across the genome (The 1000 Genomes Project Consortium, 2012); the rest of the genome is identical in Ú 99% of individuals. These single-letter variations are called single nucleotide polymorphisms or SNPs (pro- nounced “snips”). Most SNPs are benign, although collectively they account for much phenotypic variation in appearance and risk for disease. They have been mapped to the human genome, and the resulting SNP maps are of enormous value to research- ers. For example, scientists studying the genetics of type 2 dia- betes mellitus have compared SNP patterns in large numbers of individuals with and without the disease to identify genetic variations associated with this common multifactorial disease. Such genome-wide association studies (GWAS) are uncovering the genetic contribution to common chronic conditions that cause most of the disease burden in developed countries.

In recent years, DNA research has identified copy number variation as an additional source of human genetic variation. In some individuals, stretches of DNA of variable size (up to 3 million bases and sometimes containing entire genes) are missing or replicated one or more times. Copy number variants (CNVs) appear to be fairly common; on average, each person is believed to have about 100 CNVs of various sizes (Lander, 2011). A CNV that contains an entire gene may result in more than expected gene product. In some cases, copy number varia- tion has been associated with disease, birth defects, or the rate of metabolism of some drugs (Pierce, 2014).

GENE ALTERATIONS AND DISEASE An alteration in the DNA sequence of a gene may cause a defec- tive protein to be formed, which may have clinical significance. Gene alterations can be inherited, or they can be acquired. Muta- tions inherited from one or both parents (hereditary mutations) are also known as germline mutations because the mutation exists in the reproductive cells or gametes. Consequently, the DNA in every cell of that offspring will have the gene alteration, which can then be transmitted to following generations.

The second kind of gene alteration is an acquired, or somatic, mutation. These are mutations that occur in the DNA of cells of an individual at any time throughout a lifetime. They result from errors during cell division (mitosis) or from envi- ronmental influences such as radiation, toxins, or viral infec- tions. Acquired mutations are also called sporadic or de novo

on chromosome 7. It is important to remember that all people share the same set of genes. For example, not only people with Huntington disease have the Huntington gene. All people (with probable rare exceptions) have two copies of the Huntington gene, and people who carry a particular mutation in one of their Huntington genes will develop disease. In everyday language, people tend to use a kind of shorthand that infers that particular genes are “disease genes.” Someone might say, for example, “I have the BRCA gene” when they mean their BRCA gene has a mutation that increases their risk for cancer. The BRCA gene itself is a tumor suppressor gene found in all people that, when functioning normally, protects against cancer. Nurses should try to be precise in their language to avoid reinforcing common misconceptions.

Genes are described as altered or mutated when a change has taken place in their nucleotide sequence. Such a change may or may not result in an altered protein product; a gene alteration that does not change the protein product is called a polymorphism or silent mutation. Other changes in nucleotide sequence, perhaps at a locus some distance from the gene itself, may affect gene expression—a gene’s activity in making protein. Smaller, non- DNA molecules are also involved in gene expression; these epi- genetic effects can cause genes to be overexpressed (making more than expected protein product), underexpressed (making less than expected), or expressed at a time in development when the gene is normally inactive. The observable, outward expression of an individual’s entire physical, biochemical, and physiologic makeup, as determined by the person’s genotype and environ- mental factors, is referred to as phenotype. Phenotype may be expressed as physical appearance such as curly or straight hair or physiologic function such as signs or symptoms of a disease.

FUNCTION AND DISTRIBUTION OF GENES It is believed that only about 1% of the human genome is actually represented by genes (McCarthy, McLeod, & Ginsburg, 2013). The vast majority of human DNA does not encode proteins. In humans, protein-coding DNA is organized into about 21,000 genes (Lander, 2011); each individual’s particular set of genes represents his or her genotype. These 21,000 genes are respon- sible for encoding hundreds of thousands of proteins that carry out all physiologic functions. An error, or mutation, in a gene can disrupt the order of amino acids that make up that gene’s protein product. A protein with an incorrect amino acid may assume the wrong three-dimensional shape and, because protein function is dependent on protein shape (or configuration), the protein may not function as expected. Proteins are highly specialized and perform virtually all cellular functions. They form structures, transmit messages between cells, fight infection, direct genes to turn on or off, metabolize nutrients and drugs, and sense light, taste, and smell. Drug receptors, antibodies, and ion channels are proteins. When proteins do not function normally, health may be impaired.

Gene activity in making proteins (gene expression) can change moment to moment in response to thousands of intra- and extracellular signals. An example is the mechanism that stimulates cells to produce insulin after eating a candy bar. After eating, a gene on chromosome 11 of pancreatic cells is activated and produces insulin. Although the insulin gene is present in all nucleated cells of the body, it is functional only in insulin- secreting pancreatic cells.

MITOCHONDRIAL GENES Chromosomes in the cell nucleus are not the only site where genes reside. Mitochondria (organelles involved in energy metabolism, known as the “powerhouse” of the cell) also contain

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Genetic and Genomic Influences 51

the altered gene) experience markedly delayed progression from the point of HIV infection to the development of AIDS (Lewis, 2015). As genome research continues, more beneficial gene altera- tions are being identified.

Principles of Inheritance Knowledge of inheritance prepares nurses to offer and reinforce genetic information to children, adolescents, and their families. Genetic knowledge may be important in assisting patients with care management and reproductive decision making. Nurses should apply basic principles of inheritance to risk assessment and teaching; these include (a) nearly all genes are paired, (b) only one gene of each pair is transmitted (passed on) from each parent to an offspring, and (c) one copy of each gene in the offspring comes from the mother and the other copy comes from the father. Understanding of Mendelian patterns of inheritance is based on these principles.

Classic Mendelian Patterns of Inheritance Conditions that are caused by a mutation or alteration of a single gene are known as monogenic or single-gene disorders. More than 5000 known single-gene disorders have been catalogued, with detailed information posted to a searchable public database, the Online Mendelian Inheritance in Man (OMIM, 2014). Single- gene disorders are known as Mendelian disorders because they are predictably passed on from generation to generation fol- lowing Mendel’s laws of inheritance. Monogenic disorders that occur due to a mutation on an autosome (chromosome numbers 1 through 22) are most commonly inherited in an autosomal domi- nant or autosomal recessive pattern. Disorders due to a mutation on one of the sex chromosomes are inherited in an X-linked, or occasionally Y-linked, pattern. See Table 3–1.

DOMINANT VERSUS RECESSIVE DISORDERS For some disorders, the presence of a single altered gene allele is enough to cause disease; these disorders are said to be dominant. An individual who is heterozygous for a dominant disorder will therefore have (or express) the disorder, despite the presence of one normally functioning allele. Other disorders occur only when both alleles of a gene pair are altered. In these recessive disorders, the gene product produced from a single unaltered gene is sufficient to perform the expected function and maintain homeostasis. Because most human genes reside on autosomes, the most common inheritance patterns are therefore called autosomal dominant or autosomal recessive.

AUTOSOMAL DOMINANT More than half of the known Mendelian conditions are auto- somal dominant (AD). Examples include neurofibromatosis, achondroplasia (dwarfism), Marfan syndrome, Huntington disease, and familial hypercholesterolemia. By definition, AD disorders involve altered genes on autosomes rather than the sex chromosomes X and Y. Disease occurs in AD disorders despite the presence of one unaltered gene, and most individuals with AD disorders are heterozygous for the disease-producing gene. Homozygous dominant conditions can occur, but they are gen- erally much more severe or lethal and frequently result in early pregnancy loss. For example, the child who is born homozygous for achondroplasia (dwarfism with short stature and short limbs) is much more severely affected than a heterozygous child and usually will not survive early infancy.

mutations. Most cases of cancer, for example, are due to somatic mutations. Somatic mutations are not passed from one genera- tion to another.

Single-gene alterations are responsible for more than 5000 hereditary diseases such as cystic fibrosis, Duchenne muscular dystrophy, and phenylketonuria (Online Mendelian Inheritance in Man [OMIM], 2014). Each of these disorders is relatively rare, although collectively they affect 1 of every 200 newborns (Schaaf, Zschocke, & Potocki, 2012). Although they are of enormous con- sequence to affected families, they constitute a relatively small portion of the total public health burden.

Genes vary enormously in size, but all are very long, con- taining tens of thousands or even hundreds of thousands of base pairs. Consequently, mutations can occur at various different loci within a gene and result in a wide variety of signs and symp- toms. For example, the cystic fibrosis transmembrane conduc- tance regulator (CFTR) gene on chromosome 7 contains about 250,000 base pairs and encodes a protein that forms a chloride channel. More than 1000 different CFTR mutations that disrupt the chloride channel have been identified (Turnpenny & Ellard, 2012). Some of these mutations cause cystic fibrosis; others are associated with milder disorders such as absence of the vas defer- ens, pancreatitis, and rhinosinusitis. Most genetic tests for cystic fibrosis will detect only the most common CFTR mutations.

Alterations as small as a single nucleotide are known to cause disease. Sickle cell disease is such a disorder: A single A-for-T substitution in the HBB gene causes an incorrect amino acid (valine) to be inserted at a site in the protein product (b@globin) normally occupied by a different amino acid (glutamic acid). The altered b@globin protein is then incorporated into hemoglobin molecules. Under conditions of low oxygen tension, the altered b@globin causes red blood cells to assume an abnormal, sickle- like shape. This leads to vascular occlusion and hemolytic anemia (Turnpenny & Ellard, 2012).

In other situations, multiple gene alterations along with environmental factors contribute to disease or health conditions. These conditions are said to be multifactorial. Most common chronic disorders—including hypertension, heart disease, type 2 diabetes, and most cancers—are multifactorial, as are several birth defects. Alterations in regulatory genes may also occur. Reg- ulatory elements are stretches of DNA sequence, usually located between genes, which control gene expression or activity in making proteins. They include gene promoters, enhancers, silencers, and other control mechanisms and are important in maintaining homeostasis. Mutation of a regulatory gene might lead to the loss of expression of a gene, unexpected expression in a tissue in which it is usually silent, or a change in the time when a gene is expressed. Small, non-DNA molecules are also known to affect gene function; these epigenetic factors are of great interest in genetics research.

GENE ALTERATIONS THAT DECREASE RISK OF DISEASE Although gene mutations are commonly associated with disease, they can also be helpful and decrease the risk of disease. For example, having a single copy of some genes known to cause autosomal recessive disorders can provide protection against dis- ease. Individuals with a single altered sickle cell disease (SCD) gene are less likely to develop malaria. Another protective gene alteration involves a deletion in the CCR5 gene, which encodes a cell receptor to which the human immunodeficiency virus (HIV) binds. Persons who have two copies of the altered CCR5 gene are almost completely resistant to infection with HIV type 1, and those who are heterozygous for the deletion (have one copy of

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52 Chapter 3

disease (SCD) provides an example: Although individuals with a single copy of the altered gene are usually asymptomatic, they can develop symptoms in situations of extreme physical exertion, dehydration, or high altitude (Bender & Seibel, 2014). The hetero- zygous or carrier state for SCD (known as sickle cell trait) actu- ally affords some evolutionary benefit, because a single copy of the altered gene provides some resistance to malaria. Individuals

Inheritance Risk in Autosomal Dominant Condi- tions. Because the gene alteration in AD conditions occurs on an autosome rather than a sex chromosome, both males and females have an equal chance of being affected. There is a 50% chance that an affected parent will pass the altered disease-producing gene on to a child. Nurses must remember and teach families that each pregnancy is an independent event with a 50% chance of an affected child, no matter how many of a couple’s previous chil- dren inherited the altered gene. Family histories will often reflect this 50% inheritance rate as well as both males and females being affected. An affected child always has an affected parent, who in turn also has an affected parent (Figure 3–3). Exceptions to this inheritance pattern occur when the condition is due to a spontane- ous new mutation, as discussed later in this chapter.

AUTOSOMAL RECESSIVE Autosomal recessive (AR) conditions occur when both copies of the same gene in an individual are altered. Generally, AR condi- tions are more severe and have an earlier onset than conditions with other patterns of inheritance. Examples of AR conditions include cystic fibrosis, sickle cell disease, Tay-Sachs disease, and most inborn errors of metabolism. Like autosomal dominant dis- orders, AR conditions involve genes on one of the 22 autosomes. A condition is called “recessive” when two altered copies of a gene are needed to express the condition. A child born with a recessive condition has therefore inherited one altered gene from each parent. Both parents are carriers of the condition. Usually carriers do not exhibit signs or symptoms; however, exceptions to this general rule are increasingly being discovered. Sickle cell

GENETIC CONDITION DESCRIPTION INHERITANCE PATTERN

Achondroplasia Abnormal bone growth resulting in short stature Autosomal dominant More than 80% of cases represent a new mutation

Beta-thalassemia Reduced synthesis of hemoglobin A resulting in anemia

Autosomal recessive

Cystic fibrosis Complex multisystem disease leading to end-stage lung disease

Autosomal recessive

Duchenne muscular dystrophy

Progressive disease leading to atrophy of skeletal and/or cardiac muscle

X-linked recessive

Fragile X syndrome Minimal-to-moderate intellectual disability due to trinucleotide repeat expansion

X-linked recessive Anticipation is demonstrated

Gaucher disease Several subtypes, but all are lipid storage diseases due to enzyme deficiency

Autosomal recessive

Hemophilia A Bleeding disorder due to deficient factor VIII clotting activity

X-linked recessive About 30% of cases represent a new mutation

Marfan syndrome Connective tissue disorder with cardiovascular, ocular, and skeletal involvement

Autosomal dominant 25% of cases represent a new mutation

Neurofibromatosis (NF-1) Variable expression with café au lait spots and benign cutaneous and subcutaneous neurofibromas

Autosomal dominant 50% of cases represent a new mutation

Phenylketonuria (PKU) Enzyme deficiency results in accumulation of phenylalanine, inhibiting brain and cognitive development

Autosomal recessive

Sickle cell disease Abnormal hemoglobin causes vaso-occlusive events and chronic anemia

Autosomal recessive

Tay-Sachs disease Fatal neurodegenerative disorder of lipid accumula- tion due to enzyme deficiency

Autosomal recessive

Source: Information adapted from Online Mendelian Inheritance in Man (OMIM). Retrieved March 14, 2014, from http://omim.org/

TABLE 3–1 Selected Genetic Conditions Inherited in a Mendelian Pattern

Figure 3–3 Autosomal dominant pedigree: One parent is affected. Statistically, 50% of offspring will be affected, regardless of gender.

= Affected male

= Affected female

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Genetic and Genomic Influences 53

Inheritance Risk in Autosomal Recessive Condi- tions. Because AR conditions do not involve genetic mate- rial on the sex chromosomes, males and females have an equal chance of inheriting the altered genes and exhibiting the condi- tion. When both parents are carriers of an autosomal recessive gene alteration, each pregnancy presents the same inheritance risks. Each child born to carrier parents has a 25% chance of inheriting two copies of the altered gene and having the con- dition, a 50% chance of inheriting only one altered gene copy and being a carrier, and a 25% chance of inheriting two unal- tered genes and thus neither being affected nor being a carrier (Figure 3–4). Remembering that each pregnancy is an indepen- dent event, these probability percentages remain constant with each pregnancy, no matter how many affected or unaffected children a family already has. This is often a difficult concept for parents to grasp, and the nurse should carefully evaluate the parent’s level of understanding of this important detail about inheritance.

The transmission percentages stated previously apply when both parents are carriers of an autosomal recessive condition. Percentages will change if only one parent is a carrier or if a par- ent is homozygous for the condition. The nurse must be able to teach a parent about these simple inheritance percentages.

X-LINKED X-linked conditions are the result of an altered gene on the X chromosome. Examples include hemophilia A and Duch- enne muscular dystrophy. Recall that the sex chromosomes are unevenly represented in males and females. Males, with their sin- gle X chromosome, have just one copy of each gene that resides on the X chromosome. Any altered X gene will consequently be expressed in males, because an unaltered allele is not present for “backup.” Females have two copies of each X gene, and the unaltered gene generally compensates for an altered allele, mak- ing the female a carrier.

Inheritance Risk in X-Linked Conditions. In families with X-linked disorders, a pattern of maternal transmission is seen. Females who are carriers of X-linked conditions have a 50% chance of passing the altered gene to their offspring. Any daugh- ter who receives the altered gene is likely to receive an unaltered X chromosome from her father and therefore be a carrier like

whose ancestors are from malaria-endemic areas are therefore more likely to carry an altered sickle cell gene. See Developing Cultural Competence: Ancestral or Ethnic Groups and Autosomal Recessive Inheritance. Because carrier status usually confers no symptoms, parents are often unaware of their carrier status until they have an affected child.

Figure 3–4 Autosomal recessive pedigree: Both parents are carriers. Statistically, 25% of offspring will be affected, regardless of gender.

= Carrier female

= Affected male

= Affected female

= Carrier male

Developing Cultural Competence Ancestral or Ethnic Groups and Autosomal Recessive Inheritance Because the prevalence of autosomal recessive conditions varies around the globe, certain recessive genetic condi- tions are more common in particular populations. This is why nurses should ask about the country of origin of an individual’s ancestors when collecting a family history. In populations in which individuals tend to marry within their own community or even their own extended family, autosomal recessive conditions are especially common. This is known as the “founder effect.” For example, Ellis- van Creveld syndrome, an inherited condition in which polydactyly (extra fingers) and other structural defects occur, is commonly found among the Old Order Amish population of Pennsylvania (OMIM, 2014).

Examples of disorders that occur more frequently in specific populations are as follows.

Ashkenazi Jewish—Tay-Sachs Disease, Gaucher Disease, Cystic Fibrosis Carrier rates for several autosomal recessive diseases are particularly high in the Ashkenazi (Eastern European) Jewish population. For example, carrier frequency for Tay-Sachs disease and cystic fibrosis are approximately 100 times higher in this group compared to non-Jewish populations. Specific carrier screening is often targeted to individuals of Ashkenazi Jewish descent.

Turkish, Irish, East Asian Populations, Pennsylvania Amish—Phenylketonuria (PKU) Carrier rates as high as 1 in 26 have been found in Turkish populations. The PKU gene is rare in Japanese, Finnish, Ashkenazi Jewish, and African populations (Mitchell, 2013).

Mediterranean (Italians, Greeks), Middle East- ern, Central and Southeast Asian, Indian, Far East, African—b@Thalassemia High gene frequency of b@Thalassemia in these popula- tions is most likely related to selective pressure from malaria. The highest incidences are reported in Cyprus and Sardinia (with 12% to 14% carrier rates) and southeast Asia (Origa, 2015).

Northern European—Cystic Fibrosis (CF) Cystic fibrosis is the most common life-limiting autosomal recessive condition in individuals with Northern European ancestors. Carrier rates among Caucasians in North Amer- ica are about 1:25, compared to 1:65 for African Americans (Strom et al., 2011).

Sub-Saharan African, Mediterranean, Middle Eastern, Indian, Caribbean, and Populations from Parts of Cen- tral and South America—Sickle Cell Disease The prevalence of sickle cell trait is about 10% among African Americans. Approximately one in every 300 to 500 African American infants born in the United States has sickle cell disease (Bender & Seibel, 2014).

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54 Chapter 3

PENETRANCE Penetrance is the probability that a gene will be expressed phe- notypically. It is an “all or none” concept in that a gene is consid- ered to be penetrant if it is expressed to any degree (Lewis, 2015). Penetrance can be measured in the following way. In a certain group of individuals with the same genotype, what percentage of them will exhibit any signs or symptoms of the condition? If the number is less than 100%, then that condition is said to show reduced or incomplete penetrance. For example, both achondropla- sia and Huntington disease exhibit 100% penetrance, because every individual with one copy of the altered gene will exhibit signs and symptoms of the disease.

VARIABLE EXPRESSIVITY The term expressivity is used to describe the degree to which a phenotype is expressed. When people with the same genetic makeup (genotype) exhibit signs or symptoms with varying degrees of severity, the phenotype is described as showing vari- able expression. Variable expression is common in the autosomal dominant condition neurofibromatosis (NF-1). Although neuro- fibromatosis has 100% penetrance, members of the same affected family often exhibit variation in degree of signs or symptoms (Friedman, 2014).

NEW MUTATION When there is no previous family history of a condition, the disease may be caused by a spontaneous new mutation. A new mutation is said to be sporadic, or de novo. Mutation rates have been estimated for a number of inherited disorders and vary widely due to a number of factors, only some of which are under- stood. Diseases with high new mutation rates include neurofibro- matosis type 1, achondroplasia, Duchenne muscular dystrophy, and hemophilia A and B. Determining whether a genetic condi- tion is due to an inherited or a de novo mutation has important implications in calculating a family’s recurrence risk.

ANTICIPATION Anticipation is said to occur when successive generations in a family exhibit earlier onset of symptoms and more severe signs and symptoms of certain diseases. Anticipation occurs in dis- orders characterized by unstable repeat expansions, which are DNA sequences that consist of repeating units of three or more nucleotides, for example CAGCAG . . . CAG. Repeat units have a tendency to expand, or accumulate repeats, during meiosis, especially during spermatogenesis. As a result, the number of repeats tends to increase in successive generations. More than a dozen diseases, most neurologic in nature, result from unstable repeat expansions. These include Huntington disease, fragile X syndrome, and myotonic dystrophy (Schaaf, Zschocke, & Potocki, 2012).

IMPRINTING The expression of a few genetic conditions varies depending on whether the altered gene is inherited from the mother or the father. This differential gene expression is due to genomic imprinting. Imprinting takes place before gametes are formed, when certain genes are chemically marked as having maternal or paternal origin. After conception, the imprint controls gene expression so that only one allele, either maternal or paternal, is expressed. If the unsilenced (active) allele carries a muta- tion, disease may result. A well-studied example of imprinting involves a deletion in a gene on chromosome 15 that causes two very different disorders depending on whether the altered gene comes from the mother or the father. Prader-Willi syndrome, characterized by hypotonia in infancy, excessive eating habits

her mother. Sons of carrier mothers, however, have no backup X chromosome. Therefore, a son who inherits the altered X will display the condition and go on to pass that altered X to each of his daughters, who will then be carriers of the altered gene. A male can never transmit an altered gene on the X chromosome to his sons, because only Y chromosomes are transmitted from fathers to sons (Figure 3–5).

X Inactivation. Early in embryonic life, within a week of fertilization, one of the X chromosomes inherited by females is inactivated. This process results in equalizing the expression of X-linked genes in the two genders. Each female receives an X chromosome from her mother (maternal X) and one from her father (paternal X). The inactivation of either the maternal or paternal X chromosome is random. However, once that X has been inactivated in any given cell, all the cell’s descendants (through mitosis) contain the same inactive X chromosome. Therefore, females are mosaic for X-linked genes; some cells will express genes from the maternal X chromosome, whereas other cells will express genes from the paternal X. Females who inherit altered genes on an X chromosome therefore show variable expression, because the gene alteration will be present in only some cells. Expression of symptoms can vary from extremely mild to a full manifestation of the condition. For example, female carriers of X-linked ocular albinism may have pigment deficien- cies of their iris and ocular fundus (Turnpenny & Ellard, 2012).

Y-LINKED DISORDERS Because the Y chromosome has very few genes, alterations on the Y chromosome are not often associated with health problems. The Y chromosome does contain genes associated with spermato- genesis, and alterations in those genes can cause male infertility (Turnpenny & Ellard, 2012).

Variability in Classic Mendelian Patterns of Inheritance In addition to classic Mendelian inheritance patterns, nurses must be prepared to help families understand several other concepts that affect risk for inheriting a genetic disorder. These concepts include the following common variations in traditional Mendelian patterns of inheritance.

Figure 3–5 X-linked recessive pedigree: The mother is the carrier. Statistically, 50% of male offspring will be affected, and 50% of female offspring will be carriers.

= Affected male

= Carrier female

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Genetic and Genomic Influences 55

affected child is 4%, whereas recurrence risk for pyloric stenosis is as high as 10% (Turnpenny & Ellard, 2012). See Table 3–2.

Collaborative Care Many health professionals work together in the screening, diag- nosis, identification, and treatment of genetic disorders. The goals of collaborative care are early diagnosis through assessment and testing, development of an effective treatment plan combined with psychosocial support to enhance coping, and referral to a genetic specialist when needed.

Diagnostic Procedures Genetic testing is available for both chromosomal and gene-based alterations, and the entire landscape of genetic testing is changing rapidly. New methodologies have not only expanded the num- ber of conditions for which genetic testing is available, but, to an even greater degree, reduced the cost. Increasingly, genetic testing is offered directly to consumers, who receive limited counseling about test results. Patients and families are likely to have limited or incorrect understanding about the types of genetic tests available and what information those tests are able and not able to provide, and they may access unreliable sources for information. Further, interpreting results of genetic testing can be complex. As described later in this chapter, a test for cystic fibrosis may be reported as negative, but the significance of that finding depends on how many of the multiple CF-causing mutations were included in the test. The pediatric nurse needs knowledge of available genetic tests and their implications to assist patients and their families as they weigh choices regarding genetic testing. See Box 3–1.

leading to obesity, and mild-to-moderate intellectual disability, is due to a deletion on chromosome 15 that is inherited from the father. Angelman syndrome is due to a similar deletion in the same gene on chromosome 15, but it is inherited from the mother. The clinical presentation is very different. Individuals with Angelman syndrome have severe intellectual disability, absent speech, an uncoordinated gait, seizures, and a happy, sociable disposition (Schaaf, Zschocke, & Potocki, 2012).

UNIPARENTAL DISOMY In cases of uniparental disomy, the child inherits both copies of a chromosome pair (or homologous parts of a chromosome pair) from the same parent instead of one copy from each par- ent. If there are no altered genes on these chromosomes, the child may not be affected by this event. However, if the chromosomes contain an altered gene for an autosomal recessive disease, the child will receive both altered genes and express the disease. For instance, if a child inherits two altered copies of chromosome 7 from a mother who is a carrier for cystic fibrosis, the child will then exhibit signs and symptoms of cystic fibrosis.

Multifactorial Inheritance Most inherited traits, such as eye and skin color, are polygenic. That is, they occur as a result of variations on several genes. Most diseases and health conditions are polygenic as well, and the expression of those altered genes is often modified by envi- ronmental influences. These are called multifactorial conditions and include many birth defects such as cleft lip and palate, pediatric conditions such as autism and asthma, and adult- onset conditions such as cancer and heart disease. Because the term polygenic does not imply the influence of the environment, the term multifactorial is preferred terminology. The relative con- tribution of genetic and environmental influences varies across disorders.

Multifactorial conditions aggregate in families but do not follow the characteristic Mendelian patterns of inheritance seen with single-gene conditions. Recurrence risk varies among mul- tifactorial conditions, but is usually less than that of Mendelian conditions. Recurrence risk is calculated from population studies and expressed as a percentage; for some disorders, recurrence risk is not easily predicted. Recurrence risk varies according to the number of affected family members, the degree of relation- ship, and sometimes the severity of the defect. As examples, the recurrence risk for cleft lip or cleft palate in a family with one

Box 3–1 What Is a Genetic Test? A genetic test involves the analysis of chromosomes, DNA, RNA, genes, or gene products (e.g., enzymes and other proteins) to detect variations related to disease or health. Whether a laboratory method is considered a genetic test also depends on the intended use, claim, or purpose of a test. For example, amino acid analysis to detect metabolic disor- ders such as PKU is considered a genetic test, but the use of this same analysis to monitor general nutritional status is not (U.S. Department of Health and Human Services, 2008).

Neural tube defects

A neural tube defect (NTD) is a condition that occurs early during fetal development with incomplete closure of the neural tube. Severity of the disorder varies, depending on which part of the tube does not close. Anencephaly, meningomyelocele, and spina bifida are examples of NTD. Recurrence risk is increased in families with an affected child, but that risk can be modified by maternal dietary folic acid supplementation (Turnpenny & Ellard, 2012).

Congenital heart defects

Most congenital heart defects are thought to be of multifactorial cause. A number of genes have been associated with patent ductus arteriosus, atrial or ventricular septal defects, and other heart defects. In some states, newborn screening for critical congenital heart disease is performed routinely using pulse oximetry (Bradshaw & Martin, 2012).

Cleft lip and palate Cleft lip and/or palate (CL/P) occur due to failure of bony fusion early in gestation. While rare gene muta- tions can cause CL/P, most cases are thought to be multifactorial. The more severe the malformation, the higher the family’s recurrence risk is for future pregnancies (Tobias, Connor, & Ferguson-Smith, 2011).

Autism spectrum disorder

Although the etiology of autism spectrum disorder remains poorly understood, most experts believe it to be multifactorial. Twin studies suggest a strong genetic component, with 60% to 90% concordance between identical twins. A number of environmental influences have been suspected to influence the development of autism as well, including environmental exposures, viral infections, and maternal stress (Johnson, Giarelli, Lewis, et al., 2013).

TABLE 3–2 Common Birth Defects and Conditions With a Multifactorial Cause

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56 Chapter 3

DIAGNOSING CHROMOSOMAL ALTERATIONS Cytogenetics describes the microscopic examination of chro- mosomes to reveal large alterations such as additions, dele- tions, breaks, and rearrangements or rejoinings (translocations). Prenatally, amniocentesis and chorionic villi sampling (CVS) can be undertaken to provide specimens for cytogenetic examina- tion. After a child is born, chromosomal diagnostic examination can be accomplished with a blood, skin, or buccal cell sample. Cytogenetic testing includes karyotyping, as described earlier in this chapter, and molecular cytogenetic techniques, which are capable of detecting submicroscopic DNA variations too small to be seen on a karyotype.

DIAGNOSING GENE ALTERATIONS Recent advances in molecular genetic technology along with the mapping of the human genome have resulted in tremendous expansion of available genetic testing. Genetic testing is cur- rently available for more than 4000 disorders, with new tests con- stantly being added (GeneTests, 2015). DNA-based tests involve sophisticated new technology that permits the detection of DNA sequence changes as small as a single nucleotide. These tests can be performed on blood, bone marrow, amniotic fluid, fibroblast cells of the skin, or buccal cells from the mouth. Genetic testing can examine DNA (to determine specific nucleotide sequence), RNA (to measure gene expression), or proteins (to analyze gene products). Some tests can be performed quickly; others require several days to weeks, or occasionally several months, before results are reported. Test results may be delayed because of the complexities of interpreting test data, rather than delays in the laboratory testing itself.

Genes are very long DNA sequences made up of hundreds of thousands of nucleotides (or base pairs). Alterations at various sites along a gene may alter its function and cause disease. As an example, the CFTR gene (which in an altered form causes cys- tic fibrosis) is 230,000 base pairs long, and nearly 2000 different CFTR mutations have been identified (U.S. CF Foundation, 2011). Most of these mutations are exceedingly rare; the most common (named delta F508) is found in about two thirds of affected indi- viduals (Schaaf, Zschocke, & Potocki, 2012). Although DNA testing is capable of detecting any of these alterations in DNA sequence, it is not feasible to test for all of them. Currently avail- able CFTR tests detect up to 98 different mutations; most pan- els test for 23 to 25 mutations. Thus, the chance of missing an uncommon mutation varies, depending on which test is selected. Also, mutation detection rates are higher in patients of European ancestry than other populations. Therefore, a “negative” CF

RECOMMENDATIONS FOR GENETIC TESTING Genetic tests are useful to diagnose disease, predict risk of future disease, inform reproductive decision making, and man- age patient care. Guidelines regarding who should be tested and when to test are available for some genetic conditions. However, new knowledge accumulates rapidly, and recommendations for practice often lag behind research findings by several years.

CATEGORIES OF GENETIC TESTS Genetic tests have been used for some time to detect heritable conditions that are passed from generation to generation. In gen- eral, genetic tests are categorized based on their intended use or purpose and the approach or methodology they utilize. Catego- ries of genetic tests according to their purpose are displayed in Table 3–3. Genetic tests may analyze DNA, products of DNA, or other substances that indicate a genetic defect. DNA itself can be analyzed on a number of levels, from karyotyping an entire set of chromosomes to examining a specific gene for a mutation. Tests of DNA products (RNA or proteins) are sometimes done to measure gene function or expression. Some genetic tests mea- sure metabolites that accumulate when individuals lack a specific enzyme due to a gene mutation.

It is especially important for the pediatric nurse to under- stand the difference between screening tests, which are used in populations to find individuals at risk for a disorder, and diag- nostic tests, which are required to make a diagnosis. Newborn screening is carried out on most newborns in developed coun- tries to identify children who may have a genetic disease such as a metabolic or endocrine disease or hemoglobinopathy. Many of these disorders are exceedingly rare. In recent years, a labo- ratory technique called tandem mass spectrometry has allowed greatly expanded newborn screening with little increase in labo- ratory cost. Issues around expanded newborn screening are of considerable interest, in part due to issues of follow-up. Even the most specific of screening tests will result in false-positive results, which must be followed up with a diagnostic test. The cost of follow-up testing is significant both in terms of paren- tal anxiety and financial burden (DeLuca, Zanni, Bonhomme, et al., 2013). See Chapter 7 for further description of newborn screening.

Diagnostic tests are performed to confirm a diagnosis in a symptomatic child or adult. Diagnostic tests may be ordered when a child is suspected of having a specific disorder based on clinical presentation or screening test results. Sometimes diag- nostic testing is carried out prenatally to identify genetic disease such as a trisomy in a fetus.

TYPE OF TEST DESCRIPTION

Diagnostic testing Used to establish a diagnosis of a genetic disorder in an individual who is symptomatic or has had a positive screening test.

Prenatal testing Testing to identify a fetus with a genetic disease or condition. Some prenatal testing is offered routinely; other testing may be initiated due to family history or maternal factors.

Newborn screening Testing of a newborn to identify babies at risk for a condition that may require immediate initiation of treatment to prevent death or disability.

Preimplantation testing Following in vitro fertilization (IVF), testing to identify embryos with a particular genetic condition.

Carrier testing Testing in an asymptomatic individual to identify carrier status for a genetic condition.

Presymptomatic and predictive testing

Offered usually to asymptomatic individuals to detect genetic conditions that occur later in life. š� Presymptomatic testing detects mutations that, if present, are likely or certain to eventu-

ally cause symptoms (an example is Huntington disease). š� Predictive or predispositional testing detects mutations that increase the likelihood that

symptoms will develop (such as BRCA1 and BRCA2 testing).

TABLE 3–3 Categories of Genetic Tests

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Genetic and Genomic Influences 57

Nursing Management By simply integrating genetic and genomic concepts into assess- ment, observation, and history gathering, the pediatric nurse can improve the standard of care delivered and have a posi- tive impact on the child and family. The pediatric nurse does not need to be a genetic expert, but baseline knowledge and heightened awareness of genetic and genomic issues will sup- port appropriate assessment and referral to genetic specialists as needed.

Family Risk Assessment GENETIC FAMILY HISTORY While gathering a family history, the nurse must look for genetic information that might indicate the need for referral to a genetic specialist. Examples that would indicate a family may benefit from a genetic referral include a family history of conditions known or suspected to be genetic, several family members with the same condition, intellectual disability or learning difficulties, dysmorphic features or congenital anomalies, neonatal or pediat- ric death of unknown cause, recurrent miscarriage, or established genetic carrier status.

PEDIGREES Pediatric nurses and all other health professionals should know how to collect a three-generation family history, record the his- tory in a pedigree, and “think genetic.” Information to document in a family history includes:

š� First name of all family members with age or year of birth š� Any medical conditions or diseases, including age at diagnosis š� Age and cause of death š� Infertility or no children by choice š� Pregnancy complications with gestational age indicated š� Adoption status š� Ancestry š� Consanguinity

test must be interpreted with caution and an eye on how many mutations were included in the test. This is just one of the limita- tions of genetic testing that nurses must understand in order to provide genetically competent care. See The Role of the Nurse in Genetic Testing later in this chapter.

Tests of gene expression are available as well. For example, microarray analysis can detect levels of messenger RNA in cells, which indicates which genes are “turned on” or actively being expressed. Microarray analysis is especially useful to examine tumor cells—for example, to see if an oncogene is being overexpressed and thereby stimulating proliferation of cancer cells.

Other genetic tests examine gene products or metabolites of gene products, rather than the makeup of the gene itself. One example is a biochemical test for PKU. PKU is caused by an alteration in the gene encoding the enzyme phenylalanine hydroxylase (PAH), which breaks down dietary phenylalanine. The PKU test actually measures phenylalanine levels, which are markedly elevated in individuals with PAH deficiency. Many of these biochemical tests have been in use for years.

Quality and Accuracy of Genetic Tests Genetic nurses express concern that genetic tests are becoming available very quickly with little regulation of the companies offering them. The quality, accuracy, and reliability of genetic test results are not measured against any common standard. Of perhaps greater concern is the interpretation of genetic test results. Even if a test per se is accurate and reliable, compa- nies are free to apply their own criteria to interpret the results. Growth in direct-to-consumer marketing of genetic tests has resulted in increasingly accessible and affordable testing with- out the benefit of oversight by a healthcare provider. In most cases, little or no education is provided for the individual undergoing testing, nor is counseling or follow-up uniformly provided. Individuals may make hard and irrevocable life-alter- ing decisions after receiving test results, so accuracy and reli- ability, along with professional counseling, are essential (Beery & Workman, 2012).

Professionalism in Practice ELSI Since its inception, the National Human Genome Research Institute has designated a percentage of its budget to examining the ethical, legal, and social implications (ELSI) of genetic and genomic information. Genetic testing raises many questions that have been addressed by ELSI. Genetic exceptionalism, the idea that genetic information should be treated differently than other health information, continues to be a subject of great interest and little consensus. Pro- ponents of genetic exceptionalism point out that genetic information is unique and deserving of special considera- tion and protection because it is predictive, is potentially stigmatizing, and may reveal information about family members other than the patient undergoing testing. The contrasting view points out that other information is also predictive (consider blood cholesterol and risk for cardio- vascular disease) and stigmatizing (for example, informa- tion about sexually transmitted infections).

Federal health privacy protection, as mandated under the federal Health Insurance Portability and Accountability Act (HIPAA) privacy rule, does not

afford special protection to genetic information, treating it as being no more sensitive than other health-related information. However, by 2008 the majority of states had enacted legislation taking the exceptionalist view, providing protection against discrimination based on genetic information and penalties for violating genetic privacy (U.S. Department of Health and Human Services, 2008). These laws were implemented in response to public concerns that individuals might be reluctant to seek potentially beneficial genetic testing without some guarantee about the confidentiality, privacy, and security of that information. For example, an individual may have health coverage for a genetic test but be unwilling to submit the claim due to concerns about the insurance company “owning” the information in the test result. Federal legislation to prohibit discrimination based on genetic information in health insurance and employment (the Genetic Information Nondiscrimination Act, or GINA) was implemented in November 2009. As a federal law, GINA offers protection to Americans in all states.

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Challenges inherent in recalling the family history include the parents’ inability to remember conditions that have been sur- gically repaired and then forgotten. Parents may fail to report conditions thought not to be genetic or that have been attributed incorrectly to other causes. Also, parents may be reluctant to reveal sensitive information, particularly information unknown to other family members.

Instructions for creating a pedigree from family history infor- mation are beyond the scope of this text but are readily available online. See the National Human Genome Research Institute’s website. Nurses should be able to identify and access resources for pedigree construction for their own use or for families to use. In fact, families are encouraged to collect and record their own family history in a form that can be shared within the family as well as with healthcare providers. The U.S. Surgeon General’s Family History Initiative is a national campaign to promote the collection of family histories. The Initiative provides a web-based program that allows individuals to easily record and save their information, as well as print their family pedigree (http://www. hhs.gov/familyhistory/).

GENETIC PHYSICAL ASSESSMENT The pediatric nurse in any healthcare setting should also “think genetic” when performing physical assessment (see Chapter 5). An early finding by the nurse will provide the child and family with an opportunity for a genetic referral and more specialized health care.

Major and Minor Anomalies Dysmorphology refers to the study of human congenital defects or abnormalities of body structure that begin before birth. Tra- ditionally, congenital anomalies have been included under the umbrella of genetic disorders whether they occur due to a gene alteration or another cause of abnormal embryonic or fetal devel- opment. Dysmorphic anomalies can occur anywhere in the body, but are perhaps most often associated with facial features. As a routine part of patient assessment, the nurse should screen for both minor and major anomalies. A minor anomaly or malforma- tion is an unusual morphologic feature that in itself is of no seri- ous medical or cosmetic concern to the individual or family. The presence of a single minor anomaly is relatively common, occur- ring in approximately 10% of newborns, and is usually of no consequence (Turnpenny & Ellard, 2012). Some minor anomalies

A pedigree is a graphic representation or diagram of a family’s medical history and genetic relationships (Figure 3–6). Standard format, nomenclature, and symbols for pedigrees were adopted in 2008 (Bennett, French, Resta, et al., 2008). A pedigree is constructed around a designated “index” patient, called the proband (if the patient is affected with the genetic disorder of interest) or consultand (if the patient seeks genetic counseling without being known to have the disorder). A finished pedi- gree provides a clear, visual representation of a family’s medical data and biologic relationships at a glance. A pedigree identifies affected individuals in the immediate and extended family and can identify family members who might benefit from a genetic consultation. A pedigree can also illustrate patterns of inheri- tance and clusters of multifactorial conditions. On the basis of the pedigree, risk assessment, genetic referral and/or reproduc- tive risk teaching for the individual and family can occur. The visual nature of a pedigree enhances a family’s learning and can be used to clarify misunderstandings or misconceptions about inheritance. If completed correctly and comprehensively, a pedi- gree allows all healthcare professionals working with the child or family to quickly see what history and background information has been collected.

All registered nurses, regardless of academic prepara- tion, practice setting, role, or specialty, are expected to be able to elicit a three-generation family history and document that information in the form of a pedigree, using standardized sym- bols and terminology (Consensus Panel on Genetic/Genomic Nursing Competencies, 2009). It is important to gather a three- generation family pedigree even if the nurse believes this is a first occasion of the condition within a family. A condition without any identifiable inheritance pattern on the pedi- gree may be due to a new mutation or variable expressivity. Throughout the process of gathering family history assessment data, the nurse must protect family confidentiality at all times. A pedigree is different from a personal health history in that it reflects information about multiple individuals, which greatly increases the risk for harm if confidentiality is broken. A pedi- gree may reveal sensitive details that include infertility prob- lems, reproductive decisions, or incorrectly assigned paternity that may not be known by a current partner or other family members. Other sensitive issues include pregnancies conceived by technology, a history of suicides, drug or alcohol abuse, and same-sex relationships.

Figure 3–6 Sample three-generation pedigree.

1 3 42

2 3 4

Proband Identical twins

5 6

65 7

1 2 43 5 6 7 10

8 9 10 –13

Fraternal twins

8 9

Individual line

Line of descent

Relationship line

Sibship line

III

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Genetic and Genomic Influences 59

should be respected, whether it is to participate in genetic test- ing or to decline. To ensure autonomy, a nondirective approach is critical. Nurses must take care to avoid imposing their own values or personal opinions onto patients and families. Finally, as with all aspects of delivering genetic nursing care, privacy and confidentiality are paramount.

Genetic Testing Issues of Minors In order to support, advocate for, and educate children, adoles- cents, and their families, the pediatric nurse must have knowl- edge of issues related to genetic testing of minor children. Parents may request genetic testing for their minor children without foreseeing the consequences associated with a positive finding. Nurses have a critical role in providing information and anticipatory guidance for families considering genetic testing.

The primary focus of genetic testing in children is to promote the child’s well-being, and guidelines generally recommend that genetic testing in children only be conducted if the results would affect medical management soon after testing. With this in mind, nurses should help families to clearly understand why a genetic test is being done.

In general, four reasons have been suggested to consider genetic testing of minors. The first is if the testing offers an imme- diate medical benefit for the child in terms of disease prevention or early treatment. Newborn screening is an example of testing designed to promote the health of children, and consensus state- ments by several professional groups support mandatory offer- ing of newborn screening for all children (Ross, Saal, David, et al., 2013). Diagnostic genetic testing for children with symptoms of a genetic condition is also broadly supported, because establishing a diagnosis informs health management for the child as well as reproductive decision making by the family. Predictive testing in asymptomatic children for conditions that cause morbidity at a young age or for specific health promotion, screening, or treat- ment is also recommended. An example is familial adenomatous polyposis (FAP). Children with a family history of FAP should be tested for the altered gene, because screening by colonoscopy is recommended for affected individuals during adolescence (Munck, Gargouri, Alberti, et al., 2011). Genetic counseling and informed consent are essential prior to predictive genetic testing in minors (Ross et al., 2013).

are merely family traits or are present in certain ethnic groups. Minor anomalies include such traits as wide-set eyes, single pal- mar creases, café au lait patches, low anterior hairline, preau- ricular (in front of the ears) pits and tags, broad face, or mild proportionate short stature. Examples of variations associated with ethnic origin include upward-slanting eyes or prominent epicanthal folds among individuals of Asian descent.

The appearance of multiple minor anomalies in an infant is of greater concern. Fewer than 1% of newborns have two minor anomalies, and fewer still have three or more. But of those infants who do have multiple minor anomalies, many will also have a major anomaly or an underlying genetic condition. Therefore, the nurse who notes multiple minor anomalies in a newborn or child should consider the possibility of a major anomaly or an under- lying genetic condition and advocate for a genetic referral. For example, a newborn who is hypotonic and has a single palmar crease with up-slanting eyes that do not resemble his parent’s eyes should be evaluated for Down syndrome.

About 2% to 3% of all children have a major anomaly, defined as a serious structural defect present at birth that may have severe medical or cosmetic consequences, interfere with normal functioning of body systems, lead to a lifelong disabil- ity, or even cause an early death. Congenital heart defects, cleft lip and/or palate, myelomeningocele, duodenal atresia, and craniosynostosis are considered major anomalies, as is devel- opmental disability. Some major anomalies are present at birth but are not apparent, such as deafness, various skeletal dyspla- sias, and some types of congenital heart defects (Turnpenny & Ellard, 2012).

A syndrome is a collection of multiple anomalies, major or minor, that occur in a consistent pattern and have a common cause. For example, Down syndrome is the cause of a variety of anomalies that can appear in multiple body systems, includ- ing the eyes, ears, hair, mouth and tongue, heart, and brain. A sequence is a collection of anomalies that occur as a chain of events initiated by a single problem. As an example, Potter sequence begins with prenatal failure of renal development, which leads to small amounts of amniotic fluid, which in turn causes growth restriction. An association is a group of abnor- malities of unknown cause that occur together more often than is expected by chance (Schaaf, Zschocke, & Potocki, 2012).

The nurse can identify clues to genetic problems by examin- ing the child and considering the physical characteristics of the parents and other family members (see Assessment Guide: The Child With Selected Dysmorphic Physical Features). Nurses may even ask to look at family photographs and examine them for common dysmorphic features and family traits. Several standard- ized craniofacial measurements have been defined, and tables are available displaying normal values according to age, so that dys- morphic facial features are more easily identified (Figure 3–7). By advocating for a genetic referral, the pediatric nurse can make a difference in the child’s state of health.

THE ROLE OF THE NURSE IN GENETIC TESTING Many people have misconceptions about genetic testing. Nurses play an important role in teaching parents and children about the implications and limitations of genetic tests to ensure that they make informed decisions. The nurse should promote communi- cation, autonomy, and privacy when helping families. Recogniz- ing that genetic testing affects families, and not just individuals, the nurse should use a family perspective when assisting parents and children who are making decisions about genetic testing. Not all family members will want to know their genetic risks. All voices should be heard, and each family member’s decision

Figure 3–7 Classic facial measurements for genetic assessment with a focus on facial features. A, Outer intercanthal distance. B, Intercanthal distance. C, Interpupillary distance. D, Philtrum length.

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A second kind of situation occurs when an adolescent is fac- ing a reproductive decision of his or her own. If the adolescent has a family history of a genetic condition, the individual might be interested in genetic testing such as carrier screening that offers no specific medical benefit to the adolescent other than family planning. Recall Sarah, the young woman in the opening scenario who wanted to be tested for Huntington disease. Might genetic testing affect her reproductive decisions?

A third situation occurs when a parent or child requests pre- dictive genetic testing for future planning in the absence of any immediate benefit. This situation may arise with inherited adult- onset disorders such as Huntington disease, certain cancers, or familial (early-onset) Alzheimer disease. An older child who has a relative with such a disorder may wish to know whether

he or she carries the altered gene to plan for a life career or to make relationship decisions such as marriage. Parents sometimes request predictive or carrier testing for their children who are well below reproductive age. In the genetics community, there is widespread consensus that predictive genetic testing for minors in the absence of targeted preventive, surveillance, or treatment interventions should be deferred until a child reaches the age of majority (Ross et al., 2013). In most states that age is 18 years.

Finally, a family member may request genetic testing for a child when the test results are entirely for the benefit of another family member, with no direct benefit to the child. This may occur during DNA linkage studies, in which multiple blood samples from both affected and unaffected individuals within a family are analyzed and compared to identify a specific DNA alteration for

Skull Asymmetric head/face Brachycephaly (short, broad head shape) (see Figure 27–11) Craniosynostosis (premature closing of skull sutures) Flattened or prominent occiput

Fontanels too large or small Frontal bossing (prominent central forehead) Microcephaly or macrocephaly Micrognathia (small jaw) Prognathism (projection of jaw beyond that of the forehead)

Extremities Abnormally positioned feet Arachnodactyly (long fingers or toes) Brachydactyly (short fingers or toes) Camptodactyly (permanent flexion of fingers or toes) Clinodactyly (curved fingers or toes, most often the fifth finger) Edema of the hands or feet Extremely long/thin or short extremities

Hypoplastic (very small) or absent nails Hypotonia (diminished muscle tone) Loose joints Polydactyly (extra fingers and/or toes) Rocker bottom feet Single transverse palmar crease (see Figure 5–33) Syndactyly (webbing between fingers and toes)

Ears Ear tags or pits Ears that are posteriorly rotated

Hearing loss Low-set or malformed ears

Hair Excessive body hair Unusual hairline or hair distribution

Large section of white hair in otherwise pigmented hair Sparse or brittle hair

Eyes Blue sclera Different colored eyes Down-slanting eyes Epicanthal folds inconsistent with ethnicity (see Figure 5–7) Extreme hyperopia (farsightedness)

Extreme myopia (nearsightedness) Hypertelorism (widely spaced eyes) Hypotelorism (closely spaced eyes) Short palpebral fissures (distance between inner and outer canthus of eyes) Up-slanting eyes (see Figure 5–8)

Skin Axillary freckling (see Figure 27–12) Café au lait spots (see Figure 27–12) Excessive skin Extremely loose or thin skin

Hirsutism (excessive hair) Hyperelastic skin Leaf-shaped white markings Syndactyly (webbing between fingers and toes)

Mouth Cleft lip with or without cleft palate (see Figure 25–1) Large or small tongue Misshapen, missing, or extra teeth

Early loss of teeth Late eruption of teeth Smooth or abnormal philtrum Thin upper lip

Other Abdominal wall defect Ambiguous genitalia Cryptorchidism (undescended testicle) Hernia (inguinal or umbilical) Hypospadias Hypogonadism Obesity Scoliosis

Seizures Short, webbed neck Single umbilical artery Small or widely spaced nipples Multiple fractures Unusual cry (catlike/mewing, hoarse, weak) Unusually tall or short stature Webbed neck

ASSESSMENT GUIDE The Child With Selected Dysmorphic Physical Features*

*This list is not all-inclusive but is meant to increase the nurse’s awareness of assessment findings that may be significant and require a referral to a genetic specialist.

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a consent process similar to that conducted before an elective medical procedure. Providing informed consent involves more than just presenting a form and asking patients to sign; rather, nurses must ensure patients fully understand both the process of the testing and potential implications (Badzek, Henaghan, Turner, et al., 2012). For example, tests may reveal unexpected genetic alterations unrelated to the indication for which the test was ordered, and the management of such incidental find- ings should be explained during the consent process. The nurse should be aware that health insurance policies may not cover genetic testing, which is often very expensive. Even if the insur- ance benefit will cover the test, and despite protections afforded by law, many individuals are fearful of discrimination based on genetic test results that are included in their medical record. The pediatric nurse should inform the child and the family of their right to know who will have access to the genetic test results.

Ensuring Confidentiality and Privacy for Genetic Testing Issues of confidentiality and privacy are of particular concern when genetic information is involved. Results of genetic tests can be far reaching beyond usual concerns about health informa- tion. Tests may reveal information about other family members who did not consent to testing and who may not want to know (or have other family members know) that information. Current legal protection of genetic information is limited to health insur- ance and employment, but other concerns remain. Can genetic information be released to the courts, military, schools, or adop- tion agencies? Would a child with a known gene alteration for Huntington disease be offered a college scholarship for the best law school? The technology that has made genetic testing pos- sible has far outpaced the ability of health policy makers and legislators to put in place systems to protect genetic information. Not only should nurses be diligent about protecting patients’ genetic information but they should also discuss with patients and families the potential implications when sensitive test results are shared, either intentionally or inadvertently. Such anticipa- tory guidance is a key nursing role in patient advocacy (Con- sensus Panel on Genetic/Genomic Nursing Competencies, 2009).

Psychosocial Issues Pediatric nurses must be prepared to assist children and fami- lies to manage anxiety related to genetic testing. Uncertainty and stress associated with making a decision to undertake genetic testing may extend into weeks or even months before results are available. That stress may be increased or relieved once test results are known. Although receiving favorable test results may decrease anxiety for the family or the individual, problems may occur and the pediatric nurse must be prepared to address them. For example, concerns about carrier status may interfere with development of intimacy and interpersonal relationships. A posi- tive test result may lead to feelings of unworthiness or disturbed self-image. Survivor guilt may affect children with negative results if their siblings test positive. Younger children may blame themselves, thinking they did or said something to cause the gene alteration. The adolescent carrying a gene alteration for a late- onset disease may have an increased tendency for risky behaviors. The adolescent who has inherited an altered disease-producing gene may foster resentment toward the parent who carries the altered gene. Parental guilt may exist for passing the altered gene to the child. Finally, parent–child bonds may be altered if parents become either overprotective or overly permissive. The parent and other family members may unconsciously form lowered expectations for the child or adolescent. Nurses must use coun- seling interventions to assist patients to process, adjust to, and use genetic information.

diagnosing a genetic condition in that particular family. Another example is genetic testing for the purpose of human leukocyte antigen (HLA) matching prior to stem cell donation. Because HLA-matched siblings are often preferred as stem cell donors, parents may request this testing, which offers no clinical benefit for the child but may benefit immediate family members. Such testing is supported by consensus in pediatric and genetic com- munities (Ross et al., 2013).

In recent years, advances in genomic knowledge and increasing availability of genomic testing have blurred the issues around testing in minors. Consider, for example, carrier screen- ing. It is generally agreed that when carrier status is identified on newborn screening, those results should be communicated to the family (Ross et al., 2013). While routine carrier testing when carrier status has no medical relevance during minority is not recommended, carrier screening may be appropriate for adoles- cents under certain circumstances. Examples are sickle cell trait screening for some athletes and carrier screening for adolescents who are pregnant or considering reproduction. Predispositional testing, which can be ordered direct-to-consumer (i.e., without benefit of professional guidance), is also complex. Consider a child who is tested and found to have a genetic predisposi- tion to type 2 diabetes. Typically, the disease risk is moderately elevated—perhaps two to three times the population risk. Does knowledge of that genetic test have immediate medical benefit for the child? Does the potential benefit outweigh any harm that may accompany the knowledge? Issues such as these are of great interest in genomic medicine, but clear guidelines have yet to be established.

The pediatric nurse must be aware of these potential situa- tions and know that decisions to perform genetic tests on chil- dren and adolescents are not made easily. Unless the potential benefits of testing outweigh the potential harms to the child, a genetic test is not justified and should be postponed until the child is capable of making an informed decision. Amidst a rap- idly changing landscape of genomic testing, and recognizing the difficult issues and lack of consensus around genetic testing in children and minors, the genetics community is working to develop standardized practice recommendations to guide clinical decision making (Ross et al., 2013).

Communication with the child and family about genetic testing should include an assessment of the positive and nega- tive outcomes of the test. Are there existing treatments for the condition being tested? What are the potential psychologic issues associated with a positive or negative test? Who will be affected by the test results? Will the test results be shared with extended family members? The nurse has an important role in educat- ing adolescents and parents about issues around genetic testing to ensure that they are making informed decisions. The nurse should also consider the decision-making ability of the child. There is little consensus regarding the age at which children may be able to take part in a decision-making process involving genetic testing, and it is imperative for the nurse to be an advo- cate for the child.

Ensuring Informed Consent for Genetic Testing The pediatric nurse is responsible for alerting children and their families of their right to make an informed decision prior to any genetic testing, with consideration of the special circumstances arising from the family’s social, cultural, and community life. All genetic testing should be voluntary, and it is the nurse’s respon- sibility to ensure that the consent process includes discussion of the risks and benefits of the test, including potential physi- cal or psychological harm or societal injury due to stigmatiza- tion or discrimination. Ross and colleagues (2013) suggest using

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FAMILY PREPARATION FOR GENETIC REFERRALS AND GENETIC COUNSELING Not knowing what to expect from a genetic referral is com- mon, and fear of the unknown may cause anxiety for both the child and family. To facilitate a genetic referral to genetic specialists, the pediatric nurse should educate the child and family so they know what to expect during and after a genetic evaluation.

Usually before the first genetic evaluation visit, the par- ents will be contacted to provide a detailed medical and family history and to make an appointment for genetic consultation. The parent should be prepared to give as exact a family his- tory as possible so that a detailed three-generation pedigree can be constructed. The parents should be informed that a genetic consultation can last several hours. During the appointment, a genetic clinical nurse, genetic counselor, and/or physician will perform an initial interview with the parents and their child. A geneticist will examine the child and possibly the parent(s) in order to establish an accurate diagnosis. Tests may be ordered. These may include chromosome analysis, DNA-based testing, radiographs, biopsy, biochemical tests, developmental testing, or linkage studies.

After the exam and the completion of any applicable test- ing, the geneticist or genetic counselor will discuss the findings with the parents and/or child and make recommendations. The discussion will include the natural history of the condition, its pattern of inheritance, current preventive or treatment options, and risks to the child or family. The visit will include opportuni- ties for questions and answers and assessment and evaluation of the family’s understanding. It is typical for information retention to be very low for a family facing a new genetic diagnosis. This makes it imperative for the nurse to reinforce genetic concepts at a later time when the individual or family is ready.

As the visit concludes, the child and parents can expect that appropriate referrals will be made, available services will be dis- cussed, and a follow-up visit may be scheduled. A summary of the information is usually sent to the family. The child’s health- care provider will receive a report if requested by the individual or parents.

Genetic healthcare providers present the individual and the family with information to promote informed decisions. They are also sensitive to the importance of protecting the individ- ual’s autonomy. A challenge during any visit to a genetic spe- cialist is in providing nondirective counseling. Families should be permitted to make decisions that are not influenced by any biases or values from the nurse, counselor, or geneticist. Many families are accustomed to practitioners and nurses providing direction and guidance in their decision making, and families may be uncomfortable with a nondirectional approach. They might believe that the nurse or healthcare provider is with- holding very bad news. Health professionals should present all indicated options and discuss the positive and negative aspects of each option, employing therapeutic listening and communi- cation skills.

Planning and Implementation The pediatric nurse is responsible for comprehensively deliver- ing the standard of care to children and families, while being aware of limitations of his or her own knowledge and expertise (Consensus Panel on Genetic/Genomic Nursing Competencies, 2009). Although nurses without specialized training and creden- tialing in genetics are not expected to assume the role of genetic professionals, they do have critical roles in providing genomic health care. Often, nurses have more direct patient interaction than other health professionals and maintain a particularly high level of trust with patients. Nurses therefore are well positioned to recognize a patient or family who may be at increased risk for a genetic condition. In general, nurses are expected to (1) integrate genetic and genomic concepts into a comprehensive nursing assessment including documenting that history in the form of a pedigree, (2) recognize significant genomic information in the family history, (3) apply knowledge of local or regional services to explain available genetic services to patients, and (4) facilitate a genetic referral when appropriate (Consensus Panel on Genetic/Genomic Nursing Competencies, 2009; Jacobs & Patch, 2013).

GENETIC REFERRALS AND COUNSELING After gathering assessment data that incorporate genetic con- cepts, the pediatric nurse is able to partner with children and their families by initiating a referral to genetic specialists if there are indicators for a genetic referral (see Clinical Tip). The nurse should provide the family with information about the advan- tages of a referral to a genetic specialist and the disadvantages of not following through with the referral. The nurse should inform the child and family that a genetic referral can provide information and answer questions they may have concerning genetic health. Families should be encouraged to address all their concerns with the genetic specialist, who will be able to answer questions regarding genetic conditions, inheritance, availability of treatment, and economic, insurance, and future implications of genetic conditions. Initiating or facilitating the referral of a child with a suspected genetic problem to a geneticist, genetic clinical nurse specialist, or genetic clinic is an expected nursing responsibility in the same way as referrals to a dietitian or a social worker. When in doubt, the pediatric nurse should contact the advanced practice genetic clinical nurse, genetic counselor, or geneticist to discuss concerns.

Clinical Tip The following are indications for pediatric referral to a genetic specialist: š� If the child or family reports a known or “believed” genetic

condition in the family š� Single major or multiple minor congenital anomalies š� Dysmorphic features that are not familial š� Developmental delay or regression š� A known or suspected metabolic disorder š� Speech problems š� Learning disability š� Failure to thrive š� Delays in physical growth, unusual body proportions, or low

muscle tone š� Abnormal or delayed development of secondary sex charac-

teristics or sex organs

š� Extremely short or tall stature š� Blindness or cataracts in infants or children š� Deafness š� Hypotonia in an infant or child š� Seizures in newborns or infants š� Skin lesions such as café au lait spots

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Genetic and Genomic Influences 63

Another key role for the nurse is to help families with the often difficult task of communicating genetic information such as inheritance patterns to extended family members. Cultural val- ues of autonomy and privacy come into play when a person con- siders whether to communicate genetic information to extended family members who may also carry the altered gene. Family members often have difficulty understanding that some genetic conditions have variable expressivity. Members of the extended family often feel shock and profound guilt upon learning that they carry the gene alteration that has caused their loved one to have a genetic condition.

Managing Care Through Advocacy The pediatric nurse must continually advocate for the child and family and support their decisions even if the decisions contra- dict the nurse’s own ideals and morals. Therefore, careful self- assessment of feelings is essential for nurses to recognize when their own attitudes and values may affect care (Consensus Panel on Genetic/Genomic Nursing Competencies, 2009). Coping with genetic revelations and making genetic-related treatment deci- sions are difficult activities for everyone. The nurse must remem- ber that families will need resources and support and also help in gathering information about reproductive options.

Evaluation Expected outcomes of delivering nursing care with a genetic focus include:

š� The child and family will make informed and voluntary decisions related to genetic health issues.

š� The child and family will accurately identify:

š� Basic genetic concepts and simple inheritance risk probabilities

š� What to expect from a genetic referral š� The influence of genetic factors in health promotion and

health maintenance š� Social, legal, and ethical issues related to genetic testing

Visions for the Future Nurses are often the primary caregivers to whom children and their families turn for information, guidance, and clarification of ideas. Genetic and genomic competency among nurses is essential, not only to provide direct care but also to function as informed members of the community and greater society. As advances in genome science are increasingly translated to health care, the role of nurses not only remains vital but also increases in breadth. For example, the Precision Medicine Initiative, launched in the United States in 2015, aims to tailor health care to people’s unique characteristics, including their personal genome (Collins & Varmus, 2015). Precision medicine will target care, including health promotion and disease prevention plans, pharmacothera- peutics, and cancer treatment, based on each person’s unique genome. Genome-based care is anticipated to expand genetic testing and include new interventions such as gene therapy. As genomic health care becomes the standard of care, the nurse’s role expands not only to delivering that care, but also to explain- ing the care and the implications of care to clients and families. Nurses must acquire foundational understanding of genetic and genomic concepts, maintain currency as genomic discovery is translated to practice, and be ready to discuss trends and changes with children, adolescents, and their families.

FAMILY TEACHING The pediatric nurse must be aware of available genetic resources and participate in education about genetic disorders and health promotion and prevention. Informing children and their families of what to expect from a genetic referral and clarifying and rein- forcing information obtained during a genetic referral or genetic test results are also important.

Cultural and religious beliefs and values of the individual and family must be assessed by the nurse prior to teaching. Gene alterations may be viewed as uncontrollable, as occurring sec- ondary to cultural beliefs such as a stranger looking at the infant, or as a “punishment.” A family’s readiness to learn can be influ- enced by cultural or religious beliefs and values. Obtaining edu- cational materials in the primary language of the child or family will help facilitate the teaching–learning experience.

The nurse must be aware of common inheritance misconcep- tions such as a parent’s belief that with a 25% recurrence risk, after one child is affected the next three children will be unaffected, or with a 50% recurrence risk every other child will be affected. The recurrence risk for each pregnancy should be continually stressed by the nurse. Families often believe that certain family members have inherited a genetic condition because they look like or “take after” a relative with a genetic condition. When new gene altera- tions or mutations are found or even discussed, families will often express surprise. Because no one else in the family has the con- dition, they perceive the trait or condition cannot be inherited. Helping families understand basic, relevant genetic concepts is fundamental to delivering competent genetic nursing care.

Psychosocial Care In order to provide holistic care, the nurse should identify the psychosocial needs and expectations of the child and family, as well as their cultural, spiritual, value, and belief systems. Denial of a genetic diagnosis is common, and nurses must be aware of the family’s state of acceptance. Nurses must often help alle- viate anxiety or guilt in the child or family. Anxiety related to uncertainty is common when awaiting diagnosis or test results, but individuals also experience anxiety from not understand- ing the future implications of a confirmed genetic disease. Guilt may be associated with knowledge of a genetic condition being “in the family.” It is important for the nurse to reassure parents that the genetic condition is not the result of something they did or did not do during pregnancy. The nurse should encourage open discussion and free expression of fears and concerns. Guilt and shame are common as a family deals with the loss of the expectation and dream of a healthy child, grandchild, niece, or nephew. Reinforce to parents that genetic alterations are caused by changes within a gene and not by superstitions related to sin or other cultural beliefs. As mothers, fathers, and extended fam- ily members provide continuous care for the individual with a genetic condition, depression can result. Depression can also occur in the individual with the condition. The nurse must main- tain awareness of the possibility of depression and be proactive in obtaining support for the individual or family. See Chapter 28.

The nurse also is responsible for assessing the family’s coping mechanisms and available family, spiritual, cultural, and commu- nity support systems. The nurse can refer the individual or family to a support group; however, it is important to have permission from the child or family before providing a support group with their names and contact information. Electronic sources of genetic information abound and are unregulated; many of them are pro- prietary, offering expensive genetic testing that may have little scientific basis. Nurses should help families select and evaluate credible websites and online discussion groups.

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64 Chapter 3

Chapter Highlights š� All diseases and health conditions have both genetic and envi-

ronmental influences.

š� Recent advances in genome science are expected to trans- form health care to “precision” care, which applies genomic knowledge about an individual to individualize health care.

š� Nurses are expected to achieve competency in delivering genome-based care.

š� Human DNA is organized into 46 chromosomes—44 autosomes and 2 sex chromosomes, which contain about 21,000 genes.

š� Errors in chromosome number (aneuploidy) or chromosome structure (e.g., deletions) can impair health.

š� Having the correct amount of DNA is critical to health; in most cases, having an extra or a missing chromosome is lethal.

š� Large chromosomal alterations can be seen in a karyotype; very small alterations can be detected using molecular methods.

š� The primary function of the human genome, which contains about 21,000 genes, is to encode proteins that carry out all physiologic functions.

š� Different forms of a gene that occupy the same place on a pair of chromosomes are alleles. Humans normally have two alleles for each gene—one inherited from each parent.

š� More than 99% of DNA sequence (i.e., the order of the A-T-C- G bases) is identical between individuals.

š� Errors or mutations in DNA can disrupt health by encoding faulty proteins that do not function as expected, by causing too much or too little of a protein to be formed, or by causing a protein to be formed at the wrong time during development.

š� When both alleles for particular gene function the same, the individual is said to be homozygous for that gene; if the alleles function differently, the individual is heterozygous for the gene.

š� Single-gene (Mendelian) diseases are typically rare and occur when specific genes are altered; environmental influences usu- ally contribute minimally to the disease process.

š� Complex (multifactorial) diseases and health conditions are com- mon and usually occur when multiple gene alterations collec- tively increase or disease risk; environmental influences usually have significant impact, which can increase risk or be protective.

š� Most DNA is located in the cell nucleus, but mitochondria also have a small amount of DNA that encodes proteins critical to energy production. Mitochondrial DNA is inherited from the mother.

š� Single-gene conditions follow Mendelian patterns of inheri- tance; multifactorial conditions do not.

š� Several types of genetic tests are available and vary in intended use, implications, and limitations.

š� The nurse must be aware of the ethical, social, legal, cultural, and spiritual issues related to the delivery of genetic care.

š� A federal law (GINA) offers special protections regarding genetic information in the areas of health care and employment.

š� A genetic pedigree is a graphic representation of a family’s medical history that is used increasingly as a screening tool to identify people who may be at increased risk for disease.

š� All registered nurses should be able to elicit and depict a three-generation family health history in the form of a genetic pedigree, using standard format, symbols, and terminology.

š� Congenital anomalies may indicate a genetic condition is pres- ent, and nurses should carefully assess newborns and children for dysmorphic features.

š� Nurses have an important role in educating clients about genetic testing, promoting informed decision making, and obtaining informed consent.

š� Genetic testing of minors has particular implications that require careful consideration.

š� Basic genetic nursing involves initiating a referral to genetic specialists.

š� Providing psychosocial support is a critical part of genome- based nursing care.

Recall 16-year-old Sarah from the chapter-opening scenario. While at the sports clinic for a routine physical, she questions the nurse about being tested for Huntington disease. Huntington disease (HD) is a progressive disorder of motor, cognitive, and psychiatric distur- bances. Symptoms typically present between ages 35 and 44 years, with

a median survival time of 15 to 18 years after onset. HD is inher- ited in an autosomal dominant pattern. Sarah’s maternal grand- father died from HD. Sarah has been reading about HD and is

Clinical Reasoning in Action interested in being tested. Her mother strongly objects; she does not want to know her own Huntington status.

Sarah’s mother, Diane, is of western European Caucasian descent. Sarah’s knowledge about her father is limited. She knows that he is a third-generation Filipino American but has no medical information on him or his extended family.

Sarah’s grandmother on her mother’s side has three sis- ters and two brothers. The two brothers died of myocardial infarctions at the ages of 37 and 55 years, respectively. Sarah’s maternal grandfather had no brothers but had two sisters. Her maternal grandfather died at age 62 years of Huntington disease. The sisters are alive and well and have no medical problems.

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Genetic and Genomic Influences 65

Diane has two brothers and two sisters. She is the youngest of the siblings. Her oldest brother, Ken, was diagnosed 10 years ago with Huntington disease at age 41 years. Ken has two daugh- ters ages 21 and 25 years. Sarah is very close to these cousins, and she knows that they have no medical problems beyond sea- sonal allergies and migraine headaches. Diane’s other brother, Brian (age 38 years), has recently had bouts of depression and has noticed slight difficulties in coordination and involuntary move- ments. Brian and his wife, Sally, adopted a son, Dave, with Down syndrome, and he is 19 years old. Sarah’s brother is age 12 years and does not have any medical problems.

1. What further data would you gather from Sarah before referring her to a genetic specialist?

2. What are the signs and symptoms of Huntington disease? The prognosis? Is it linked to any ethnic group?

3. Create a family pedigree for Sarah based on the family infor- mation she has provided. What does the pedigree reveal, and what nursing actions would you plan for Sarah?

4. What are the implications for Sarah’s family if her test is positive for HD? What if her result is negative?

5. Should Sarah be tested at this time? Give a rationale for your answer.

References American Nurses Association (ANA), & International Soci-

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Badzek, L., Henaghan, M., Turner, M., & Monsen, R. (2012). Ethical, legal, and social issues in the transla- tion of genomics into health care. Journal of Nursing Scholarship, 4(1), 15–24.

Beery, T. A., & Workman, M. L. (2012). Genetics and genomics in nursing and health care. Philadelphia, PA: F. A. Davis.

Bender, M. A., & Seibel, G. D. (2014). Sickle cell disease. Retrieved July 25, 2015, from http://www.ncbi.nlm .nih.gov/books/NBK1377/

Bennett, R. L., French, K. S., Resta, R. G., & Doyle, D. L. (2008). Standardized human pedigree nomenclature: Update and assessment of the recommendations of the National Society of Genetic Counselors. Journal of Genetic Counseling, 17(5), 424–433.

Bradshaw, E. A., & Martin, G. R. (2012). Screening for critical congenital heart disease: Advancing detection in the newborn. Current Opinion in Pediatrics, 24(5), 603–608.

Collins, F. S., & Varmus, H. (2015). A new initiative on precision medicine. The New England Journal of Medicine, 372(9), 793–795. doi:10.1056. NEJMp1500523

Consensus Panel on Genetic/Genomic Nursing Compe- tencies. (2009). Essentials of genetic and genomic nursing: Competencies, curricula guidelines, and outcome indicators (2nd ed.). Silver Spring, MD: American Nurses Association.

DeLuca, J., Zanni, K. L., Bonhomme, N., & Kemper, A. R. (2013). Implications of newborn screening for nurses. Journal of Nursing Scholarship, 45(1), 25–33.

Friedman, J. M. (2014). Neurofibromatosis 1. Retrieved from http://www.ncbi.nlm.nih.gov/books/NBK1109/

GeneTests. (2015). Retrieved July 26, 2015, from https:// www.genetests.org/

Green, E. D., Guyer, M. S., & National Human Genome Research Institute. (2011). Charting a course for genomic medicine from base pairs to bedside. Nature, 470(7333), 204–213. doi:10.1038/ nature09764

Jacobs, C., & Patch, C. (2013). Identifying individuals who might benefit from genetic services and informa- tion. Nursing Standard, 28(9), 37–42.

Johnson, N. L., Giarelli, E., Lewis, C., & Rice, C. E. (2013). Genomics and autism spectrum disorder. Journal of Nursing Scholarship, 45(1), 1–10.

Lander, E. S. (2011). Initial impact of the sequencing of the human genome. Nature, 470, 187–197. doi:10.1038/nature09792

Lewis, R. (2015). Human genetics (11th ed.). New York, NY: McGraw Hill Education.

McCarthy, J. J., McLeod, H. L., & Ginsburg, G. S. (2013). Genomic medicine: A decade of suc- cesses, challenges, and opportunities. Science Translational Medicine, 5(189), 1–17. doi:10.1126/ scitranslmed.3005785

Mitchell, J. J. (2013). Phenylalanine hydroxylase defi- ciency. Retrieved July 25, 2015, from http://www .ncbi.nlm.nih.gov/books/NBK1504/

Munck, A., Gargouri, L., Alberti, C., Viala, J., Peuchmaur, M., & Lenaerts, C. (2011). Evaluation of guidelines for management of familial adenomatous polyposis in a multicenter pediatric cohort. Journal of Pediatric Gastroenterology and Nutrition, 53(3), 296–302.

Online Mendelian Inheritance in Man (OMIM®). (2014). Baltimore, MD: Johns Hopkins University. Retrieved from http://omim.org/

Origa, R. (2015). Beta-thalassemia. Retrieved from http://www.ncbi.nlm.nih.gov/books/NBK1426/

Pierce, B. A. (2014). Genetics: A conceptual approach (5th ed.). New York: W. H. Freeman and Company.

Prows, C. A., Hopkin, R. J., Barnoy, S., & Van Riper, M. (2013). An update of childhood genetic disorders. Journal of Nursing Scholarship, 45(1), 34–42.

Ross, L. F., Saal, H. M., David, K. L., Anderson, R. R., American Academy of Pediatrics, & American College of Medical Genetics and Genomics. (2013). Technical report: Ethical and policy issues in genetic testing and screening of children. Genetics in Medicine, 15(3), 234–245.

Schaaf, C. P., Zschocke, J., & Potocki, L. (2012). Human genetics: From molecules to medicine. Baltimore, MD: Lippincott Williams & Wilkins.

Snow, K. (n.d.). People first language. Retrieved from http://www.disabilityisnatural.com/images/PDF/ pfl09.pdf

Strom, C. M., Crossley, B., Buller-Buerkle, A., Jarvis, M., Quan, F., Peng, M., . . . Sun, W. (2011). Cystic fibrosis testing 8 years on: Lessons learned from carrier screening and sequencing analysis. Genetics in Medicine, 13(2), 166–172. doi:strom10.1097/ GIM.0b013e3181fa24c4

The 1000 Genomes Project Consortium. (2012). An integrated map of genetic variation from 1,092 human genomes. Nature, 491, 56–65. doi:10.1038/ nature11632

Tobias, E. S., Connor, M., & Ferguson-Smith, M. (2011). Essential medical genetics (6th ed.). West Sussex, England: Wiley-Blackwell.

Turnpenny, P., & Ellard, S. (2012). Emery’s elements of medical genetics. Philadelphia, PA: Elsevier Churchill Livingstone.

U.S. CF Foundation. (2011). The clinical and functional translation of CFTR (CFTR2). Retrieved July 26, 2015, from http://www.cftr2.org

U.S. Department of Health and Human Services. (2008). United States system of oversight of genetic testing: A response to the charge of the Secretary of Health and Human Services. Report of the Secretary’s Advisory Committee on Genetics, Health, and Society (SACGHS). Retrieved March 15, 2014, from http:// osp.od.nih.gov/sites/default/files/SACGHS_over- sight_report.pdf

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Chapter 4

Growth and Development

Learning Outcomes

4.1 Describe the major theories of development as formulated by Freud, Erikson, Piaget, Kohlberg, social learning theorists, and behaviorists.

4.2 Recognize risks to developmental progression and factors that protect against those risks.

4.3 Plan nursing interventions for children that are appropriate for each child’s developmental state based on theoretical frameworks.

4.4 Explain contemporary developmental approaches such as temperament theory, ecologic theory, and the resilience framework.

4.5 Identify major developmental milestones for infants, toddlers, preschoolers, school-age children, and adolescents.

4.6 Synthesize information from several theoretical approaches to plan assessments of the child’s physical growth and developmental milestones.

4.7 Describe the role of play in the growth and development of children.

4.8 Use data collected during developmental assessments to implement activities that promote development of children and adolescents.

We want to help our adopted daughter Irena grow into a healthy and special child. She had challenges in her short life in Romania that we can only imagine. We worry about how we can help her grow and develop. —Mother of Irena, age 2

Children develop as they interact with their surround-ings. They learn skills at different ages, but the order in which they learn them is universal. Development is affected by factors such as nutrition and cultural practices, as well as the social situation in the country or neighborhood. While each child will develop in a unique manner influenced by genetic makeup, life experiences, and the interactions among these factors, certain principles of development assist parents and the nurse in fostering positive adaptations for the child.

This chapter covers general principles of growth and devel- opment and explores several theories related to childhood devel- opment, as well as their nursing applications. Each age group, from infancy through adolescence, is described in detail. Devel- opmental milestones, physical and cognitive characteristics,

play patterns, and communication strategies are presented, as are conditions that interfere with usual developmental progres- sion. The information provided helps guide developmentally appropriate care for children in each age group and in a variety of situations. These concepts can be applied when caring for all children, including those in special situations.

Principles of Growth and Development It is essential to understand the concepts of growth and devel- opment when learning to care for children. A skilled pediatric nurse integrates knowledge of physical growth and psychosocial

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Growth and Development 67

development into each child healthcare encounter. Growth refers to an increase in physical size. It represents quantitative changes such as height, weight, blood pressure, and number of words in the child’s vocabulary. Development refers to a qualitative increase in capability or function. Developmental skills, such as the ability to sit without support or to throw a ball overhand, unfold in a complex manner influenced by the relationship between the child’s innate capabilities and the stimuli and sup- port provided in the environment. The quantitative and qualita- tive changes in body organ functioning, ability to communicate, and performance of motor skills develop over time and are key components in the process of planning pediatric health care.

Each child displays a unique maturational pattern during the process of development. Although the exact age at which skills emerge differs, the sequence or order of skill performance is uniform among children. Skill development proceeds according to two processes: from the head downward, and from the center of the body outward.

š� Cephalocaudal development (Figure 4–1) proceeds from the head downward through the body and toward the feet. For example, at birth an infant’s head is much larger proportion- ately than the trunk or extremities. Similarly, infants learn to hold up their heads before sitting and to sit before standing. Skills such as walking that involve the legs and feet develop last in infancy.

š� Proximodistal development (see Figure 4–1) proceeds from the center of the body outward toward the extremities. For example, infants are first able to control the trunk, then the arms; only later are fine motor movements of the fingers pos- sible. As the child grows, both physical and cognitive skills differentiate from general to more specific skills. Pediatric nurses use these concepts of predictable and sequential devel- opmental direction to analyze the infant’s and child’s present

Figure 4–1 Cephalocaudal and proximodistal development. In normal cephalocaudal growth, the child gains control of the head and neck before the trunk and limbs. In normal proximodistal growth, the child controls arm movements before hand movements. For example, the child reaches for objects before being able to grasp them. Children gain control of their hands before their fingers; that is, they can hold things with the entire hand before they can pick something up with just their fingers.

Proximodistal growth occurs from the center of the body out.

Cephalocaudal growth occurs from the head down.

state and to partner with parents to plan ways to encourage and support the next emerging developmental abilities.

During the childhood years, extraordinary changes occur in all aspects of development. Physical size, motor skills, cognitive ability, language, sensory ability, and psychosocial patterns all undergo major transformations. Nurses study normal patterns of development to identify children who demonstrate unexpected developmental findings. These assessments can guide the nurse in planning interventions for the child and family, such as refer- ring the child for a diagnostic evaluation or rehabilitation, or teaching the parents how to provide adequate stimulation for the child. Nurses use anticipatory guidance to predict upcoming developmental tasks or needs of a child and to perform appropri- ate teaching related to them. When development is proceeding normally, nurses use their knowledge of these normal patterns to provide approaches based on the child’s cognitive and language ability, to offer appropriate toys and activities during illness, and to respond therapeutically during interactions with the child. See Chapters 7 to 9 for specific application of developmental sur- veillance into health promotion visits. For situations with special challenges, such as in adoptions, additional interventions may be needed (see Growth and Development).

Growth and Development About 15% of annual adoptions in the United States, or over 7000, are international adoptions. China, South Korea, Russia, Ethiopia, Uganda, Ukraine, and Haiti are among the most common countries of origin for orphans being adopted in the United States (U.S. Depart- ment of State, 2015). All adoptions can be stressful for the new parents and child, but international adoptions pose a unique set of circumstances that influence the child’s development.

Parents need to protect themselves and others from infec- tious diseases when traveling to bring home a child from another country. They should consult their local health district and healthcare providers for a list of recommended immunizations for the country they are visiting. They should also obtain a list of medications and supplies to carry for themselves and the child, such as antidiarrheal medicine, decongestants, analgesics, bandages, and hand sanitizer (Children’s Hospital of Philadel- phia, 2012).

Parents require counseling to learn about cultural practices, language, and other differences they may encounter. Once they bring the child home, they will need support as the child grows to integrate the child’s history and culture into their family. The moment when the child meets an adoptive parent may be seen as joyous by the parent but it can be traumatic for the young child, who is being separated from familiar adults. Parents need prepa- ration for establishing trust with the child (Children’s Hospital of Philadelphia, 2012).

The adopted child should be examined once home for length, weight, and head circumference. If growth is delayed, continued monitoring and dietary interventions will be needed. The psycho- socially based problem of avoidant/restrictive food intake disorder (formerly called eating disorder of infancy and childhood or failure to thrive) should also be considered. (See Chapter 14 for a thor- ough discussion of this condition.) Parasitic infection and chronic diseases are possible causes of continuing growth abnormalities. Perform developmental screening to provide a baseline for future developmental observations. Frequent physical and psychosocial assessments will be needed, and teaching is provided for parents to enhance development.

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68 Chapter 4

of the body at certain ages. Unresolved conflict and unmet needs at a certain stage lead to a fixation of development at that stage (Dunn & Craig, 2013).

Freud viewed the personality as a structure with three parts: The id is the basic sexual energy that is present at birth and drives the individual to seek pleasure; the ego is the realistic part of the person, which develops during infancy and searches for acceptable methods of meeting impulses; and the superego is the moral/ethical system, which develops in childhood and contains a set of values and a conscience (Dunn & Craig, 2013). The ego diverts impulses and protects itself from excess anxiety by use of defense mechanisms, including regression to earlier stages and repression or forgetting of painful experiences such as child abuse (Table 4–2).

DEVELOPMENTAL STAGE

AGE GROUP CHARACTERISTICS

Infancy Birth to 12 months

Includes infants or babies up to 1 year of age, all of whom require a high level of care in daily activities.

Toddlerhood 1–3 years Characterized by increased motor ability and indepen- dent behavior.

Preschool 3–6 years The preschooler refines gross and fine motor abil- ity and language skills and often participates in a pre- school learning program.

School age 6–12 years Begins with entry into a school system and is characterized by growing intellectual skills, physical ability, and independence.

Adolescence 12–18 years

Begins with entry into the teen years. Mature cogni- tive thought, formation of identity, and influence of peers are important charac- teristics of adolescence.

TABLE 4–1 Developmental Age Groups Clinical Reasoning International Adoption Counseling Michael and Alyssa had tried for several years to have a biologic child. After an unsuccessful in vitro fertilization, they decided to try to adopt a child. They explored opportu- nities with adoption agencies and learned that international adoption would be possible for them. They adopted 2-year- old Irena from Romania several months ago. Irena appears small for her age, but she seems to be thriving in her new environment. She is learning to say a few English words and is responding appropriately to care and interactions.

Despite thorough investigation of Michael and Alyssa by the adoption agency, they received only scant information about Irena’s history. They were told that she was left at an orphanage by her birth mother when she was about 7 months old; the birth mother stated that the pregnancy and birth were normal. According to reports, the birth mother had decided to relinquish the child because she had two older children to care for and her husband had left home nearly a year before and had not been heard from since.

How can you work with Michael and Alyssa to ensure special attention to Irena’s growth and healthcare needs, such as physical growth, language, and social skills? Con- sider both assessment and planned interventions.

What will Irena’s cultural needs be as she grows older? How can Michael and Alyssa prepare to tell her about her adoption and background someday?

SAFETY ALERT! Although a primary purpose of understanding and monitoring devel- opment is to be able to apply anticipatory guidance so that parents and nurses can provide the child with appropriate toys and experi- ences, there is also a very important link between safety and devel- opment. Developmental knowledge provides information about the major illness and accident risks for each age group as well as pre- ventive techniques. For example, a 6-month-old child should never be left alone on a high surface, preschoolers must be carefully monitored while playing, and teenagers must demonstrate respon- sibility before being allowed to drive. As you read this chapter, try to identify the physical, cognitive, and social reasons that guide the safety precautions to be taken with children of various ages.

Major Theories of Development Child development is a complex process. Many theorists have attempted to organize their observations of behavior into a description of principles or a set of stages. Each theory focuses on a particular facet of development. Most developmental theo- rists separate children into age groups by common characteristics (Table 4–1).

Freud’s Theory of Psychosexual Development THEORETICAL FRAMEWORK Sigmund Freud (1856–1939) was a physician in Vienna, Austria. His work with adults experiencing a variety of neurologic disor- ders led him to develop an approach called psychoanalysis, which explored the driving forces of the unconscious mind. These psy- choanalytic techniques led Freud to believe that early childhood experiences form the unconscious motivation for actions in later life. He believed that sexual energy is centered in specific parts

DEFENSE MECHANISM DEFINITION EXAMPLE

Regression Return to an earlier behavior

A child who has been previously toilet trained becomes incontinent when a new infant is born into the family.

Repression Involuntary forget- ting of uncomfort- able situations

An abused child can- not consciously recall episodes of abuse.

Rationalization An attempt to make unacceptable feel- ings acceptable

A child explains hitting another because “he took my toy.”

Fantasy A creation of the mind to help deal with unacceptable fear

A hospitalized child who is weak pretends to be Superman.

TABLE 4–2 Common Defense Mechanisms Used by Children

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Growth and Development 69

STAGES

Oral (Birth to 1 Year). The infant derives pleasure largely from the mouth, with sucking and eating as primary desires.

Anal (1 to 3 Years). The young child’s pleasure is centered in the anal area, with control over body secretions as a prime force in behavior.

Phallic (3 to 6 Years). Sexual energy becomes centered in the genitalia as the child works out relationships with parents of the same and opposite sexes.

Latency (6 to 12 Years). Sexual energy is at rest in the pas- sage between earlier stages and adolescence.

Genital (12 Years to Adulthood). Mature sexuality is achieved as physical growth is completed and relationships with others occur.

NURSING APPLICATION Freud emphasized the importance of meeting the needs of each stage in order to move successfully into future developmental stages. The crisis of illness can interfere with normal develop- mental processes and add challenges for the nurse striving to meet an ill child’s needs. For example, the importance of sucking in infancy guides the nurse to provide a pacifier for the infant who cannot have oral fluids. The preschool child’s concern about sexuality guides the nurse to provide privacy and clear explana- tions during any procedures involving the genital area. It may be necessary to teach parents that masturbation by the young child is normal and to help parents deal with it through distraction or refocusing. The adolescent’s focus on relationships suggests that the nurse should include questions about significant friends dur- ing history taking. Table 4–3 summarizes techniques the nurse can use to apply these theoretical concepts to the care of children.

Erikson’s Theory of Psychosocial Development THEORETICAL FRAMEWORK Erik Erikson (1902–1994) studied Freud’s theory of psychoanaly- sis under Freud’s daughter, Anna. He later established his own developmental theory, which describes psychosocial stages dur- ing eight periods of human life. Five of Erikson’s eight stages apply to children and are described below. For each stage, Erikson identified a crisis—that is, a particular challenge that exists for healthy personality development to occur (Erikson, 1963, 1968). The word crisis in this context refers to normal maturational social needs rather than to a single critical event. Each developmental crisis has two possible outcomes. When needs are met, the con- sequence is healthy and the individual moves on to future stages with particular strengths. When needs are not met, an unhealthy outcome occurs that will influence future social relationships.

STAGES

Trust Versus Mistrust (Birth to 1 Year). The task of the first year of life is to establish trust in the people providing care. Trust is fostered by provision of food, clean clothing, touch, and comfort. If basic needs are not met, the infant will eventually learn to mistrust others.

Autonomy Versus Shame and Doubt (1 to 3 Years). The toddler’s sense of autonomy or independence is shown by con- trolling body excretions, saying no when asked to do something,

and directing motor activity and play. Children who are consis- tently criticized for expressions of autonomy or for lack of con- trol—for example, during toilet training—will develop a sense of shame about themselves and doubt in their abilities.

Initiative Versus Guilt (3 to 6 Years). The young child initiates new activities and considers new ideas. This interest in exploring the world creates a child who is involved and busy. Constant criticism, on the other hand, leads to feelings of guilt and a lack of purpose.

Industry Versus Inferiority (6 to 12 Years). The middle years of childhood are characterized by development of new interests and by involvement in activities. The child takes pride in accomplishments in sports, school, home, and community. If the child cannot accomplish what is expected, however, the result will be a sense of inferiority.

Identity Versus Role Confusion (12 to 18 Years). In ado- lescence, as the body matures and thought processes become more complex, a new sense of identity, or self, is established. The self, family, peer group, and community are all examined and rede- fined. The adolescent who is unable to establish a meaningful defi- nition of self will experience confusion in one or more roles of life.

NURSING APPLICATION Erikson’s theory is directly applicable to the nursing care of chil- dren. Health promotion and health maintenance visits in the community provide opportunities for helping caregivers meet children’s needs. Parents benefit from learning what the child’s developmental tasks are at each stage and from discussing ideas about how to encourage healthy psychosocial development. Such discussions also may highlight parental concerns and provide a forum for reassurance about normal developmental characteris- tics, such as a child who does not follow through on each activity as a preschooler or tries different hairstyles each month as an adolescent.

The child’s usual support from family, peers, and others is interrupted by hospitalization. The challenge of hospitaliza- tion also adds a situational crisis to the normal developmental crisis a child is experiencing. Although the nurse may meet many of the hospitalized child’s needs, continued parental involvement is necessary both during and after hospitaliza- tion to ensure progression through expected developmental stages (see Table 4–3).

Piaget’s Theory of Cognitive Development THEORETICAL FRAMEWORK Jean Piaget (1896–1980) was a Swiss scientist who wrote detailed observations of the behavior of his own and other children. Based on these observations, Piaget formulated a theory of cognitive (or intellectual) development. He believed that the child’s view of the world is influenced largely by age and maturational ability. Given nurturing experiences, the child’s ability to think matures natu- rally (Ginsberg & Opper, 1988; Piaget, 1972). The child incorpo- rates new experiences via assimilation and changes to deal with these experiences by the process of accommodation. An example of assimilation occurs when the infant uses reflexes to suck on objects that touch the lips. With more experience the infant accom- modates to learn that not all objects are pleasant to suck and cogni- tive structures change to integrate and learn from the experiences.

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70 Chapter 4

AGE GROUP THEORIST/DEVELOPMENTAL STAGE

CHARACTERISTICS OF STAGE NURSING APPLICATIONS

Infant (birth to 1 year)

Freud: Oral stage The baby obtains pleasure and comfort through the mouth.

When a baby is not able to take foods or fluids, offer a pacifier if not contraindicated. After painful procedures, offer a baby a bottle or pacifier or have the mother breastfeed.

Erikson: Trust versus mistrust stage

The baby establishes a sense of trust when basic needs are met.

Hold the hospitalized baby often. Offer comfort after painful procedures. Meet the baby’s needs for food and hygiene. Encourage parents to room in. Manage pain effectively with use of pain medications and other measures.

Piaget: Sensorimotor stage The baby learns from move- ment and sensory input.

Use crib mobiles, manipulative toys, wall murals, and bright colors to provide interesting stimuli and comfort. Use toys to distract the baby during procedures and assessments.

Toddler (1–3 years)

Freud: Anal stage The child derives gratifica- tion from control over body excretions.

Ask about toilet training and the child’s rituals and words for elimination during admission history. Continue child’s normal patterns of elimination in the hospital. Do not begin toilet training during illness or hospitalization. Accept regression in toileting during illness or hospitalization. Have potty chairs available in hospital and childcare centers.

Erikson: Autonomy versus shame and doubt stage

The child is increasingly independent in many spheres of life.

Allow self-feeding opportunities. Encourage child to remove and put on own clothes, brush teeth, or assist with hygiene. (A) If immobilization for a procedure is necessary, proceed quickly, providing explanations and comfort.

Piaget: Sensorimotor stage (end); preoperational stage (beginning)

The child shows increasing curiosity and explorative behav- ior. Language skills improve.

Ensure safe surroundings to allow opportunities to manipulate objects. Name objects and give simple explanations.

Preschooler (3–6 years)

Freud: Phallic stage The child initially identifies with the parent of the oppo- site sex but by the end of this stage identifies with the same-sex parent.

Be alert for children who appear more comfortable with male or female nurses, and attempt to accommodate them. Encourage parental involvement in care. Plan for playtime and offer a variety of materials from which to choose.

Erikson: Initiative versus guilt stage

The child likes to initiate play activities.

Offer medical equipment for play to lessen anxiety about strange objects. (B) Assess children’s concerns as expressed through their drawings. Accept the child’s choices and expressions of feelings.

A B

TABLE 4–3 Nursing Applications of Theories of Freud, Erikson, and Piaget

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Growth and Development 71

AGE GROUP THEORIST/DEVELOPMENTAL STAGE

CHARACTERISTICS OF STAGE NURSING APPLICATIONS

Piaget: Preoperational stage The child is increasingly verbal but has some limitations in thought processes. Causality is often confused, so the child may feel responsible for caus- ing an illness.

Offer explanations about all procedures and treat- ments. Clearly explain that the child is not responsible for causing an illness in self or family member.

School age (6–12 years)

Freud: Latency stage The child places importance on privacy and understand- ing the body.

Provide gowns, covers, and underwear. Knock on door before entering. Explain treatments and procedures.

Erikson: Industry versus inferi- ority stage

The child gains a sense of self-worth from involvement in activities.

Encourage the child to continue schoolwork while hospitalized. Encourage the child to bring favorite pastimes to the hospital. (C) Help the child adjust to limitations on favorite activities.

Piaget: Concrete operational stage

The child is capable of mature thought when allowed to manipulate and see objects.

Give clear instructions about details of treatment. Show the child equipment that will be used in treatment.

Adolescent (12–18 years)

Freud: Genital stage The adolescent’s focus is on genital function and relationships.

Ensure access to gynecologic care for adolescent females and testicular examinations for adolescent males. Provide information on sexuality. Ensure privacy during health care. Have brochures and videos available for teaching about sexuality.

Erikson: Identity versus role confusion stage

The adolescent’s search for self-identity leads to inde- pendence from parents and reliance on peers.

Provide a separate recreation room for teens who are hospitalized. (D) Take health history and perform examinations without parents present. Introduce adolescent to other teens with same health problem.

Piaget: Formal operational stage

The adolescent is capable of mature, abstract thought.

Give clear and complete information about health care and treatments. Offer both written and verbal instructions. Continue to provide education about the disease to the adolescent with a chronic illness, as mature thought now leads to greater understanding.

SOURCE: iStock/Getty Images

SOURCE: Photofusion Picture Library/Alamy

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72 Chapter 4

Cause-and-effect relationships are often unrealistic or a result of magical thinking (the belief that events occur because of thoughts or wishes).

Additional characteristics noted in the thought of preschool- ers include centration, or the ability to consider only one aspect of a situation at a time, and animism, or giving life to inanimate objects because they move, make noise, or have certain other qualities.

Concrete Operational (7 to 11 Years). Transductive rea- soning has given way to a more accurate understanding of cause and effect. The child can reason quite well if concrete objects are used in teaching or experimentation. The concept of conservation (that matter does not change when its form is altered) is learned at this age.

Formal Operational (11 Years to Adulthood). Fully mature intellectual thought has now been attained. The adoles- cent can think abstractly about objects or concepts and consider different alternatives or outcomes.

NURSING APPLICATION Piaget’s theory is essential to pediatric nursing. The nurse must understand a child’s thought processes in order to design stimu- lating activities and meaningful, appropriate teaching plans. What activities could be planned for a hospitalized child based on his or her expected cognitive level? How can cognitive devel- opment be encouraged in a school-age child receiving home health services? Understanding a child’s concept of time sug- gests how far in advance to prepare that child for procedures. Similarly, decisions about offering manipulative toys, reading stories, drawing pictures, or giving the child reading material to explain healthcare measures depend on the child’s cognitive stage of development (see Table 4–3).

Kohlberg’s Theory of Moral Development THEORETICAL FRAMEWORK Lawrence Kohlberg (1927–1987) was a German theorist who used Piaget’s cognitive theory as a basis for his theory of moral development. He presented stories involving moral dilemmas to children and adults and asked them to solve the dilemmas. Kohlberg then analyzed the motives they expressed when mak- ing decisions about the best course to take. Based on the explana- tions given, Kohlberg established three levels of moral reasoning. Although he provided age guidelines, he stated that they are approximate and that many people never reach the highest (post- conventional) stage of development (Santrock, 2012).

STAGES

Preconventional (4 to 7 Years). Decisions are based on the desire to please others and to avoid punishment.

Conventional (7 to 12 Years). Conscience, or an internal set of standards, becomes important. Rules are important and must be followed to please other people and “be good.”

Postconventional (12 Years and Older). The individual has internalized ethical standards on which to base decisions. Social responsibility is recognized. The value in each of two dif- fering moral approaches can be considered and a decision made.

NURSING APPLICATION Decision making is required in many areas of health care. Chil- dren can be assisted to make decisions about health care and to

STAGES

Sensorimotor (Birth to 2 Years). Infants learn about the world by input obtained through the senses and by their motor activity. Six substages are characteristic of this stage.

Use of Reflexes (Birth to 1 Month). The infant begins life with a set of reflexes such as sucking, rooting, and grasping. By using these reflexes, the infant receives stimulation via touch, sound, smell, and vision. The reflexes thus pave the way for the first learning to occur.

Primary Circular Reactions (1 to 4 Months). Once the infant responds reflexively, the pleasure gained from that response causes repetition of the behavior. For example, if a toy grasped reflexively makes noise and is interesting to look at, the infant will grasp it again.

Secondary Circular Reactions (4 to 8 Months). Aware- ness of the environment grows as the infant begins to connect cause and effect. The sounds of bottle preparation will lead to excited behavior. If an object is partially hidden, the infant will attempt to uncover and retrieve it.

Coordination of Secondary Schemes (8 to 12 Months). Intentional behavior is observed as the infant uses learned behav- ior to obtain objects, create sounds, or engage in other pleasurable activities. Object permanence (the knowledge that something continues to exist even when out of sight) begins when the infant remembers where a hidden object is likely to be found; it is no lon- ger “out of sight, out of mind.” However, the concept of object per- manence is not fully developed. The infant knows the parent well, objects to new people, and seems very worried when the parent leaves. Other caretakers may be rejected because the infant does not understand that the parent will return. This phase of “stranger anxiety” is quite common and heralds the infant’s growing recog- nition of and desire to be cared for by the parent.

Tertiary Circular Reactions (12 to 18 Months). Curiosity, experimentation, and exploration dominate as the toddler tries out actions to learn results. At this age, children turn objects in every direction, place them in their mouths, use them for bang- ing, and insert them in containers as they explore their qualities and uses.

Mental Combinations (18 to 24 Months). Language pro- vides a new tool for the toddler to use in understanding the world. Language enables the child to think about events and objects before or after they occur. Object permanence is now fully developed as the child actively searches for objects in various locations and out of view. The child who has had successful sepa- rations from the parents followed by their return, such as hours spent in another’s home or childcare center, begins to understand that the missing parent will return.

Preoperational (2 to 7 Years). The young child thinks by using words as symbols, but logic is not well developed. Two substages characterize this stage.

Preconceptual Substage. During the preconceptual substage (2 to 4 years), vocabulary and comprehension increase greatly but the child is egocentric (i.e., unable to see things from the perspec- tive of another).

Intuitive Substage. In the intuitive substage (4 to 7 years), the child relies on transductive reasoning (drawing conclusions from one general fact to another). For example, when a child disobeys a parent and then falls and breaks an arm that same day, the child may ascribe the broken arm to bad behavior.

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Growth and Development 73

ability to care adequately for their infants are more likely to do so (Bandura, 1997b). See Evidence-Based Practice: Concept of Self-Efficacy for further examples of application of the concept of self-efficacy.

NURSING APPLICATION The importance of modeling behavior can readily be applied in health care. Children are more likely to cooperate if they see adults or other children performing a task willingly. A fright- ened child may watch another child perform vision screening or have blood drawn and then decide to allow the procedure to take place. Contact with positive role models is useful when teaching children and adolescents self-care for chronic dis- eases such as diabetes. Give positive reinforcement for desired performance.

Nurses can use the concept of self-efficacy to increase the chance of success with lifestyle behavior changes. For example, encouraging youth who are trying to quit smoking, providing them with role models, and pointing out parental successes with their children all demonstrate methods of fostering self-efficacy.

Behaviorism THEORETICAL FRAMEWORK John Watson (1878–1958) was an American scientist who applied the research of animal behaviorists, such as Pavlov and Skin- ner, to children. Pavlov and, later, Skinner worked with animals, presenting a stimulus such as food and pairing it with another stimulus such as a ringing bell. Eventually the animal being fed began to salivate when the bell rang. As Skinner and, then, Wat- son began to apply these concepts to children, they showed that behaviors can be elicited by positive reinforcement, such as a food treat, or extinguished by negative reinforcement, such as

consider alternatives when available. Keep in mind that young children may agree to participate in research simply because they want to comply with adults and appear cooperative. Guidelines for child participation in research are available (see Chapter 1).

Parents can be provided with information so that they can assist their children in moral judgments. Encourage talking with a child or adolescent about how a particular decision was made. Parents can then add information and help the child learn to integrate more factors into decision making. Talking about the process is important in helping children progress to higher moral development stages. Focusing on the feelings of others, using positive discipline techniques, and clearly identifying positive and negative behaviors are important.

Social Learning Theory THEORETICAL FRAMEWORK Originally from Canada, psychologist Albert Bandura (1925– ) has conducted research at Stanford University for many years. He believes that children learn attitudes, beliefs, customs, and values through their social contacts with adults and other chil- dren. Children imitate (or model) the behavior they see; if the behavior is positively reinforced, they tend to repeat it. The exter- nal environment and the child’s internal processes are key ele- ments in social learning theory (Bandura, 1986, 1997a).

Bandura believes that an important determinant of behav- ior is self-efficacy, or the expectation that someone can produce a desired outcome. For example, if adolescents believe they can avoid use of drugs or alcohol, they are more likely to do so. A child who has confidence in his or her ability to exercise regularly or lose weight has a greater chance of success with these behavior changes. Parents who have confidence in their

Clinical Question How can nurses use the concept of self-efficacy when plan- ning interventions for children and families?

The Evidence Parental self-efficacy is the belief that parents can manage a range of tasks and situations in caring for their children. Higher self-efficacy scores in parents were predictive of greater suc- cess in treatment of young children who were overweight (Davies, Terhorts, Nakonechny, et al., 2014). The authors of this literature review also established an Internet site to provide information and enhance self-efficacy in parents regarding healthy lifestyles for children (Davies et al., 2014).

Mothers who have a greater degree of self-efficacy about ability to breastfeed are significantly more likely to begin and to continue breastfeeding. A Breastfeeding Self-Efficacy Scale has been developed to identify risk and protective factors that influence the self-efficacy of new mothers. Evaluating breast- feeding self-efficacy in Hispanic women was able to inform the topics for teaching that would best promote breastfeeding (Joshi, Trout, Aguirre, et al., 2014).

An intervention with over 1000 students in grades 5 and 6 was effective in increasing youth self-efficacy regarding

television viewing time and decreasing television viewing time (Salmon et al., 2011).

Best Practice In addition to providing information about health behaviors, nurses need to integrate methods to increase self-efficacy in teaching projects with families. Assessments should be designed to identify self-efficacy of parents and children around health topics of interest. When planning interventions to encour- age health behaviors in children and adolescents, assess the youth’s beliefs that the new behaviors are important and that they can be adopted. Include interventions that demon- strate that others have adopted the health behaviors and plan approaches to enhance the child’s belief in ability to change.

Clinical Reasoning Plan a teaching project about the importance of physical activity and healthy eating for presentation to a group of 12-year-olds. What approaches will enhance the self-efficacy of the children? How would interventions to enhance self-efficacy differ for young elementary school children from those in middle or high school? What theoretical approaches discussed earlier in this chapter help you understand the cognitive abilities of children at various ages and suggest ways to influence their self-efficacy?

EVIDENCE-BASED PRACTICE Concept of Self-Efficacy

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74 Chapter 4

emphasizes the presence of mutual interactions between the child and these various settings or systems. Neither nature nor nurture is considered of more importance. Bronfenbrenner believed each child brings a unique set of genes—as well as specific attributes such as age, gender, health, and other char- acteristics—to his or her interactions with the environment. The child then interacts in many settings at different levels or systems (Figure 4–3).

LEVELS/SYSTEMS

Microsystem. This level is defined as the daily, consistent, close relationships such as home, child care, school, friends, and neighbors. For the child with a chronic illness requiring regular care, the healthcare providers may even be part of the micro- system. In the ecologic model, the child influences each of the settings in the microsystem, in addition to being influenced by them, with reciprocal interactions.

Mesosystem. This level includes relationships of microsys- tems with one another. For example, two microsystems for most children are the home and the school. The relationships between these microsystems are shown by parents’ involvement in their children’s school. This involvement, in turn, influences the effects of the home and school settings on the children.

Exosystem. This level is composed of those settings that influence the child even though the child is not in close daily contact with the system. Examples include the parents’ jobs and the governing board of the local school district. Although the child may not go to the parents’ workplaces, the child can be influenced by policies related to health care, sick leave, inflex- ible work hours, overtime, or travel, or even by the mood of the boss (through its impact on the parent). Likewise, when a local school board votes to ban certain books or to finance a field trip, the child is influenced by these decisions; the child, in turn, can help establish an atmosphere that will guide future school board decisions.

Macrosystem. This level includes the beliefs, values, and behaviors expressed in the child’s environment. Culture is a pow- erful influence in the macrosystem, as is the political system. For instance, a democratic system creates different beliefs, values, and even eating practices than an anarchic system.

Chronosystem. This final level brings the perspective of time to the previous settings. The time period during which the child grows up influences views of health and illness. For example, the experiences of children with influenza in the 19th versus the 20th century were quite different. The age of the parent, child, and other family members also influences views of health.

NURSING APPLICATION Nurses use ecologic theory when they assess the child’s settings to identify influences on development. Table 4–4 provides an assessment tool based on this theory. Interventions are planned to enhance the strengths of the child’s settings and to improve on areas that are not supportive.

Temperament Theory THEORETICAL FRAMEWORK In contrast to behaviorists such as Watson or maturational theo- rists such as Piaget, Stella Chess and Alexander Thomas recog- nize the innate qualities of personality that each individual brings to the events of daily life. They, like Bronfenbrenner, believe the

scolding or withdrawal of attention. Watson believed that he could make a child into anyone he desired—from a professional to a thief or beggar—simply by reinforcing behavior in certain ways (Santrock, 2012).

NURSING APPLICATION Behaviorism has been criticized for being simplistic and for its denial of people’s inherent capacity to respond willfully to events in the environment. However, this theory does have some use in health care. When particular behaviors are desired, healthcare providers can establish positive reinforcement to encourage these behaviors. Using behavioral techniques, nurses may influence the behavior of children by giving a sticker to a child after a physical examination or a blood draw. Parents often use reinforcement in toilet training and other skills learned in childhood.

Ecologic Theory THEORETICAL FRAMEWORK There is controversy among theorists concerning the relative importance of heredity versus environment—or nature versus nurture—in human development. Nature refers to the genetic or hereditary capability of an individual. Nurture refers to the effects of the environment on a person’s performance (Figure 4–2). Piaget believed in the importance of internal cognitive structures that unfold at their appointed times, given any environment that provides basic opportunities. He emphasized the strength of nature. The behaviorist John Watson, on the other hand, believed that behaviors are primarily shaped by environmen- tal responses; he thus stressed the predominance of nurture. Contemporary developmental theories increasingly recognize the interaction of nature and nurture in determining the child’s development.

Urie Bronfenbrenner (1917–2005), a professor at Cornell University, formulated the ecologic theory of development to explain the unique relationship of the child with all of life’s experiences or systems (Bronfenbrenner, 1986, 2005; Bron- fenbrenner, McClelland, Ceci, et al., 1996). Ecologic theory

Figure 4–2 An example of nurturing. Children exposed to pleasant stimulation and who are supported by an adult will develop and refine their skills faster. Group activities such as these provide an opportunity for both motor skill and psychosocial development. Can you identify which skills are being developed?

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Growth and Development 75

Infants generally display clusters of responses, which are clas- sified into three major personality types (Table 4–6). Although most children do not demonstrate all behaviors described for a particular type, they usually show a grouping indicative of one personality type (Chess & Thomas, 1995, 1996, 1999).

Recent research demonstrates that personality character- istics displayed during infancy are often consistent with those seen later in life. Predicting future characteristics is not possible, however, because of the complex and dynamic interaction of per- sonality traits and environmental reactions.

child is an individual who both influences and is influenced by the environment. However, Chess and Thomas focus on one specific aspect of development—the wide spectrum of behaviors possible in children—identifying nine parameters of response to daily events (Table 4–5). Their theory is based on a research study titled the New York Longitudinal Study, which began with infants in 1956 and has continued into the adulthood of these participating individuals. By careful observations of responses to life events, Chess and Thomas identified characteristics of per- sonality that provide the basis for the study on temperament.

Figure 4–3 Bronfenbrenner’s ecologic theory of development views the individual as interacting within five levels or systems. SOURCE: Data from Santrock, J. W. (2007). Life-span development. Madison, WI: Brown & Benchmark. Based on Bronfenbrenner’s (1979, 1986) works in Contexts of child rearing: Problems and prospects. American Psychologist, 34, 844–850; Ecology of the family as a context for human development: Research perspectives. Developmental Psychology, 22, 723–742.

Family

Friends of family

Depression Famine

Values

War

Community centers

Religious group

Health services

Peers

School

Microsystem

Mesosystem

Exosystem

Social welfare services

Macrosystem Attitudes and ideologies

of the culture

Legal services

Medical advances

Laws

Mass media

Parents' workplace

2 2

The information age

Chronosystem Patterning of environmental events

and transitions over the life course of the individual and the historical events of a particular time

Extended family

Legal services

The individual

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76 Chapter 4

NURSING APPLICATION The concept of personality type or temperament is a useful one for nurses. Nurses can assess the temperament of young children and alter the environment to meet their needs. This may involve moving a hospitalized child to a single room to ensure adequate rest if the child is easily stimulated, or allowing a shy child time to become accustomed to new surroundings and equipment before beginning procedures or treatments.

Parents are often relieved to learn about temperament characteristics. They learn to appreciate their children’s quali- ties and to adapt the environment to meet the children’s needs. A burden of guilt can also be lifted from parents who feel that they are responsible for their child’s actions. Parents may be taught ways to enhance goodness of fit between the child’s personality and the environment (Chess & Thomas, 1999) (Table 4–7).

Many other researchers have expanded the work of Chess and Thomas, developing assessment tools for temperament types. The concept of “goodness of fit” is an outgrowth of this theory. Good- ness of fit refers to whether parents’ expectations of their child’s behavior are consistent with the child’s temperament type. There is a “good fit” when the properties of the environment are in accord with the child’s capabilities, characteristics, and style of behav- ior, and when the people in the environment know how to best support the child (The Center for Parenting Education, 2014). For example, an infant who is very active and reacts strongly to verbal stimuli may be unable to sleep well when placed in a room with older siblings. A child who is slow to warm up may not perform well in the first few months at a new school, much to the parents’ disappointment. When parents understand a child’s temperament characteristics, they are better able to shape the environment to meet the child’s needs.

MICROSYSTEMS MESOSYSTEMS EXOSYSTEMS MACROSYSTEMS CHRONOSYSTEMS

Parents Significant others in close contact Childcare arrangements School Neighborhood contacts Clubs Friends, peers Religious community (e.g., churches, synagogues, mosques)

Parents’ involvement in child care or school Parents’ involvement in community Parents’ relationships with significant others (e.g., grandparents, care providers) Influences of religious community (e.g., church, synagogue, mosque) or parents and school

Community centers Local political influences Parents’ work Parents’ friends and activities Social services Health care Libraries

Cultural group membership Beliefs and values of group Political structure

Child’s and parents’ ages Period in historic time

TABLE 4–4 Assessment of Ecologic Systems in Childhood—Bronfenbrenner

PARAMETER DESCRIPTION SCORING

1. Activity level The degree of motion during eating, playing, sleeping, bathing

Scored as high, medium, or low

2. Rhythmicity The regularity of schedule maintained for sleep, hunger, elimination

Scored as regular, variable, or irregular

3. Approach or withdrawal The response to a new stimulus such as a food, activity, or person

Scored as approachable, variable, or withdrawn

4. Adaptability The degree of adaptation to new situations Scored as adaptive, variable, or nonadaptive

5. Threshold of responsiveness The intensity of stimulation needed to elicit a response to sensory input, objects in the environ- ment, or people

Scored as high, medium, or low

6. Intensity of reaction The degree of response to situations Scored as positive, variable, or negative

7. Quality of mood The predominant mood during daily activity and in response to stimuli

Scored as positive, variable, or negative

8. Distractibility The ability of environmental stimuli to interfere with the child’s activity

Scored as distractible, variable, or nondistractible

9. Attention span and persistence The amount of time devoted to activities (compared with other children of the same age) and the degree of ability to stick with an activity in spite of obstacles

Scored as persistent, variable, or nonpersistent

Source: Data from Chess, S., & Thomas, A. (1996). Temperament: Theory and practice. Philadelphia, PA: Brunner/Mazel, Publishers.

TABLE 4–5 Nine Parameters of Personality

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Growth and Development 77

to a new childcare provider. Protective factors could involve past positive experiences with new people, an “easy” tempera- ment, and the new childcare provider ’s awareness of adapta- tion needs of young children to new experiences. Risk factors for a similar child might be repeated moves to new childcare providers, limited close relationships with adults, and a “slow- to-warm-up” temperament.

Once confronted by a stress or crisis, the child and family first experience the adjustment phase, characterized by disor- ganization and unsuccessful attempts at meeting the crisis. In the adaptation phase, the child and family meet the challenge and use resources to deal with the crisis. Adaptation may lead to increasing resilience as well when the child and family learn about new resources and inner strengths and develop the abil- ity to deal more effectively with future crises. Components and examples are described in Table 4–8.

NURSING APPLICATION Nurses gather information about the individual character- istics, prior life experiences, and environmental factors that act as protective and risk factors for children. Table 4–9 lists questions that can be helpful as the nurse gathers information from a child or family members. Nurses then use concepts of resiliency theory in planning interventions for children and families. Nursing strategies can target risk factors, such as encouraging gun safety in families with firearms, and by teaching about use of gun trigger locks and locked gun cabi- nets. In addition, protective factors can be emphasized, such as encouraging holding and verbalization to parents of infants to provide an environment that allows for trust establishment and speech development.

Influences on Development Both nature and nurture are important in determining indi- vidual patterns of development. The interaction of these two forces can explain differences in time frames for acquisition of developmental skills, personality variations between identical twins, and other unique characteristics of individuals. Genetic

Resiliency Theory THEORETICAL FRAMEWORK Why do some children coming from similar backgrounds have such different behavioral outcomes? The resiliency theory examines the individual’s characteristics as well as the interac- tion of these characteristics with the environment. Resilience is the ability to function with healthy responses even when faced with significant stress and adversity (Benard, 2014; Henderson, Benard, & Sharp-Light, 2007). In this model, the individual or family members experience a crisis that provides a source of stress, and the family interprets or deals with the crisis based on resources available. Families and individuals have protec- tive factors, which are characteristics that provide strength and assistance in dealing with crises, and risk factors, which are characteristics that promote or contribute to their challenges (Cairns, Yap, Pilkington, et al., 2014). Risk and protective fac- tors can be identified in children, in their families, and in their communities. (See Chapter 17 for further description of the interplay of social and environmental factors with individual characteristics.) A crisis for a young child might be a transfer

PATTERN DESCRIPTION

% OF N.Y. LONGITUDINAL STUDY PARTICIPANTS

The “easy” child Generally moderate in activity Shows regularity in patterns of eating, sleeping, and elimination Usually positive in mood Adapts to new situations when subjected to new stimuli Able to accept rules Works well with others

Approximately 40%

The “difficult” child Displays irregular schedules for eating, sleeping, and elimination Adapts slowly to new situations and persons Displays a predominantly negative mood Intense reactions to the environment common

Approximately 10%

The “slow-to-warm-up” child

Initial withdrawal, followed by gradual, quiet, slow interaction with the environment Adapts slowly to new situations Mild reactions to environment

Approximately 15%

Mixed Some of each personality type’s characteristics apparent Approximately 35% Source: Chess, S., & Thomas, A. (1995). Temperament in clinical practice. New York, NY: Guilford Press.

TABLE 4–6 Patterns of Temperament

CHILD’S BEHAVIOR PARENTS’ ADAPTATIONS

Extremely active Plan periods of active play several times a day. Have restful periods before bedtime to foster sleep.

Shy Allow time to adapt at own pace to new people and situations.

Easily stimulated Have quiet room for sleeping for an infant. Have quiet room for homework for a school-age child.

Short attention span Provide projects that can be completed in a short period. Gradually encourage longer periods at activities.

TABLE 4–7 Ways to Improve Goodness of Fit Between Parents and Child

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78 Chapter 4

and environmental factors interact and contribute to individual differences in rates and outcomes of child development.

Genetic inheritance plays an important part in the child’s potential and the unfolding of developmental milestones. See Chapter 3 for a description of chromosomes and genes. Every chromosome carries many genes that determine physical charac- teristics, intellectual potential, personality type, and other traits. Children are born with the potential for certain features; how- ever, their interaction with the environment influences how and to what extent particular traits are manifested.

Some Asian cultures calculate age from the time of con- ception. This practice acknowledges the profound influence of the prenatal period. The mother ’s nutrition and general state of health play a part in pregnancy outcome. Poor nutrition can lead to small infants and infants with compromised neurologic performance, slow development, or impaired immune status with resultant high disease rates. Low maternal stores of iron can result in anemia in the infant (American Academy of Pedi- atrics, 2013). Maternal smoking is associated with low-birth- weight infants. Ingestion of alcoholic beverages, including beer and wine, during pregnancy may lead to fetal alcohol syndrome (Figure 4–4). Illicit drug use by the mother may result in neonatal addiction, convulsions, hyperirritability, poor social responsive- ness, and other neurologic disturbances.

Even prescription or over-the-counter drugs may adversely affect the fetus. This was brought to general attention with the drug thalidomide, which was commonly used in Europe to treat nausea during the 1950s. This drug resulted in the birth of infants with limb abnormalities to women who used the drug during pregnancy. Differences in physiology related to gastric empty- ing, renal clearance, drug distribution, and other factors contrib- ute to variations in pharmacokinetics during pregnancy. Drugs can cause teratogenesis (abnormal development of the fetus) or mutagenesis (permanent changes in the fetus’s genetic mate- rial). Certain drugs can cause bleeding, stained teeth, impaired hearing, or other developmental effects. The U.S. Food and Drug Administration (FDA) has established risk categories for drugs in pregnancy.

Some maternal illnesses are harmful to the developing fetus. An example is rubella (German measles), which is rarely a serious disease for adults but can cause deafness, vision defects, heart defects, and intellectual disability in the fetus if it is acquired by a pregnant woman. A fetus can also acquire diseases such as acquired immunodeficiency syndrome (AIDS)/human immuno- deficiency virus (HIV) infection or hepatitis B from the mother.

COMPONENT EXAMPLE OF INTERVENTIONS

Provide caring and support. Listen to concerns. Provide information based on developmental level.

Set and communicate high expectations.

Express confidence in child’s ability to succeed. Provide youth and families with resources.

Provide opportunities for meaningful participation.

Facilitate the youth’s problem solving about ways to improve situations.

Increase prosocial bonding. Assist youth to work with oth- ers on positive, purposeful activities. Facilitate community participation.

Set and communicate high expectations.

Communicate rules and establish routines. Assist families in setting clear expectations for behaviors and consequences.

Teach life skills. Encourage communication of thoughts and feelings. Facilitate critical thinking and problem solving skills.

Source: Adapted from Resiliency in Action. (2014). The resiliency wheel. Retrieved from http:// www.resiliency.com/free-articles-resources/crisis-response-and-the-resiliency-wheel/

TABLE 4–8 Components of Intervention in the Resiliency Wheel

CATEGORY QUESTIONS

To determine risk factors, ask:

š� Describe the event that occurred and what it has been like for your family.

š� What other stressors do you have in your family right now?

š� Are there financial worries?

š� Are there things you think and worry about late at night?

š� Describe your job, your friends.

š� What is a typical day like?

š� Describe your neighborhood. š� Do you have friends, people to call

in emergencies?

To determine pro- tective factors, ask:

š� What gives you strength?

š� How do you deal with this stress?

š� What do you think you do well in your family?

š� Who do you call when you need help?

š� Do you have a computer? Internet access?

š� Are you religious? Spiritual?

š� Do you exercise regularly? š� How do you spend free time?

TABLE 4–9 Assessment Questions to Determine Resilience Capability

Figure 4–4 A child with fetal alcohol syndrome. SOURCE: Rick’s Photography/Shutterstock.

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Another factor that influences child development is that of culture. The traditional customs of the many cultural groups represented in North American society influence the

development of the children in these groups. Foods commonly eaten vary among people with different cultural backgrounds and influence the incidence of health problems such as car- diovascular disease in these groups. The Native American practice of carrying infants on boards often delays walk- ing when measured against the norm for walking on some developmental tests. Children who are carried by straddling the mother ’s hips or back for extended periods have a low incidence of developmental dysplasia of the hip since this keeps their hips in an abducted position. It is important for nurses to take cultural practices into account when perform- ing developmental screening; some tests may not be culturally sensitive and can inaccurately label a child as delayed when the pattern of development is simply different in the group, perhaps due to childrearing practices in the family. In addi- tion, certain ethnic or racial groups are more prone to develop certain diseases due to genetic variations. Examples include Hispanics, who have a high incidence of diabetes; African Americans, who more commonly have sickle cell disease; and Northern European Americans, who have a higher incidence of phenylketonuria.

All cultural groups have rules regarding patterns of social interaction. Schedules of language acquisition are deter- mined by the number of languages spoken and the amount of speech in the home. The particular social roles assumed by men and women in the culture affect school activities and ulti- mately career choices. Attitudes toward touching and other methods of encouraging developmental skills vary among cultures.Chapter 10 includes further descriptions of other factors that influence child development such as school and child care, community services, and additional community and family factors.

Infant (Birth to 1 Year) Imagine the experience of tripling body weight in 1 year, or becoming proficient in understanding fundamental words in a new language and even speaking a few. These and many more accomplishments take place in the first year of life. Starting the year as a mainly reflexive creature, the infant can walk and com- municate by the year’s end. Never again in life is development so rapid and profound.

Physical Growth and Development The first year of life is one of rapid change for the infant. The birth weight usually doubles by about 5 months and triples by the end of the first year (Figure 4–5). Height increases by about a foot during this year. Teeth begin to erupt at about 6 months, and by the end of the first year, the infant has six to eight deciduous teeth (see Chapter 5). Physical growth is closely associated with type and quality of feeding. (See Chapter 14 for a discussion of nutrition in infancy.)

Body organs and systems, although not fully mature at age 1 year, function differently from what they did at birth. Kidney and liver maturation helps the 1-year-old excrete drugs or other toxic substances more readily than in the first weeks of life. The changing body proportions mirror changes in developing inter- nal organs. Maturation of the nervous system is demonstrated by increased control over body movements with growing differ- entiation from general to specific skills, thus enabling the infant to sit, stand, and walk. Sensory function also increases as the infant begins to discriminate visual images, sounds, and tastes (Table 4–10).

Radiation, chemicals, and other environmental hazards may adversely affect a fetus when the mother is exposed to any of these influences during her pregnancy. The best outcomes for infants occur when mothers eat well; exercise regularly; seek early prena- tal care; refrain from use of drugs, alcohol, tobacco, and excessive caffeine; and follow general principles of good health.

As we have seen, both nature and nurture are important in determining individual patterns of development. These two forces interact in unique ways in each individual, explaining dif- ferences in time frames for acquisition of developmental skills among children, personality variations between identical twins, and other unique characteristics of individuals. An environ- mental factor that is extremely important in the development of children is the profile of family characteristics. The family is an important component in the lives of all children and plays an essential role in fostering the development of youth. A signifi- cant concept in families is that of parenting. How children are parented interacts with their individual characteristics to influ- ence risk and protective factors, personality characteristics, and developmental outcomes. The families into which children are born influence them profoundly. Children are supported in dif- ferent ways and acquire different worldviews depending on such factors as whether one or both parents work, how many siblings are present, and whether an extended family is close by. Note should be made of variations in family structure such as single parent, homosexual parents, extended family, and stepparents. Foster parenting and movement of children into a number of fos- ter homes during childhood influences children’s self-esteem and the ability to perform at potential. How might a nontraditional “family” setting, such as an adoptive or foster home, influence a child’s development?

Professionalism in Practice Foster Care On a given day, about 400,000 U.S. children are in foster care, with the average time in such care being nearly 2 years (U.S. Department of Health and Human Services, 2013). Each state is responsible for establishing the stand- ards of education, environmental provision, and other factors of foster homes. The Office of Data, Analysis, Research and Evaluation of the Administration on Chil- dren, Youth and Families (ACYF) maintains information about foster care in the United States through the Adop- tion and Foster Care Analysis and Reporting System (AFCARS). The Foster Care Independence Act of 1999 fosters youth who are becoming too old for the foster care system to achieve self-sufficiency. The U.S. Education and Training Voucher Program helps youth to obtain college or vocational training at a free or reduced cost.

Nurses should recognize that children who are in foster care may have experienced family situations that were challenging or traumatic, and can be dealing with new living situations. Carefully assess the stress, adaptation, and risk and protective factors in children who are living in foster homes. Evaluate proximity to siblings and other family members as well as expectations for return to the primary family or adoption options. Support foster families so that they can provide the care needed for their foster children.

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function. The newborn’s eyes widen in response to sound; the 1-year-old turns to the sound and recognizes its significance. The 2-month-old cries and coos; the 1-year-old says a few words and understands many more. The 6-week-old grasps a rattle for the first time; the 1-year-old reaches for toys and feeds self.

The infant’s behaviors provide clues about thought pro- cesses. Piaget’s work outlines the infant’s actions in a set of

Cognitive Development The brain continues to increase in complexity during the first year. Most of the growth involves maturation of cells, with only a small increase in number of cells. This growth of the brain is accompanied by development of its functions. One only has to compare the behavior of an infant shortly after birth with that of a 1-year-old to understand the incredible maturation of brain

Figure 4–5 Body proportions at various ages.

3 mo. fetus Newborn 2 yr 5 yr 13 yr Adult

AGE PHYSICAL GROWTH FINE MOTOR ABILITY GROSS MOTOR ABILITY SENSORY ABILITY

Birth to 1 month

Gains 140–200 g (5–7 oz)/week Grows 1.5 cm (1/2 in.) in first month Head circumference increases 1.5 cm (1/2 in.)/month

Holds hand in fist (A) Draws arms and legs to body when crying

Inborn reflexes such as startle and rooting are predominant activity May lift head briefly if prone (B) Alerts to high-pitched voices Comforts with touch (C)

Prefers to look at faces and black- and-white geometric designs Follows objects in line of vision (D)

TABLE 4–10 Physical Growth and Development Milestones During Infancy

B May lift head

A Holds hand in fist

D Follows objectsC Comforts with touch Kenishirotie/Shutterstock Dora Zett/Shutterstock Vanessa Davis/DK Images

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AGE PHYSICAL GROWTH FINE MOTOR ABILITY GROSS MOTOR ABILITY SENSORY ABILITY

2–4 months Gains 140–200 g (5–7 oz)/week Grows 1.5 cm (1/2 in.)/month Head circumference increases 1.5 cm (1/2 in.)/month Posterior fontanelle closes Ingests 120 mL/kg/24 hr (2 oz/ lb/24 hr)

Holds rattle and other objects when placed in hand (E ) Looks at and plays with own fingers Brings hands to midline

Moro reflex fading in strength Can turn from side to back and then return (F ) Decrease in head lag when pulled to sitting position; sits with head held in midline with some bobbing When prone, holds head and supports weight on forearms (G)

Follows objects 180 degrees Turns head to look for voices and sounds

E Holds rattle and other objects

4–6 months Gains 140–200 g (5–7 oz)/week Doubles birth weight at 5–6 months Grows 1.5 cm (1/2 in.)/month Head circumference increases 1.5 cm (1/2 in.)/month Teeth may begin erupting by 6 months Ingests 100 mL/kg/24 hr (1 1/2 oz/lb/24 hr)

Grasps rattles and other objects at will; drops them to pick up another offered object (H ) Mouths objects Holds feet and pulls to mouth Holds bottle Grasps with whole hand (palmar grasp) Manipulates objects (I )

Head held steady when sitting No head lag when pulled to sitting Turns from abdomen to back by 4 months and then back to abdomen by 6 months When held standing supports much of own weight (J )

Examines complex visual images Watches the course of a falling object

(continued)

G Holds head up and supports weight with armsF Can turn from side to back Vanessa Davis/DK Images Vanessa Davis/DK Images

I Manipulates objects J Supports most of weight when held standing

H Grasps objects at will Vanessa Davis/DK ImagesStockLite/Shutterstock

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82 Chapter 4

AGE PHYSICAL GROWTH FINE MOTOR ABILITY GROSS MOTOR ABILITY SENSORY ABILITY

6–8 months Gains 85–140 g (3–5 oz)/week Grows 1 cm (3/8 in.)/month Growth rate slower than first 6 months

Bangs objects held in hands Transfers objects from one hand to the other Beginning pincer grasp at times

Most inborn reflexes extinguished Sits alone steadily without sup- port by 8 months (K ) Likes to bounce on legs when held in standing position

Responds readily to sounds Recognizes own name and responds by look- ing and smiling Enjoys small and com- plex objects at play

K Sits alone without support

8–10 months Gains 85–140 g (3–5 oz)/week Grows 1 cm (3/8 in.)/month

Picks up small objects (L) Uses pincer grasp well (M )

Crawls or pulls whole body along floor by arms (N) Creeps by using hands and knees to keep trunk off floor Pulls self to standing and sitting by 10 months Recovers balance when sitting

Understands words such as “no” and “cracker” May say one word in addition to “mama” and “dada”

TABLE 4–10 Physical Growth and Development Milestones During Infancy (continued)

Ruth Jenkinson/DK Images

N Crawls or pulls body by armsM Uses pincer grasp well

Vanessa Davis/DK Images

L Picks up small objects

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Toward the end of the first year, the infant’s ability to move in space enlarges the sphere of play (Table 4–11). The infant who has begun crawling or walking can get to new places, find new toys, discover forgotten objects, or seek out other people for inter- action. Play is a reflection of every aspect of development, as well as a method for enhancing learning and maturation.

PERSONALITY AND TEMPERAMENT Why does one infant frequently awaken at night crying while another sleeps for 8 to 10 hours undisturbed? Why does one infant smile much of the time and react positively to interac- tions while another is withdrawn with unfamiliar people and frequently frowns and cries? Such differences in responses to the environment are believed to be inborn characteristics of tempera- ment. Infants are born with a tendency to react in certain ways to noise and to interact differently with people. They may display varying degrees of regularity in activities of eating and sleeping, and manifest a capacity for concentrating on tasks for different amounts of time.

Nursing assessment identifies personality characteristics of the infant that the nurse can share with the parents. With this information the parents can appreciate more fully the unique- ness of their infant and design experiences to meet the infant’s needs. Parents can learn to modify the environment to promote adaptation. For example, an infant who does not adapt easily to new situations may cry, withdraw, or develop another way of coping when adjusting to new people or places. Parents might be advised to use one or two babysitters rather than engaging new sitters frequently. If the infant is easily distracted when eating, parents can feed the infant in a quiet setting to encourage a focus on eating. Although the infant’s temperament is unchanged, the ability to fit with the environment is enhanced. See Chapter 7 for further application of this information to health promotion of the infant.

rapidly progressing changes in the first year of life. The infant receives stimulation through sight, sound, and feeling, which the maturing brain interprets. This input from the environment interacts with internal cognitive abilities to enhance cognitive functioning.

Psychosocial Development PLAY An 8-month-old infant is sitting on the floor, grasping blocks and banging them on the floor. Infants spend much of their time engag- ing in solitary play, or playing by themselves. When a parent walks by, the infant laughs and waves hands and feet wildly. Phys- ical capabilities enable the infant to move toward and reach out for objects of interest. Cognitive ability is reflected in manipulation of blocks to create different sounds. Social interaction enhances play. The presence of a parent or other person increases interest in sur- roundings and teaches the infant different ways to play.

The play of infants begins in a reflexive manner. When an infant moves extremities or grasps objects, the foundations of play are established. The feel and sound of these activities give pleasure to the infant, who gradually performs them purpose- fully. For example, when a parent places a rattle in the hand of a 6-week-old infant, the infant grasps it reflexively. As the hands move randomly, the rattle makes an enjoyable sound. The infant learns to move the rattle to create the sound and then finally to grasp the rattle at will to play with it.

The next phase of infant play focuses on manipulative behav- ior. The infant examines toys closely, looking at them, touching them, and placing them in the mouth. The infant learns a great deal about texture, qualities of objects, and all aspects of the sur- roundings. At the same time, interaction with others becomes an important part of play. The social nature of play is obvious as the infant plays with other children and adults.

AGE PHYSICAL GROWTH FINE MOTOR ABILITY GROSS MOTOR ABILITY SENSORY ABILITY

10–12 months Gains 85–140 g (3–5 oz)/week Grows 1 cm (3/8 in.)/month Head circumference equals chest circumference Triples birth weight by 1 year

May hold crayon or pencil and make mark on paper Places objects into containers through holes (O)

Stands alone (P) Walks holding onto furniture Sits down from standing (Q)

Plays peek-a-boo and patty cake

O Places objects in container through holes

P Stands alone Q Sits down from standing

Vanessa Davis/DK Images Victoria Blackie/DK Images

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84 Chapter 4

words. Hospital nurses should include the infant’s known words when providing care.

COMMUNICATION Even at a few weeks of age, infants communicate and engage in two-way interaction. Comfort is expressed by soft sounds, cud- dling, and eye contact. The infant displays discomfort by thrash- ing the extremities, arching the back, and crying vigorously. From these rudimentary skills, communication ability continues to develop until the infant speaks several words at the end of the first year of life (Table 4–11).

Nurses assess communication to identify possible abnor- malities or developmental delays. Infants understand (receptive speech) more words than they can speak (expressive speech). Abnormalities may be caused by a hearing deficit, developmen- tal delay, or lack of verbal stimulation from caretakers. Children in families with multiple languages speak in each language.

Nursing interventions focus on providing a stimulating environment. Encourage parents to speak to infants and teach

AGE PLAY AND TOYS COMMUNICATION

Birth–3 months Prefers visual stimuli of mobiles, black-and- white patterns, mirrors Auditory stimuli are music boxes, tape players, soft voices Responds to rocking and cuddling Moves legs and arms while adult sings and talks Likes varying stimuli—different rooms, sounds, visual images

Coos Babbles Cries

3–6 months Prefers noise-making objects that are easily grasped like rattles Enjoys stuffed animals and soft toys with contrasting colors

Vocalizes during play and with familiar people Laughs

6–9 months Likes teething toys Increasingly desires social interaction with adults and other children Soft toys that can be manipulated and mouthed are favorites

Cries less Squeals and makes pleasure sounds Babbles multisyllabically (mamamamama) Increases vowel and consonant sounds Links syllables together Uses speechlike rhythm when vocalizing with others

9–12 months Enjoys large blocks, toys that pop apart and go back together, nesting cups and other objects Laughs at surprise toys like jack-in-the-box Plays interactive games like peek-a-boo Uses push-and-pull toys

Understands “no” and other simple commands Says “dada” and “mama” to identify parents Learns one or two other words Receptive speech surpasses expressive speech

TABLE 4–11 Psychosocial Development During Infancy

Growth and Development Strategies for communicating with infants include the following:

š� Hold for feedings. š� Hold, rock, and talk to infant often. š� Talk and sing frequently during care. š� Tell names of objects. š� Use high-pitched voice with newborns. š� When the infant is upset, swaddle and hold securely.

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the birth weight has usually quadrupled and the child is about one half of the adult height. Body proportions begin to change, with the legs longer and the head smaller in proportion to body size than during infancy (see Figure 4–5). The toddler has a pot-bellied appearance and stands with feet apart to provide a wide base of support. By approximately 33 months, eruption of deciduous teeth is complete, with 20 teeth being present.

Gross motor activity develops rapidly (Table 4–12) as the toddler progresses from walking to running, kicking, and riding a Big Wheel tricycle (Figure 4–6). As physical maturation occurs, the toddler develops the ability to control elimination patterns (see Growth and Development and Developing Cultural Competence: Childrearing Practices).

Toddler (1 to 3 Years) Toddlerhood is sometimes called the first adolescence. An infant only months before, the child from 1 to 3 years is now displaying independence and negativism. Pride in newfound accomplish- ments emerges.

Physical Growth and Development The rate of growth slows during the second year of life. Parents may become concerned because the child has a limited food intake. They may need reassurance that this is normal. (See Chapter 14 for further discussion of nutrition in toddlerhood.) By age 2 years,

AGE PHYSICAL GROWTH FINE MOTOR ABILITY GROSS MOTOR ABILITY SENSORY ABILITY

1–2 years Gains 227 g (8 oz) or more per month Grows 9–12 cm (3.5–5 in.) during this year Anterior fontanelle closes

By end of second year, builds a tower of four blocks (A) Scribbles on paper (B) Can undress self (C) Throws a ball

Runs Shows growing ability to walk and finally walks with ease Walks up and down stairs a few months after learning to walk with ease (E) Likes push-and-pull toys (F)

Visual acuity 20/50

2–3 years Gains 1.4–2.3 kg (3–5 lb)/year Grows 5–6.5 cm (2–2.5 in.)/year

Draws a circle and other rudi- mentary forms Learns to pour Learning to dress self (D)

Jumps Kicks ball Throws ball overhand

A Builds tower of four blocks

Fernando Cortes/Shutterstock

TABLE 4–12 Physical Growth and Development Milestones During Toddlerhood

B Scribbles on paper

C Can undress self

D Learning to dress self E Walks up and down stairs F Likes push-and-pull toys

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Developing Cultural Competence Childrearing Practices In traditional Native American families, children are allowed to unfold and develop naturally at their own pace. Children thus wean and toilet train themselves with little interference or pressure from parents. In other groups, toilet training is accomplished at an early age. The nurse should be sensitive to the childrearing practices of the family and support them in these culturally accepted practices, rather than imposing a more structured approach to toilet training.

Figure 4–6 Gross motor activity. This toddler has learned to ride a Big Wheel, which he is doing right into the street. Toddlers must be closely watched to prevent injury.

Growth and Development Strategies for toilet training include the following:

š� When are children ready to learn toileting? š� Are parents responsible for the differences in ages at which

toilet training is accomplished? š� Does toilet training provide clues to a child’s intellectual

ability?

We know that children are not ready for toilet training until several developmental capabilities exist: to stand and walk well, to pull pants up and down, to recognize the need to eliminate and then to

be able to wait until they are in the bathroom. Once this readiness is apparent, the child can be given a small potty chair and the procedure explained.

Children often pre- fer their own chairs on the floor to using a large toilet. The child should be placed on the chair at regular intervals for a few moments and can be given a reward or praise for suc- cesses. If the child seems not to understand or does not wish to cooperate, it is best to wait a few weeks and then try again. Just as

all of development is subject to individual timetables, toilet train- ing occurs with considerable variability from one child to another. Identify for parents the developmental characteristics of their child and encourage them to appreciate without anxiety the unfolding of skills. These timetables are not predictive of future development.

The child who is ill or hospitalized or has other stress often regresses in toilet-training activities. It is best to quietly reinstitute attempts at training after the trauma. Potty chairs should be available on pediatric units and toileting habits identified during initial assess- ment so that regular routines can be followed and the child’s usual words for elimination can be used.

Cognitive Development During the toddler years, the child moves from the sensorimotor to the preoperational stage of development. The early use of language awakens in the 1-year-old the ability to think about objects or peo- ple when they are absent. Object permanence is well developed.

At about 2 years of age, the increasing use of words as sym- bols enables the toddler to use preoperational thought. Rudimen- tary problem solving, creative thought, and an understanding of cause-and-effect relationships are now possible.

Psychosocial Development PLAY Many changes in play patterns occur between infancy and tod- dlerhood. For example, developing motor skills enable toddlers to bang pegs into a pounding board with a hammer. The social nature of toddler play is also readily seen. Toddlers find the company of other children pleasurable, even though socially interactive play may not occur. Two toddlers tend to play with similar objects side by side, occasionally trading toys and words. This is called paral- lel play. This playtime with other children helps toddlers develop social skills. Toddlers engage in play activities they have seen at home, such as pounding with a hammer and talking on the phone. This imitative behavior teaches them new actions and skills.

Physical skills are manifested in play as toddlers push and pull objects, climb in and out and up and down, run, ride a Big Wheel, turn the pages of books, and scribble with a pen. Both gross motor and fine motor abilities are enhanced during this age period.

Cognitive understanding enables the toddler to manipu- late objects and learn about their qualities. Stacking blocks and placing rings on a building tower teach spatial relationships and other lessons that provide a foundation for future learning. Vari- ous kinds of play objects should be provided for the toddler to meet play needs. These play needs can easily be met whether the child is hospitalized or at home (Table 4–13).

PERSONALITY AND TEMPERAMENT The toddler retains most of the temperamental characteristics identified during infancy but may demonstrate some changes. The normal developmental progression of toddlerhood also plays a part in responses. For example, the infant who previously responded positively to stimuli, such as a new babysitter, may appear more negative in toddlerhood. The increasing indepen- dence characteristic of this age is shown by the toddler’s use of the word “no.” The parent and child constantly adapt their responses to each other and learn anew how to communicate with each other.

COMMUNICATION Because of the phenomenal growth of language skills during the toddler period, adults should communicate frequently with

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Growth and Development 87

Preschool Child (3 to 6 Years) The preschool years are a time of new initiative and indepen- dence. Most children are in a childcare center or school for part of the day and learn a great deal from this social contact. Language skills are well developed, and the child is able to understand and speak clearly. Endless projects characterize the world of busy preschoolers. They may work with play dough to form animals, then cut out and paste paper, then draw and color.

Physical Growth and Development Preschoolers grow slowly and steadily, with most growth taking place in the long bones of the arms and legs. The short, chubby toddler gradually gives way to a slender, long-legged preschooler (Table 4–15).

children in this age group. Toddlers imitate words and speech intonations, as well as the social interactions they observe.

At the beginning of toddlerhood, the child may use four to six words in addition to “mama” and “dada.” Receptive speech (the ability to understand words) far outpaces expressive speech. By the end of toddlerhood, however, the 3-year-old has a vocabu- lary of almost 1000 words and uses short sentences.

Communication occurs in many ways, some of which are nonverbal. Toddler communication includes pointing, pulling an adult over to a room or object, and speaking in expressive jar- gon. Expressive jargon is using unintelligible words with normal speech intonations as if truly communicating in words. Another communication method occurs when the toddler cries, pounds feet, displays a temper tantrum, or uses other means to illustrate dismay. These powerful communication methods can upset par- ents, who often need suggestions for handling them. It is best to verbalize the feelings shown by the toddler, for example, by saying, “You must be very upset that you cannot have that candy. When you stop crying you can come out of your room,” and then ignore further negative behavior. The toddler’s search for autonomy and independence creates a need for such behavior. Sometimes an upset toddler responds well to holding, rocking, and stroking.

AGE PLAY AND TOYS COMMUNICATION

1–3 years Refines fine motor skills by use of cloth books, large pencil and paper, wooden puzzles Facilitates imitative behavior by playing kitchen, grocery shopping, toy telephone Learns gross motor activities by riding Big Wheel tricycle, playing with soft ball and bat, molding water and sand, tossing ball or bean bag Cognitive skills develop with exposure to edu- cational television shows, music, stories, and books

Increasingly enjoys talking Exponential growth of vocabulary, espe- cially when spoken and read to Needs to release stress by pounding board, frequent gross motor activities, and occasional temper tantrums Likes contact with other children and learns interpersonal skills

TABLE 4–13 Psychosocial Development During Toddlerhood

Procedures such as drawing blood can be frightening for a tod- dler. Effective communication minimizes the trauma caused by such procedures:

š� Avoid telling toddlers about the procedure too far in advance. They do not have an understanding of time and can become quite anxious.

š� Use simple terminology. “We need to get a little blood from your arm. It will help us find out if you are getting better.” If the parent is willing, say, “Your mom will hold your arm still so we can do it quickly.”

š� Allow the toddler to cry. Acknowledge that it must be frightening and that you understand.

š� Perform the procedure in a treatment room so that the tod- dler’s bed and room are a safe haven.

š� Be sure the toddler is restrained, with the joints above and below the procedure immobilized.

š� Use a Band-Aid to cover up the site. This can reassure the toddler that the body is still intact.

š� Allow the toddler to choose a reward such as a sticker after the procedure.

š� Praise the toddler for cooperation and acknowledge that you know this was difficult.

š� Comfort the toddler by rocking, offering a favorite drink, playing music, and holding. If parents are present, they can offer the comfort needed.

TABLE 4–14 Communicating With a Toddler

Growth and Development Strategies for communicating with toddlers include the following:

š� Give short, clear instructions. š� Do not give choices if none exist. For example, do not ask

“Do you want to take your medicine now?” but rather say “What juice do you want after you take your medicine—apple or orange?”

š� Offer a choice of two alternatives when possible. š� Approach positively and slowly, allowing time for the toddler

to adjust. š� Tell the toddler what you are doing, and say the names of objects.

Parents and nurses can promote a toddler’s communication by speaking frequently, naming objects, explaining procedures in sim- ple terms, expressing feelings that the toddler seems to be display- ing, and encouraging speech. The toddler from a bilingual home is at an optimal age to learn two languages. If the parents do not speak English, the toddler will benefit from a daycare experience in which the providers do, so that the child can learn both languages.

The nurse who understands the communication skills of toddlers is able to assess expressive and receptive language and communicate effectively, thereby promoting positive healthcare experiences for these children (Table 4–14).

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88 Chapter 4

PHYSICAL GROWTH FINE MOTOR ABILITY

Gains 1.5–2.5 kg (3–5 lb)/year Grows 4–6 cm (1 1/2–2 1/2 in.)/year Uses scissors (A) Draws circle, square, cross (B) Draws at least a six-part person Enjoys art projects such as pasting, stringing beads, using clay Learns to tie shoes at end of preschool years (C) Buttons clothes (D) Brushes teeth (E) Uses spoon, fork, knife Eats three meals with snacks

GROSS MOTOR ABILITY SENSORY ABILITY

Throws a ball overhand Climbs well (F) Rides bicycle (G)

Visual acuity continues to improve Can focus on and learn letters and numbers (H)

TABLE 4–15 Physical Growth and Development Milestones During the Preschool Years

A Uses scissors

C Ties shoes D Buttons clothes E Brushes teeth

B Draws circle, square, cross

F Climbs well G Rides bicycle or bicycle with training wheels

H Learns letters and numbers

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Growth and Development 89

example, one child cuts out colored paper while her friend glues it on paper in a design. This new type of interaction is called associative play (Figure 4–8). The child-life therapist in hospi- tal settings recognizes the therapeutic value of play in planning activities for children that enable them to work through feelings about procedures and separation, as well as facilitating the nor- mal developmental need for interaction with other children.

In addition to this social dimension of play, other aspects of play also differ. The preschooler enjoys large motor activities such as swinging, riding a tricycle, and throwing a ball. Increas- ing manual dexterity is demonstrated in greater complexity of drawings and manipulation of blocks and modeling. These changes necessitate planning of playtime to include appropri- ate activities. Preschool programs and child-life departments in hospitals help meet this important need.

Materials provided for play can be simple but should guide activities in which the child engages. Since fine motor activities are popular, paper, pens, scissors, glue, and a variety of other such objects should be available. The child can use them to cre- ate important images such as pictures of people, hospital beds, or friends. A collection of dolls, furniture, and clothing can be manipulated to represent parents and children, nurses and phy- sicians, teachers, or other significant people. Because fantasy life Physical skills continue to develop (Figure 4–7). The pre-

schooler runs with ease, holds a bat, and throws balls of vari- ous types. Writing ability increases, and the preschooler enjoys drawing and learning to write a few letters.

The preschool period is a good time to encourage good dental habits. Children can begin to brush their own teeth with parental supervision and help to reach all tooth surfaces. Parents should floss children’s teeth, give fluoride as prescribed if the water supply is not fluoridated, and schedule the first dental visit so the child can become accustomed to the routine of periodic dental care.

Cognitive Development The preschooler exhibits characteristics of preoperational thought. Symbols or words are used to represent objects and people, enabling the young child to think about them. This is a milestone in intellectual development; however, the preschooler still has some limitations in thought (Table 4–16).

Psychosocial Development PLAY The preschooler has begun playing in a new way. Toddlers simply play side by side with friends, engaging in their own activities, but preschoolers interact with others during play. For

Figure 4–7 Development of physical skills in preschoolers. Preschoolers continue to develop advanced skills such as kicking a ball without falling down.

Figure 4–8 These preschoolers are participating in associative play, which means they can interact. One child is cutting out shapes, and the other is gluing them in place.

CHARACTERISTIC DEFINITION EXAMPLE

Egocentrism Ability to see things only from one’s own point of view

The child who cannot understand why parents may need to leave the hospital for work when the child wishes them to be present

Transductive reasoning Connecting two events in a cause-and-effect relationship simply because they occur together in time

A child who, awakening after surgery and feeling pain, notices the intravenous infusion and believes that it is causing the pain

Centration Focusing on only one particular aspect of a situation

The child who is concerned about breathing through an anesthesia mask and will not listen to any other aspects of preoperative teaching

Animism Giving lifelike qualities to nonliving things The child who views a monitoring machine as alive because it beeps

TABLE 4–16 Characteristics of Preoperational Thought

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gentle, consistent handling to adjust to the structure of a class- room. Encourage parents to visit preschool programs to choose the one that would best foster growth in their child. Some pre- schoolers enjoy the structured learning of a program that focuses on cognitive skills, whereas others are happier and more open to learning in a small group that provides much time for free play. Nurses can help parents identify their child’s personality or temperament characteristics and find the best environment for growth.

COMMUNICATION Language skills blossom during the preschool years. The vocabu- lary grows to over 2000 words, and children speak in complete sentences of several words and use all parts of speech. They prac- tice these newfound language skills by endlessly talking and ask- ing questions.

Figure 4–9 Jasmine is participating in dramatic play with a nurse while her mother looks on. In dramatic play, the child uses props to play out the drama of human life. It can be an excellent way for a nurse to assess the developmental level of children while talking to them. Notice that the child and the nurse are on the floor at the same level and the atmosphere is informal. Why is it important to be at the same level as the child?

is so powerful at this age, the preschooler readily uses props to engage in dramatic play—that is, the living out of the drama of human life (Figure 4–9).

The nurse can use playtime to assess the preschool child’s developmental level, knowledge about health care, and emotions related to healthcare experiences. Observations about objects chosen for play, content of dramatic play, and pictures drawn can provide important assessment data. The nurse can also use play periods to teach the child about healthcare procedures and offer an outlet for expression of emotions (Table 4–17).

PERSONALITY AND TEMPERAMENT Characteristics of personality observed in infancy tend to persist over time. The preschooler may need assistance as these charac- teristics are expressed in the new situations of preschool or nurs- ery school. An excessively active child, for example, will need

Growth and Development Strategies for communicating with preschoolers include the following:

š� Allow time for child to integrate explanations. š� Verbalize frequently to the child. š� Use drawings and stories to explain care. š� Use accurate names for body functions. š� Allow choices.

The sophisticated speech of preschoolers mirrors the devel- opment occurring in their minds and helps them to learn about the world around them. However, this speech can be quite deceptive. Although preschoolers use many words, their grasp of meaning is usually literal and may not match that of adults. These literal interpretations have important implications for healthcare providers. For example, the preschooler who is told she will be “put to sleep” for surgery may think of a pet recently euthanized; the child who is told that a dye will be injected for a diagnostic test may think he is going to die; mention of “a little stick” in the arm can cause images of tree branches rather than of a simple immunization.

The child may also have difficulty focusing on the content of a conversation. The preschooler is egocentric and may be unable to move from individual thoughts to those the nurse is proposing in a teaching situation.

AGE PLAY AND TOYS COMMUNICATION

3–6 years Associative play is facilitated by simple games, puzzles, nursery rhymes, songs Dramatic play is fostered by dolls and doll clothes, play houses and hospitals, dress- up clothes, puppets Stress is relieved by pens, paper, glue, scissors Cognitive growth is fostered by educa- tional television shows, music, stories, and books

All parts of speech are developed and used, occasionally incorrectly Communicates with a widening array of people Play with other children is a favorite activity Health professionals can:

š� Verbalize and explain procedures to children

š� Use drawings and stories to explain care š� Use accurate names for body functions š� Allow the child to talk, ask questions,

and make choices

TABLE 4–17 Psychosocial Development During the Preschool Years

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Concrete visual aids such as pictures of a child undergoing the same procedure or a book to read together enhance teaching by meeting the child’s developmental needs. Handling medical equipment such as intravenous bags and stethoscopes increases interest and helps the child to focus. Teaching may have to be done in several short sessions rather than one long session.

School-Age Child (6 to 12 Years) Errol, 10 years old, arrives home from school shortly after 3 p.m. each day. He immediately calls his friends and goes to visit one of them. They are building models of cars and collecting baseball cards. Endless hours are spent on these projects and on discus- sions of events at school that day (Figure 4–10).

Nine-year-old Karen practices soccer two afternoons a week and plays in games each weekend. She also is learning to play the flute and spends her free time at home practicing. Although practice time is not her favorite part of music, Karen enjoys the performances and wants to play well in front of her friends and teacher. Her parents now allow her to ride her bike unaccompa- nied to the store or to a friend’s house.

These two school-age children demonstrate common char- acteristics of their age group. They are in a stage of industry in which it is important to the child to perform useful work. Mean- ingful activities take on great importance and are usually carried out in the company of peers. A sense of achievement in these activities is important in developing self-esteem and preventing a sense of inferiority or poor self-worth.

Physical Growth and Development School age is the last period in which girls and boys are close in size and body proportions. As the long bones continue to grow, leg length increases (see Figure 4–5). Fat gives way to muscle, and the child appears leaner. Jaw proportions change as the first deciduous tooth is lost at 6 years and permanent teeth begin to erupt. Body organs and the immune system mature, resulting in fewer illnesses among school-age chil- dren. Medications are less likely to cause serious side effects, since they can be metabolized more easily. The urinary system can adjust to changes in fluid status. Physical skills are also refined as children begin to play sports, and fine motor skills are well developed through school activities (Table 4–18 and Figure 4–11).

Although it is commonly believed that the start of adoles- cence (age 12 years) heralds a growth spurt, the rapid increases in size commonly occur during the school-age period. Girls may begin a growth spurt by 9 or 10 years and boys a year or so later. Nutritional needs increase dramatically with this spurt.

The loss of the first deciduous teeth and the eruption of per- manent teeth usually occur at about age 6 years, or at the begin- ning of the school-age period. Of the 30 permanent teeth, 22 to 26 erupt by age 12 years and the remaining molars follow during the teenage years. The school-age child should be closely monitored to ensure that brushing and flossing are adequate, that fluoride is taken if the water supply is not fluoridated, that dental care is obtained to provide for examination of teeth and alignment, and that loose teeth are identified before surgery or other events that may lead to loss of a tooth.

Cognitive Development The child enters the stage of concrete operational thought at about age 7 years. This stage enables school-age children to consider alternative solutions and solve problems. However, school-age children continue to rely on concrete experiences and materials to form their thought content.

During the school-age years, the child learns the concept of conservation (that matter is not changed when its form is altered). At earlier ages a child believes that when water is poured from a short, wide glass into a tall, thin glass, there is more water in the taller glass. The school-age child recognizes that although it may look like the taller glass holds more water, the quantity is the same. The concept of conservation is helpful when the nurse explains medical treatments. The school-age child understands that an incision will heal, that a cast will be removed, and that an arm will look the same as before once the intravenous infusion is removed.

Figure 4–10 A, School-age children may take part in activities that require practice. This is a consideration when children are hospitalized and unable to practice or perform. Why? B, School-age children enjoy spending time with others the same age on projects and discussing the activities of the day. This is an important consideration when they are in an acute care setting. When you are in the clinical setting, look for examples of this type of interaction taking place.

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Psychosocial Development PLAY When the preschool teacher tries to organize a game of baseball, both the teacher and the children become frustrated. Not only are the children physically unable to hold a bat and hit a ball, but they seem to have no understanding of the rules of the game and do not want to wait for their turn at bat. By 6 years of age, how- ever, children have acquired the physical ability to hold the bat properly and may occasionally hit the ball. School-age children also understand that everyone has a role—the pitcher, the catcher, the batter, the outfielders. They cooperate with one another to form a team, are eager to learn the rules of the game, and want to ensure that these rules are followed exactly (Table 4–19).

The characteristics of play exhibited by the school-age child are cooperation with others and the ability to play a part in order to contribute to a unified whole. This type of play is called cooperative play. The concrete nature of cognitive thought leads to a reliance on rules to provide structure and security. Children have an increasing desire to spend much of playtime with friends, which demonstrates the social component of play. Play is an extremely important method of learning and living for the school-age child. Active physical play has decreased in recent years as television viewing and playing of computer games have increased, leading to poor nutritional status and a high rate of overweight among children. See Chapters 14 and 17 for further discussion of nutrition and physical activity in children.

PHYSICAL GROWTH FINE MOTOR ABILITY GROSS MOTOR ABILITY SENSORY ABILITY

Gains 1.4–2.2 kg (3–5 lb)/year Enjoys craft projects Rides two-wheeler (A) Can read Grows 4–6 cm (1 1/2–2 1/2 in.)/ year

Plays card and board games

Jumps rope (B) Roller skates or ice skates

Able to concentrate for longer periods on activ- ities by filtering out surrounding sounds (C)

TABLE 4–18 Physical Growth and Development Milestones During the School-Age Years

A Rides two-wheeler B Jumps rope C Concentrates on activities for longer periods Shutterstock

Figure 4–11 School-age children’s physical development. Left, Front teeth are lost around age 6 years. The family may have rituals associated with the loss of teeth that could affect the child’s behavior if he loses a tooth while in the hospital. Right, School-age girls and boys enjoy participating in sports. They begin to lose fat while developing their muscles, so they appear leaner than at earlier ages.

A B

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When a child is hospitalized, the separation from playmates can lead to feelings of sadness and purposelessness. School-age children often feel better when placed in multibed units with other children. Games can be devised even when children are wheelchair bound (Figure 4–12). Normal, rewarding parts of play should be integrated into care. Friends should be encouraged to visit or call a hospitalized child. Discharge planning for the child who has had a cast or brace applied should address the activities the child can engage in and those the child must avoid. Reinforce the importance of playing games with friends.

PERSONALITY AND TEMPERAMENT The enduring aspects of temperament continue to be manifested during the school years. The child classified as “difficult” at an earlier age may now have trouble in the classroom. Advise par- ents to provide a quiet setting for homework and to reward the child for concentration. For example, after homework is com- pleted, the child can watch a television show. Creative efforts

and alternative methods of learning should be valued. Encour- age parents to see their children as individuals who may not all learn in the same way. The “slow-to-warm-up” child may need encouragement to try new activities and to share experiences with others, while the “easy” child will readily adapt to new schools, people, and experiences.

COMMUNICATION During the school-age years, the child should learn how to cor- rect any lingering pronunciation or grammatical errors. Vocabu- lary increases, and the child is taught about parts of speech in school. School-age children enjoy writing and can be encouraged to keep a journal of their experiences while in the hospital as a method of dealing with anxiety. It is uncommon for school-age children to understand words as literally as preschoolers.

AGE ACTIVITIES COMMUNICATION

6–12 years Gross motor development is fostered by ball sports, skating, dance lessons, water and snow skiing/boarding, biking A sense of industry is fostered by play- ing a musical instrument, gathering collections, starting hobbies, playing board and video games Cognitive growth is facilitated by read- ing, crafts, word puzzles, schoolwork

Mature use of language Ability to converse and discuss topics for increasing lengths of time Spends many hours at school and with friends in sports or other activities Health professionals can:

š� Assess child’s knowledge before teaching š� Allow the child to select rewards following

procedures š� Teach techniques such as counting or

visualization to manage difficult situations š� Include both parent and child in health-

care decisions

TABLE 4–19 Psychosocial Development During the School-Age Years

Figure 4–12 The nurse can help the hospitalized school-age child and family accept and adjust to new circumstances. Encouraging the child in a wheelchair to participate in group activities can help build confidence in physical skills. Good self-esteem, goal attainment, personal satisfaction, and general health are the continued benefits.

SEXUALITY Children become aware of sexual differences between genders during preschool years, but they deal much more consciously with sexuality as school-age children. As children mature physi- cally, they need information about their body changes so that they can develop a healthy self-image and an understanding of the relationships between their bodies and sexuality. Children become interested in sexual issues and are often exposed to erro- neous information on television shows, in magazines, or from friends and siblings. Schools and families need to find oppor- tunities to teach school-age children factual information about sex and to foster healthy concepts of self and others. It is advis- able to ask occasional questions about sexual issues to learn how

Growth and Development Strategies for communicating with school-age children include the following:

š� Provide concrete examples of pictures or materials to accom- pany verbal descriptions.

š� Assess knowledge before planning teaching. š� Allow child to select rewards following procedures. š� Teach techniques such as counting or visualization to manage

difficult situations. š� Include child in discussions and history with parent. š� Be honest in explanations and all communications.

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much the child knows and to provide correct information when answers demonstrate confusion. Both friends and the media are common sources of erroneous ideas. Appropriate and inappro- priate touch should be discussed, with lists of trusted people who can be approached (teachers, clergy, school counselors, family members, neighbors) to discuss any episodes with which the child feels uncomfortable. Even these trusted people can be implicated in inappropriate episodes, so encourage the child to go to more than one person, an important approach if the child is uncomfortable about a relationship with any individual.

Adolescent (12 to 18 Years) Adolescence is a time of passage signaling the end of childhood and the beginning of adulthood. Although adolescents differ in behaviors and accomplishments, they are in a period of identity formation. If a healthy identity and sense of self-worth are not developed in this period, role confusion and purposeless strug- gling will ensue. The adolescents encountered in nursing practice represent various degrees of identity formation, and each will offer unique challenges.

Physical Growth and Development The physical changes ending in puberty, or sexual maturity, begin near the end of the school-age period. The prepubescent period is marked by a growth spurt at an average age of 10 years for girls and 13 years for boys. The increase in height and weight is generally remarkable and is completed in 2 to 3 years (Table 4–20). The growth spurt in girls is accompanied by an increase in breast size and growth of pubic hair. Menstrua- tion occurs last and signals achievement of puberty. In boys, the growth spurt is accompanied by growth in size of the penis and testes and by growth of pubic hair. Deepening of the voice and growth of facial hair occur later, at the time of puberty. See Chapter 5 for a description of the pubertal stages.

During adolescence children grow stronger and more mus- cular and establish characteristic male and female patterns of fat distribution. The apocrine and eccrine glands mature, leading to increased sweating and a distinct odor to perspiration. All body organs are now fully mature, enabling the adolescent to take adult doses of medications.

The adolescent must adapt to a rapidly changing body for several years. Height, weight, and body proportions increase. Such changes occur with great variability so an adolescent may be at different points of maturation than peers. These physical changes, hormonal variations, and differences in timing offer challenges to identity formation. The adolescent must incorpo- rate the new body, its functions, and retain a healthy sense of self in relationship to peers. The formation of self-identity is a psychologic process but is necessarily closely connected with the bodily changes occurring.

Cognitive Development Adolescence marks the beginning of Piaget’s last stage of cogni- tive development, the stage of formal operational thought. The adolescent no longer depends on concrete experiences as the basis of thought but develops the ability to reason abstractly. Such con- cepts as justice, truth, beauty, and power can be understood. The adolescent revels in this newfound ability and spends a great deal of time thinking, reading, and talking about abstract concepts.

The ability to think and act independently leads many ado- lescents to rebel against parental authority and experiment with risky behaviors. Through these actions, adolescents seek to estab- lish their own identity and values.

Psychosocial Development ACTIVITIES Maturity leads to new activities. Adolescents may drive, ride buses, or bike independently. They are less dependent on parents for transportation and spend more time with friends.

PHYSICAL GROWTH FINE MOTOR ABILITY GROSS MOTOR ABILITY SENSORY ABILITY

Variation in age of growth spurt During growth spurt, girls gain 7–25 kg (15–55 lb) and grow 2.5–20 cm (2–8 in.); boys gain approximately 7–29.5 kg (15–65 lb) and grow 11–30 cm (4 1/2–12 in.)

Skills are well developed (A) New sports activities attempted and muscle development continues (B) Some lack of coordination common during growth spurt

Fully developed

TABLE 4–20 Physical Growth and Development Milestones During Adolescence

B New sports activities attempted

A Fine motor skills are well developed

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Activities include participation in sports and extracurricu- lar school activities, as well as “hanging out” and attending movies or concerts with friends (Table 4–21). The peer group becomes the focus of activities (Figure 4–13), regardless of the teen’s interests. Peers are important in establishing identity and

providing meaning. Although same-sex interactions dominate, boy–girl relationships are more common than at earlier stages. Adolescents thus participate in and learn from social interac- tions fundamental to adult relationships.

PERSONALITY AND TEMPERAMENT Characteristics of temperament manifested during childhood usually remain stable in the teenage years. For instance, the ado- lescent who was a calm, scheduled infant and child often dem- onstrates initiative to regulate study times and other routines. Similarly, the adolescent who was an easily stimulated infant may now have a messy room, a harried schedule with assign- ments always completed late, and an interest in many activities. It is also common for an adolescent who was an easy child to become more difficult because of the psychologic changes of ado- lescence and the need to assert independence.

As during the child’s earlier ages, the nurse’s role may be to inform parents of different personality types and to help them support the teen’s uniqueness while providing necessary struc- ture and feedback. Nurses can help parents understand their teen’s personality type and work with the adolescent to meet expectations set by teachers and others in authority.

COMMUNICATION The adolescent uses and understands all parts of speech. Col- loquialisms and slang are commonly used with the peer group. The adolescent often studies a foreign language in school, hav- ing the ability to understand and analyze grammar and sentence structure.

The adolescent increasingly leaves the home base and estab- lishes close ties with peers. These relationships become the basis for identity formation. There is generally a period of stress or crisis before a strong identity can emerge. The adolescent may try out new roles by learning a new sport or other skills, experimenting with drugs or alcohol, wearing different styles of clothing, or trying other activities. It is important to provide positive role models and a variety of experiences to help the adolescent make wise choices.

Adolescents also have a need to leave the past, to be differ- ent, and to change from former patterns to establish their own identities. Rules that are repeated constantly and dogmatically will probably be broken in the adolescent’s quest for self-identity. This poses difficulties when the adolescent has a health problem, such as diabetes, or a heart problem that requires ongoing care. Introducing the adolescent to other teens who manage the same problem appropriately is usually more successful than telling the adolescent what to do.

AGE ACTIVITIES COMMUNICATION

12–18 years Sports—ball games, gymnastics, water and snow skiing/boarding, swimming, school sports School activities—drama, yearbook, class office, club participation Quiet activities—reading, schoolwork, television, computer, video games, music

Increasing communication and time with peer group—movies, dances, driving, eating out, attending sports events Applying abstract thought and analy- sis in conversations at home and school

TABLE 4–21 Psychosocial Development During Adolescence

Figure 4–13 Peer group activities in adolescence. Social interaction between children of same and opposite sex is as important inside the acute care setting as it is outside. A, Teenagers enjoy playing together. B, Emotional relationships form during adolescence.

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Ensure privacy during the taking of health histories or inter- ventions with teens. Even if a parent is present for part of a history or examination, the adolescent should be given the opportunity to relay information or ask questions alone with the healthcare provider. Give the adolescent a choice of whether to have a parent present during an examination or while care is provided. Most information shared by an adolescent is confidential. Some states mandate disclosure of certain information to parents, such as an adolescent’s desire for an abortion. In these cases, the adolescent should be informed of what will be disclosed to the parent.

Setting up teen rooms (recreation rooms for use only by ado- lescents) or separate adolescent units in hospitals can provide necessary peer support during hospitalization. Most adolescents are not pleased when placed on a unit or in a room with young children. Choices should be allowed whenever possible. These might include preference for evening or morning bathing, the type of clothes to wear while hospitalized, timing of treatments, and who should be allowed to visit and for how long. Use of negotiations and agreements with adolescents may increase com- pliance. Firmness, gentleness, choices, and respect must all be balanced during care of adolescent clients.

sexual relationships, an interplay of the forces of society and fam- ily, and identity formation. The early adolescent progresses from dances and other social events with members of the opposite sex; the late adolescent is mature sexually and may have regular sexual encounters. Nearly one half of all high-school students in the United States have had intercourse, and 34% had intercourse in the previous 3 months. However, 59% of youth did not use a condom at their last sexual encounter, putting this age group at high risk of acquiring sexually transmitted infections (Kann et al., 2014).

Teenagers need information about their bodies and emerg- ing sexuality. To make informed decisions about their behavior, teenagers should understand the interests and forces they expe- rience. Including sex education in school classes and healthcare encounters is important. Information on how to prevent sexually transmitted infections (STIs) is given, with most school districts now providing some teaching on AIDS. Far more common risks to teens, however, are diseases such as gonorrhea and herpes. Health histories should include questions on sexual activity, STIs, and birth control use and understanding. Most hospitals rou- tinely perform pregnancy screening on adolescent girls before elective procedures.

Adolescents benefit from clear information about sexual- ity, an opportunity to develop relationships with adolescents in various settings, an open atmosphere at home and school where problems and issues can be discussed, and previous experi- ence in problem solving and self-decision making. Sexual issues should be among topics that adolescents can discuss openly in a variety of settings. Alternatives and support for their decisions should be available.

Some adolescents identify with a sexual minority group such as lesbian, gay, bisexual, or transgender. They are at particular risk of being stigmatized and harassed by other youth or adults. They are more likely to suffer a variety of problems, such as isola- tion, rejection by family and friends, violence, and suicide, and to take sexual risks (Steever, Francis, Gordon, et al., 2014). Nurses are instrumental in helping these youth by providing information for them and their parents, integrating sexual minority content into school sexual curricula, and providing referrals for health care and social care when needed. See Chapter 17 for further information about the health issues related to homosexuality and other sexual minority practices.

SEXUALITY With maturation of the body and increased secretion of hor- mones, the adolescent achieves sexual maturity. This complex process involves a growing interest in sexuality and romantic or

Chapter Highlights š� Development unfolds in a predictable pattern, but at different

rates dependent on the particular characteristics and experi- ences of each child.

š� Major theories of development encompass the psychosexual (Freud), psychosocial (Erikson), cognitive (Piaget), moral (Kohl- berg), social learning (Bandura), and behavioral (Skinner and Watson) components of individuals.

š� The ecologic theory of Bronfenbrenner and the temperament theory of Chess and Thomas emphasize the interactions of the individual with the environment.

š� Resiliency theory examines risk and protective factors that hinder or help children and families when dealing with developmental and life crises.

š� The newborn period begins at birth and ends at about 1 month of age and is characterized by adaptation to extrauterine life. Infancy spans 1 month to 1 year and is marked by rapid physical growth, mastery of basic fine and gross motor skills, and emerging cognitive and language skills.

š� Toddlers range in age from 1 to 3 years and become increas- ingly mobile and communicative. Preschool years range from

Growth and Development Strategies for communicating with adolescents include the following:

š� Provide written as well as verbal explanations. š� Direct history and explanations to teen alone; then include

parent. š� Allow for safe exploration of topics by suggesting that the

teen is similar to other teens. (“Many teens with diabetes have questions about how to eat foods they and their friends like and still stay within their diet needs. How about you?”)

š� Arrange meetings for discussions with other teens.

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You encounter a 12-month- old child, Julia, while work- ing in the developmental clinic. Her mother tells you that their family practice physician had concerns that Julia might have a developmental delay. She was a full-term baby and there were no complications throughout her mother’s

pregnancy or delivery. Julia’s mother tells you that Julia has a generally shy and slow-to-warm-up temperament. She makes little

Clinical Reasoning in Action eye contact with you and prefers to sit on her mother’s lap and cling to her arms if a stranger gets close. She is able to pick up small objects, babble, crawl, and use her pincer grasp. She is not able to walk, hold a crayon, or speak any words. Julia clearly has a developmental delay.

1. What are some examples of toys you can suggest to Julia’s par- ents based on her developmental level (not based on her age)?

2. What are some examples of hazards you can advise Julia’s parents about avoiding based on her developmental level?

3. What is a suggestion you can give the parents about deal- ing with a child like Julia who has a shy or slow-to-warm-up temperament?

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ages 3 to 6 and are marked by increasing social skills, coordi- nation, and language mastery.

š� School age spans the years from ages 6 to 12, and puberty occurs from ages 9 to 12 years, marked by a growth spurt and sexual maturation. Adolescence begins at 12 years of age and

lasts through the teen years, with physical, emotional, cogni- tive, and social maturation.

š� The nurse assesses development at each stage and provides anticipatory guidance and other interventions to foster optimal development.

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Chapter 5

Pediatric Assessment

Learning Outcomes

5.1 Describe the elements of a health history for infants and children of different ages.

5.2 Apply communication strategies to improve the quality of historical data collected.

5.3 Demonstrate strategies to gain cooperation of a young child for assessment.

5.4 Describe the differences in sequence of the physical assessment for infants, children, and adolescents.

5.5 Modify physical assessment techniques for the age and developmental stage of the child.

5.6 List five normal variations in pediatric physical findings (such as breast budding in a girl) found during a physical assessment.

5.7 Evaluate the growth pattern of an infant or child.

5.8 Distinguish between expected and unexpected physical signs to identify at least five signs that require urgent nursing intervention.

I was scared when we brought Colby to the hospital. He looked helpless, afraid, and sick. The nurses and doctors took over when we got to the hospital, and I felt better because they seemed to know what to do. —Father of Colby, age 6 months

How do examination techniques vary by the age of the child? How does the nurse encourage infants and toddlers to cooperate with the examination? This chapter provides an overview of pediatric assessment, including history taking and examination techniques geared to the unique needs of pediatric cli- ents. Strategies for obtaining the child’s history are presented first. The remainder of the chapter then outlines a systematic process for physical examination of children and adolescents.

Anatomic and Physiologic Characteristics of Infants and Children Children and infants are not only smaller than adults; they also have very different physiology. Knowledge of pediatric ana- tomic and physiologic differences will aid in recognizing normal

variations found during the physical examination. It also assists with understanding the different physiologic responses children have to illness and injury. The illustration in As Children Grow: Children Are Not Just Small Adults provides an overview of impor- tant anatomic and physiologic differences between children and adults.

Obtaining the Child’s History Communication Strategies The health history interview is a very personal conversation with a parent, caregiver, or adolescent during which private concerns and feelings are shared. Try to ensure that both parties clearly understand the information exchange and use effective commu- nication with the parent or the child. Effective communication is difficult to accomplish because parents and children may not always correctly interpret what the nurse says, just as the nurse

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Pediatric Assessment 99

š� Provide privacy and remove as many distractions as possible during the interview. If the client’s room does not offer pri- vacy, attempt to find a vacant room or lounge to interview the child and family. Assure the parents and the child that the information provided is protected under the Health Insurance Portability and Accountability Act (HIPAA), a federal law that requires written consent before personal health information can be shared with healthcare providers outside the facility.

š� Direct the focus of the interview with open-ended questions. Open-ended questions are useful to initiate the interview, develop rapport, and understand the parents’ perceptions of the child’s problem. For example, “What problems led to Roberto’s admission to the hospital?” Use close-ended questions or directing statements to clarify information or to obtain detailed information. For example, “How high was Tommy’s fever this morning?”

š� Ask one question at a time so that the parent or child under- stands what piece of information is desired and so that it is clear which question the parent is answering. “Does any member of your family have diabetes, heart disease, or sickle cell disease?” is a multiple question. Ask about each disease separately to ensure the most accurate response.

may not understand completely what the parent or child says. People’s interpretation of information is based on their life expe- riences, culture, and education.

STRATEGIES TO BUILD RAPPORT WITH THE FAMILY When obtaining the client history, make sure the parents under- stand the purpose of the interview and how the information will be used for the child’s benefit. To develop rapport, demon- strate interest in and concern for the child and family during the interview. This rapport forms the foundation for the collabora- tive relationship between the nurse and parent that will lead to the best nursing care for the child. The following strategies help to establish rapport with the child’s family during the nursing history:

š� Introduce yourself (name, title or position, and role in caring for the child). To demonstrate respect, ask all family mem- bers present what name they prefer you to use when talking with them.

š� Explain the purpose of the interview and why the nursing his- tory is different from the information collected by other health professionals. For example, “Nurses use this infor- mation to plan nursing care best suited for your child.”