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Health Care Needs for the 21st Century Patricia K. Young ● Linda L. Lindeke

C H A P T E R 1

C H A P T E R O B J E C T I V E S

1. Identify global trends linked with nursing practice. 2. Describe changes in global demographics and how they influence health. 3. Define vulnerable population, health disparities, health equity, and social determinants of health. 4. Analyze gaps between current health care trends and individual, family, and societal health and

illness needs. 5. Explain links among individual, family, community, and population health and illness experiences. 6. Explain the role of the nurse in family care coordination.

C H A P T E R C O N C E P T S

● Environments of care ● Globalization ● Health disparities ● Health equity

● Population health and illness ● Social determinants of health ● Urbanization

Introduction

Change is inevitable. Florence Nightingale, the founder of modern nursing practice, was a nonconformist who challenged a man’s world. In the mid-1850s, nurses were largely drawn from the poor, were unskilled, and were often viewed as immoral persons. Refined, well- to-do, and educated women did not put themselves in situations in which their character might be called into question or do work viewed as beneath their societal class. Nightingale was willing to forfeit her family’s support, if necessary, in order to do the work she believed she was called to do. She cared for the social good, and is described as a reformer working to redesign the way nursing was practiced and a leader who questioned the status quo of the day. Everywhere she went, change followed. In fact, her work might be viewed as a fight for change.

Have you ever wondered about the forces that drive nursing practice today? Have you questioned whether current procedures and methods might in future generations appear foolish or even wrong? It can be uncomfortable to question tradition. Nursing has focused on patient needs and built practice around the individual. As care became

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Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-05-21 19:02:54.

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more complex, seeing the needs of the whole person became difficult. Individual medical professionals concentrated on their part of the human system rather than the whole. Who sees the whole person as they really are? Who tends to the holistic care needs of the person? Where does family fit into this picture?

Sometimes students and nurses agree that family is important but are not sure how to approach these connected relationships in their practice. Sometimes families are viewed as disruptive, in the way, or extra burdens in already too busy days. Throughout this book the ideas of thinking family and family-focused care are explored and some new ways of thinking are introduced. This first chapter provides background to help identify some rea- sons why families need to be respected and included in the care of individuals.

Understanding Global Trends and Their Health Effects

Because the care of individuals and families does not occur in a vacuum, nurses need to be informed about the bigger world systems that influence where they work and the ways health care costs get paid. For instance, nurses often lack clear understandings about the costs of health care services and about the laws and guidelines that influence reimburse- ment or payments. They seldom consider the limits of various health care payment sys- tems (e.g., Medicare, Medicaid, private insurance, universal health care) as a student or in practice.

Nurses must fundamentally understand—at their nursing core—that health and illness are a family affair and that where individuals live and who they live with influence health status and illness or disease management. Unique sets of individual circumstances give meanings to every situation. Individuals are situated in families that provide background, history, and lived stories that reflect their lives. Families are situated in social groups or networks that make up communities—these provide the lenses for understanding the larger world’s similarities and differences. These provide individuals with ways to view their health and illness. Health professionals are learning more about ways in which these larger contexts or worlds or environments influence wellness and disease. Things that shape or impinge on the family (e.g., resources, time, relationships, culture) affect health and illness of individual members. Nurses have unique opportunities to help others understand these global influences on local life.

Science and Technology

Science and technology are huge drivers of global change and have greatly developed our understanding of health and illness. Health professions science, including nursing science, has generated multiple perspectives about health and illness. Florence Nightingale was the original champion of nursing science, focusing on the effects of environment on health. Box 1.1 provides a brief biography of Florence Nightingale. Starting with Nightingale’s work, research has shown us that health is determined not only genetically but also by the environment, which has considerable influence. Her work greatly revolutionized ideas about the ways nursing should be practiced. Maybe we should ask: What would Florence Nightingale do if she faced the science and technology of this time? Would she accept things as they are or would she challenge those in leadership and suggest some innovative approaches to the care needs of today’s populations?

Health care–related knowledge has greatly influenced health care professionals’ education—shifting the focus from memorization and merely becoming informed to being

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able to access information, analyze it, and make critical decisions about its use (Frenk et al., 2010). Nurses need skills to search for scientific evidence about the effectiveness of care or interventions and identify the best ways to alleviate problems. Evidence-based practice is the language used as nurses and others determine the best course of action to care for a particular disease. Table 1.1 provides the progression of steps used in imple- menting evidence-based practice.

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BOX 1-1

Florence Nightingale

Florence Nightingale (1820–1910) is considered to be the founder of the nursing profession and sets a fine example for nurses and all who wish to improve world conditions. She used scientific thinking to lead changes in health and illness care. Unusual in Victorian times, she considered the environmental effects on health and emphasized hygiene and good nutrition. During her long life she looked at poverty and disease scientifically and holistically, laying the foundation for modern methods of education and practice. She used statistics to prove her theories and was highly skilled in working with community and political leaders for social reform and public policy advocacy. In her day much of the sick care took place at home and she wrote letters, articles, and books containing detailed instructions for creating nutrition and healing environments. She continues to be a powerful role model, especially because of her effective ways of promoting the empowerment of women to activism for the poor and neglected in society.

TABLE 1-1 Moving Forward in Evidence-Based Practice

The first step is always to develop a clear question about what you want to know. Without a question to clearly guide your investigation, you will not be able to secure the forms of evidence needed to identify the best nursing practices. A search must consider differences between good and bad information and identify the highest level of evidence.

1. Define and clearly articulate the information needed to answer a specific question. If your question pertains to family nursing, then you must be sure to include the word family in your search.

2. Identify and choose appropriate sources of information relevant to the identified question. You may limit your search by years, journals, language, or other factors. A reference librarian can assist you.

3. Develop and use clear and effective search strategies using predetermined terms. These terms need to be linked with your question.

4. Locate and retrieve all information that appears relevant to your question. At first you gather everything that seems connected to the question you have asked.

5. Appraise the information retrieved and evaluate its usefulness. You will usually want the latest information that comes from the most credible sources.

6. Organize and analyze the information pertinent to your specific question. 7. Determine if any important facts relevant to the question asked are still missing (e.g., economics,

legal, social, policy). If important aspects are missing, then you will need to do additional searches. 8. Synthesize or combine all of your findings in ways that best answer the initial question asked. 9. Determine the strength of the evidence used to answer the question asked. The strength of

evidence rests in the quality and type of research efforts used. 10. Decide whether evidence identified is strong enough to alter practice or if more information is still

needed.

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Today nurses cannot simply know the steps of a procedure or intervention; they also need to know the intended effects and outcomes. Advances in communication, technologies, and global knowledge can help nurses consider the best ways to use evidence to solve problems. They need to consider several factors that can influence health:

• Environmental or geographical influences • Where care is delivered (e.g., home, hospital, nursing home, health department) • The places where individuals and families live

The knowledge and information explosion has not only advanced science and technol- ogy, but also influenced the ways individuals and families seek health care services and in- teract with health care professionals. Medical knowledge is no longer isolated, but is readily available to all persons through the Internet. Some people are very knowledgeable about health and illness, but others are clueless. Many know their rights, ask questions, make demands, have high expectations, and want to be partners in their health care experiences. Nurses need effective communication, collaboration, and advocacy skills to partner effec- tively with those seeking care (Hook, 2006; McCloughen, Gillies, & O’Brien, 2011; Mitchell, Chaboyer, Burmeister, & Foster, 2009).

Natural Resources and Environment

Environmental changes, whether natural or produced by civilization, are increasingly being linked with health and illness. A new awareness of humankind’s effect on the planet’s food, water, energy, and environmental resources is emerging. According to the Natural Resources Defense Council (NRDC, 2011), a nonprofit environmental action group, climate change affects health in six ways: air pollution, extreme heat, infectious disease, drought, flooding, and extreme weather. Children, the elderly, and the poor are most vulnerable to health problems due to climate change (United States Global Change Research Program, 2009). Where people live matters! For example, air pollution is wors- ened in rising heat. When the number and intensity of “bad air” days are increased, threats for persons with asthma and other respiratory tract conditions are also increased. Box 1.2 provides information about ways families can protect themselves against air pol- lution health threats.

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BOX 1-2

Tips to Protect Against Air Pollution Health Threats

● Check news reports on the radio, TV, or online for pollen reports or daily air quality conditions. Or visit the Environmental Protection Agency’s Air Now Web site [http://www.airnow.gov/] for air quality information.

● If you or someone in your family has allergies or asthma, on days when pollen or ozone smog levels are high, minimize outdoor activity and keep your windows closed.

● Shower after spending time outdoors to wash off pollen that may have collected on your skin or hair.

● Wash bedding and vacuum frequently to remove pollen that may settle in sheets and carpets.

Source: Natural Resources Defense Council (n.d., Air pollution). Adapted from Hunter, A., & Crabtree, K. 2011. Global health and international opportunities. In J. M. Stanley (Ed.), Advanced practice nursing: Emphasizing common roles (3rd ed., pp 327–350). Philadelphia: F. A. Davis.

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Global Infectious Disease Threats

According to the World Health Organization (WHO, 2011), in 2008, 4 of the top 10 causes of death in low- and middle-income countries were infectious diseases compared to 1 of the top 10 in high-income countries. New and reemerging infectious diseases pose threats to human health globally and cause costly periodic disruptions in trade and commerce, political instability in developing nations, and tensions in developed nations (National Intelligence Council [NIC], 2000). The threat of increased infectious diseases is influenced by several factors:

• Food contamination, potentially from worldwide importation of food products • Infections acquired while hospitalized (nosocomial infections) • Increased use of antibiotics causing resistant organisms • Increases in international travel • Immigration • Return of military or other personnel from overseas assignments (NIC, 2000)

Infectious Illness

The most common infectious illness to affect travelers is diarrhea from foodborne or wa- terborne organisms (WHO, 2012a). Some vaccines are available that can be taken before travel to prevent an infection. In the past decade, increased travel resulted in national con- cerns about epidemic bedbug infestations at low-budget and upscale hotels. However, bed- bugs are found everywhere (e.g., airplanes, subways, movie theaters, locker rooms, stores, even hospitals). They reproduce quickly, can live for a long while without feeding, and even the cleanest persons are susceptible. These bugs can be transported into households in luggage and then affect entire families.

New strains of influenza get introduced through exposure to infected individuals. Those with severe influenza and coexisting chronic illnesses may require admission to the intensive care unit and are at increased risk of dying. Nurses need to be prepared to identify and in- tervene with those at greatest risk for poor health outcomes and consider implications for family, household, and community risks.

Use of Antibiotics

A longtime concern is the inappropriate use of antibiotics to treat infections that have re- sulted in the growth of microorganisms resistant to drug therapy (Lehne, 2013). One ex- ample is multidrug-resistant tuberculosis (TB). According to the WHO (2012b) Tuberculosis Fact Sheet, about 8.8 million new and relapsed cases of TB were reported in 2010. In 2010, an estimated 1.4 million people died from TB. Dr. Paul Farmer details his experience of the TB epidemic among the people of Haiti in the book Mountains Beyond Mountains (Kidder, 2003). Rather than base his treatment of drug-resistant TB on the approach of utilitarianism (i.e., what is good for the many outweighs what is good for the one), he focused on treating TB one case at a time—working with the individual and the family living with the infected person. Evidence showed that caring for the one person and those sharing the dwelling, rather than the many, positively influenced health outcomes. His results altered conventional thinking about the best way to treat TB when resources are limited.

Proper use of antibiotics includes the following recommendations:

• Use antibiotics when prescribed. • Complete the full prescription. • Throw away unused drugs.

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• Do not share medicines. • Use antibiotics only for bacterial illnesses, not viral infections.

It is estimated that as many as 50% of prescriptions written for antibiotic use may be unnecessary (Hicks, 2013) and that antibiotics are so widely prescribed because patients demand them. The result is the growth of antibiotic-resistant bacteria. For example, infection with MRSA (methicillin-resistant Staphylococcus aureus) has long been known to be a threat to the sick and the elderly and continues to be a growing problem. A new form of superbacteria known as CRE (carbapenem-resistant Enterobac- teriaceae), a life-threatening bacterium resistant to most antibiotics, is also a growing problem (Centers for Disease Control and Prevention, 2013). CRE appears to have the capacity to transfer resistance to other bacteria that normally would not be much of a threat. This bacterium is easily transferred through physical contact, is often found in hospitals and long-term care facilities, and is a risk for those in compromised physical conditions. Family members can introduce infectious diseases to each other if they are not aware of good hand washing and isolation techniques.

The spread of infectious diseases results from changes in human behavior—lifestyle changes, such as those occurring at the individual and family level. Nurses, as educators, can play huge roles in facilitating lifestyle changes linked with wellness and prevention.

The Global Economy, Globalization, and Health Care

We often hear the term global economy in the world of business and learn about its influ- ence on the daily lives of people from various nations. The term globalization refers to the increasing commercial trade among countries and includes exchange of ideas, language, peoples, and popular culture. Globalization implies that human exchanges occur in ways that are increasingly more integrated, open, and without borders.

Global threats from infectious diseases are serious world health concerns. For example, ebola has been known since the 1970s but recent outbreaks have spread and have had high mortality in low-resourced countries. However, in countries with good health care systems, early identification, tracking contacts, targeted isolation precautions, and excellent care of infected individuals has produced good results. Disease spread is no longer just confined to small communities, but presents global and international challenges.

Globalization and the Medical Workforce

Globalization in health care is also occurring. The U.S. Bureau of Labor Statistics recently reported that the job growth in the health care sector accounts for one out of every five jobs created. In 2010, about 209,000 primary care physicians or about one third of all U.S. physi- cians managed 51.3% of all clinical visits (Agency for Healthcare Research and Quality [AHRQ], 2011). About half the business went to one third of the physicians—those in pri- mary care. According to the American Academy of Family Physicians, primary care is defined as the care provided by physicians specifically trained for and skilled in comprehensive first contact and continuing care for those with undiagnosed symptoms, signs, or concerns. This care form includes health promotion or maintenance, disease prevention, education, diag- nosis, and treatment of acute and chronic illness. Primary care occurs in a variety of settings (e.g., physician office, inpatient care, long-term care, ambulatory care). Others also provide primary care (i.e., nurse practitioners, physician assistants). The need for registered nurses is expected to grow from 2.74 million in 2010 to 3.45 million by 2020 (Squires, 2012). In 2011, the number of nurse practitioners reached 180,233 and some projections expect that

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number will double by 2025 (Pearson Report, 2011). Likewise, the number of physician as- sistants is likely to continue to grow, with projections reaching 127,821 by 2025 (Hooker, Cawley, & Everett, 2011). Geographical distribution of primary care providers is uneven, with far more of these primary care professionals practicing in urban than rural regions.

Nurses share similar educational standards, but such factors as educational preparation, regulation, credentials, licenses, entry into practice, and clinical practice vary considerably among nations. Across nations, pathways for becoming a nurse, practice expectations, and care delivery vary. For example, midwifery is viewed as a separate profession in Australia, but it is a nursing specialty in the United States. Foreign-educated nurses often face huge challenges as they transition into U.S. health care employment settings (e.g., differences in practice, language barriers, procedures for medication administration, use of technology).

Levels of Nursing Education

Interest in having nurses attain higher levels of education continues to grow with the aim that the nursing force’s knowledge and skill level will keep increasing. Dr. Catherine Gilliss was one of the first nurse leaders to sound the alarm that nursing practice should include the family unit and not just the individual (Box 1.3). Yet, little research has been done to determine the presence of family nursing in nursing programs. An older U.S. study of Bach- elor of Science in Nursing (BSN) programs found that students were inclined to study some things about family nursing, but the amount, type, and content varied widely (Hanson, Heims, & Julian, 1992). A Canadian study (Wright & Bell, 1989) had similar findings with gaps found in family intervention and interview skills. A more recent study of graduate education for family nurse practitioners found that while these students obtained some ed- ucation about family in their core courses, students were not usually expected to complete family assessments or plan interventions for the family unit when taking clinical practicum courses (Nyirati, Denham, Raffle, & Ware, 2012).

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BOX 1-3

Family Tree

Catherine Gilliss, DNSc, RN, FAAN (United States)

Catherine Gilliss is the Helene Fuld Health Trust Professor, Dean of Duke University School of Nursing, and Vice Chancellor for Nursing Affairs at Durham, North Carolina. She is a graduate of Duke’s undergraduate nursing program and is the first alumna from the School of Nursing to hold the position of Dean. Dr. Gilliss earned a Bachelor of Science in Nursing degree from Duke and a Master of Science in Nursing degree from the Catholic University of America. After earning an adult nurse practitioner (ANP) certificate from the University of Rochester, she went on to the University of California at San Francisco, where she earned a Doctor of Nursing Science (DNSc) degree and completed a postdoctoral fellowship. Dr. Gilliss also holds honorary degrees from Yale University and the University of Portland. Her illustrious career has been devoted to graduate nursing education, with a scientific focus on the family and chronic illness. Her research has investigated the experience of family members in the context of illness; the impact of innovative models of nursing intervention on situations that affect the family and its members; and the development and synthesis of scientific work in this area of nursing science. She has received many awards, including the Yale School of Nursing Medal, and has been recognized by the International Society for Family Nursing with its Lifetime Achievement in Research Award. Dr. Gilliss’s contributions to the science of family nursing have revolutionized research in this field and have strongly influenced care for chronically ill patients and their families. Her scholarly works are considered groundbreaking and several are preeminent resources for junior and senior nurse scientists.

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Global Spending for Health Care Costs

Worldwide health care costs continue to accelerate, and the distribution of resources is not always equitable. But how much money is truly spent, what goods and services are bought, and what characterizes the real quality or value of what is bought are not easy to determine. In economics, usually scarce quantities produce high demands and high costs, but adequate or abundant supplies decrease demand and cost. These principles do not work when it comes to health care costs. Even though the health market keeps increasing availability, costs have not been reduced. Health care spending and costs are a result of millions of private, corporate, employer, and government decisions. The cost- benefit ratios of medical expense compared to clinical outcomes are difficult to evaluate. The supply and use of diagnostic imaging devices are important, but the cost and use of technologies vary greatly (Squires, 2012). Table 1.2 provides a view of the use and cost for two machines.

Growing evidence shows that well-educated nurses have an impact on health care out- comes and costs, but nurses are often at risk for being cut during an economic downturn (Kavanagh, Cimiotti, Abusalem, & Coty, 2012). Hospital care is a large part of the U.S. health care system and nurses are the largest direct care providers. Adequate nurse staffing improves safety and quality, decreases infection rates, lowers mortality rates, and decreases adverse events, length of stay, and other things. Despite these savings, nurses are a large expense to hospitals. Models that demonstrate the value of nursing care as a financial in- centive need to be implemented and effectiveness of nursing care made visible to society (Kavanagh et al., 2012).

Global Changes in Demographics

Major demographic changes are occurring worldwide, especially in the more advanced nations. Population growth is slowing, numbers of youth are decreasing as a result of lower fertility rates, and numbers of elderly are rising as people live longer. Migration, immigra- tion, and global travel are part of this picture. Families are moving away from the villages and cultures of their youth. Global changes not only affect the workforce, economics, and politics of individuals living in different geographical regions, but they also influence the health and illness concerns of families and the larger society.

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TABLE 1-2 Diagnostic Imaging Device Use and Cost for Selected Countries

COUNTRY

United States

France

United States

Canada

CT, computed tomography; MRI, magnetic resonance imaging. Source: Adapted from Squires, D. A. (2012, May). Explaining high health spending in the United States: An international comparison of supply, utilization, prices, and quality. Issues in international health. The Commonwealth Fund pub. 1595, Vol. 10. Retrieved May 6, 2012 from http://www.commonwealthfund.org/~/media/Files/Publications/Issue%20Brief/ 2012/May/1595_Squires_explaining_high_hlt_care_spending_intl_brief.pdf

NUMBER OF MACHINES PER 1 MILLION POPULATION

25.9 MRI machines

6.5 MRI machines

34.3 CT scanners

13.9 CT scanners

NUMBER OF EXAMINATIONS PER 1,000 POPULATION

91.2

55.2

227.9

125.4

AVERAGE COST PER EXAMINATION

$1,080

$281

$510

$122

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Changing World Demographics

Trends in birth, death, migration, and immigration patterns point toward population growth in Asia and Africa that will result in those places becoming the “youthful” areas of the world. The population in developed parts of the world (e.g., United States, Canada, European coun- tries) will effectively age so that people under age 30 will make up less than one third of the population (NIC, 2008). Populations of India, China, and countries in sub-Saharan Africa are expected to grow the most (NIC, 2008). Countries such as the United States, Canada, and Australia, with high immigration rates, will also grow, but at lesser rates. Generally, life expectancy at birth has increased steadily over past decades so that, in 2009, the average life expectancy at birth for the global population was 68 (WHO, 2011). In 2009, the lowest life expectancy at birth was 47 years (in Malawi) while the highest was 83 years (Japan and San Marino). Aging populations can also mean decreased family incomes as huge numbers of people retire (NIC, 2008). More resources will likely be needed to support pensions and health care costs of the elderly. This expense could mean fewer dollars are available for education, care of the environment, and national defense. Furthermore, an implication of a “youth bulge” in many parts of the undeveloped world is increased risk for the emergence of political violence and civil conflict (NIC, 2008). The World Health Organization (2009) predicts that men between the ages of 15 and 60 years have much higher risks of dying from injuries, violence, conflict, and heart disease than women in this age category.

Effects of Place on Health and Illness

Where people live matters. Living and working conditions such as overcrowded housing, lack of adequate sanitation, and unsafe working conditions are called social determinants of health. These factors arise from the social or physical environment and can lead to health problems. Living conditions influence not only individual health and illness but also health of the family unit. Young adults from rural communities keep moving into urban dwellings. Small rural communities are often populated with the very old and very young, groups more susceptible to ill health and identified as vulnerable populations.

Urbanization partly contributes to a widening gap between the rich and the poor. Poverty is extensive throughout the world with major concerns still linked with Africa, Asia, and other places. Over half the world’s people live on $2.50 or less per day, and 27% to 28% of children in southern Asia or sub-Saharan Africa are underweight or stunted in growth (Shah, 2010). According to the WHO (2011c), around the world, 33 countries have more than 80% of their people living in urban areas. Worldwide, one in three urban dwellers lives in slums or poor settlements that can lead to increased health inequities and broad health disparities. As pop- ulation demographics change, the risks for various health problems affecting individuals and families also change. For instance, morbidity and mortality rates from infectious diseases (e.g., pneumonia, diarrhea) are higher in undeveloped countries. As countries develop, more improvements in medical care, fewer deaths from easily curable diseases, and public health interventions (e.g., immunizations, clean water, sanitation) occur (WHO, 2009). This change often means that morbidity and mortality statistics in developed countries are most likely the result of noncommunicable diseases (e.g., cardiovascular disease, cancers).

Traditional risks for disease tend to affect low-income populations and are linked with poverty, inadequate nutrition, unsafe water, poor sanitation and hygiene, unsafe sex, and indoor smoke from solid fuels (WHO, 2009). These risks are in sharp contrast to problems that threaten health in higher-income countries, where modern disease risks include over- weight, obesity, physical inactivity, tobacco, and substance abuse. Some nations are fighting both traditional and modern disease risks as length of life increases and noncommunicable

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BOX 1-4

Family Tree

Shirley Hanson, PhD, RN, ARNP/PMHP (United States)

Dr. Shirley Hanson is professor emeritus from Oregon Health Sciences University, School of Nursing. Dr. Hanson has written, coauthored, and edited more than 150 books, chapters, articles, CDs, and various other reports pertaining to families and nursing. Her work centers on fathers/fatherhood, single-parent families, and family assessment and intervention. Her work on the future of family nursing in the United States has been critical to the development of family nursing as a discipline and has contributed to the body of knowledge in family social science. Dr. Hanson’s co-authored textbook for undergraduate and graduate nursing students, Family Health Care Nursing: Theory, Practice and Research, first published in 1996, is now in its fifth edition. The text has been translated into Japanese and Portuguese and has been adapted by a group of family nurses in Scotland. Dr. Hanson’s many contributions to nursing in the area of family were recognized when she was inducted in 1984 as a fellow in the American Academy of Nursing (FAAN), one of the highest honors for nursing leaders in the United States. In 2001, Dr. Hanson was inducted as a fellow of the National Council on Family Relations in recognition of her many contributions in service, publications, research, and practice with families and family social science. In 2007, Dr. Hanson was recognized by the International Family Nursing Conference in Bangkok, Thailand, with the Lifetime Achievement Award for her distinguished contribution to family nursing.

diseases become a major cause of death (WHO, 2009). Risks exposure can be addressed with public health interventions. For example, enacting strong tobacco-control policies or air pollution public health policies helps avoid high levels of disease. Nurses who under- stand large environmental and place-linked risk factors are prepared to improve popula- tion, family, and individual health. Dr. Shirley Hanson authored one of the leading nursing textbooks used by students around the world to study family nursing (Box 1.4).

Changing Family Demographics

Observing diverse families provides insight into the ways families and relationships change over time. Some changes are now seen in mother and extended family roles, the time children spend in school, the age at which retirement is expected, and the years lived alone. Issues such as fewer two-parent families, high divorce rates, cohabitation, remarriage, mixed-race marriages, and civil unions have altered some family foundations that stood for generations. Family alterations could cause both negative and positive results. New ideas about family households, intergenerational care forms, housing and living arrangements, more integrated family values, benefits of intergenerational households, and wider sustainable networks arising from different partnerships could arise. Societal changes often evolve from the needs of indi- viduals and families. Family responses to societal trends influence social and public policies. Factors such as taxation, education, social institutions, travel, and housing are linked with families. A nation’s health is solidly vested in its people and families.

Presently, a definition of the family from an international perspective is not available. This inability to define family in global terms presents problems in terms of immigration, migra- tion, and even health care. Understanding family offers a way to understand the larger units of societies. Today, many family units do not live under the same roof. Growing numbers of people are living alone (e.g., single room occupancy hotels, assisted living facilities, nursing homes). Social isolation for those who are frail, elderly, poor, and vulnerable presents con- cerns. In the United States, more adult children currently live with their parents than at any

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time since the 1950s. The term accordion families is used to describe the ways members move in and out of households. The 2010 census data found that 27% of people live in one-person households compared to 25% in 2000 and only 13% in 1960, trends not seen in less devel- oped countries with families that are primarily traditional extended family households.

Racial, ethnic, gender, and other factors linked with family types are important consid- erations when considering demographics. In 2012, in the United States, Child Trends (2013) reports that 33% of black children lived with two parents as compared to 85% of Asian children, 75% of white children, and 60% of Hispanic children. However, 2010 cen- sus data indicate that 66% of all children under 18 years are living with two parents, down from 69% in 2000. Data show that 40.4% of co-resident grandparents had primary care responsibility for grandchildren with 20.2% of these grandparents living in poverty and about 14% having English language challenges (Murphey, Cooper, & Moore, 2012). The 2010 census identified that the median age at first marriage for men was 28.2 and women 26.1, a long-time upward trend noted since the mid-1950s. Additionally, the overall per- centage of those married was 48.4% in 2010 compared with 51.7% in 2000. Finally, recorded same-sex households increased from 0.3% in 2000 to 0.6% in 2010, a small per- centage increase, but this growing sector raises questions about the ways people identify family. In the United States, family type often has profound effects on the family’s income and each member’s access to health insurance.

Family Migration

Families have always migrated in one sense or another. Today’s families often relocate for similar reasons as in the past. Employment opportunities, income, and the need to care for an ill family member are often leading reasons. Migration may vary based upon personal factors, but most people move where increased opportunity seems likely. It is common to find committed couples or families that live apart from each other. The geographical prox- imity of family has implications across the family life cycle, as nearness and distance are im- portant factors for child and elder care. An interesting factor linked with parental and elder care has to do with siblings; siblings are more likely to live further away from parents than only children (Rainer & Siedler, 2010). This factor could influence parental caregiving roles.

International Families

Changes in international families suggest trends to be considered. For example, fertility rates are a key aspect of family structures and are declining worldwide (Central Intelligence Agency [CIA], 2012). Birth rates indicate that total population is increasing to more than replace the parental generation. Births range from an estimated high of 7.5 children per woman in the country of Niger to a low of 0.78 births per woman in Singapore. The United States has an estimated fertility rate of 2.06 children per woman (CIA, 2012). Many humanitarian projects aim to support child spacing to improve maternal and child health outcomes and potentially create more stable families. Marriage rates, cohabitation, and divorce can affect their adequacy in meeting member health and illness needs. Population customs and characteristics influence unique family needs. Religious beliefs, personal values, and international traditions also affect families (Fig. 1.1).

Wealth and Health

Growing evidence suggests that wealth and health go together (Braveman, Egerter, & Barclay, 2011), and it is widely accepted that higher incomes mean longer lives. Therefore, families

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with greater economic resources are most likely to have greater health and a higher quality of life. For example, in 2009, persons in families living in the poorest communities had 1,420 hospitalizations per 10,000 population for all ages combined, compared with 1,189 of those living in wealthier communities (Healthcare Cost and Utilization Project [HCUP], 2011). Being able to afford health insurance and medical care is not the only factor that influences health and well-being. Family income influences the neighborhoods where families live, level of safety in daily lives, access to good education, availability of nutritious food, access to various forms of leisure activities, and member health. Standards of living vary from place to place across the globe. In 2012, the Department of Health and Human Services Poverty Guidelines identified that an annual income below $23,050 for a U.S. family of four is below the poverty level. In 2007, the richest 1% of U.S. households held one-third of the nation’s total wealth and the richest 5% held more than half (Kennickell, 2009). Links between wealth and health begin early in life. Low birth weight is linked to developmental delays and challenges and chronic conditions. Children born in lower income families have higher rates of asthma, heart conditions, hearing problems, and digestive disorders (Braveman et al. 2011). Health equity is a concern when some have so much and others so little. Thus, it is important to realize that equality can be more of a myth than a reality for many individuals and families.

Health Care Trend Influences on Nursing Practice

Current health care trends have critical implications for individuals and families; those of concern to the larger society or population also affect individuals and families. Trends also shape the ways in which health care services are made available, how these services are provided, and the clinical practices of the workforce. Even without being aware of personal connections, we are all more closely related than we realize. People in small towns or rural communities easily recognize these connections as extended family lives nearby, but those living in urban settings may not. In today’s global society, the lives of all people and places are interconnected, interdependent, and complex. Nurses need to be aware of these relationships and identify the health and illness implications of an intricately linked world even when things do not appear directly related at a point in time.

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FIGURE 1-1 An international family.

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Gender and Health Risks

Gender is an issue of concern when it comes to health. Women’s rights are an important way to understand personal well-being. In the United States, women’s suffrage fought for and only gained the right to vote in 1920. An affirmative action policy that covered discrimination based on gender was added to a previous 1964 Civil Rights Act in 1967. This policy ensured American women and minorities the same educational and employment opportunities as white males. During the 1960s and 1970s, the feminist movement waged war for women’s rights in the workplace. By the late 20th century and early 21st century, greater equality has spread with pay for men and women becoming more equal. In the United States, the American Civil Liberties Union continues to fight for equal opportunity for women in areas of education, the workplace, gender-based violence, and harms to women in the criminal justice system. Nursing, a largely female discipline, has also been affected by these long and continued battles.

It is now widely understood that when nations lack health care infrastructure and op- portunities for a full education, the poor and women suffer the most. For thousands of years, gender roles have been socially constructed and beliefs aligned with biology have driven religious and traditional practices. Gender inequality often means that women are unable to overcome poverty and have less ability to raise healthy and well-educated sons and daughters. Women worldwide are often the targets of physical and sexual violence, genital mutilation, and many other forms of cruelty. Poverty is often the fate of women, who represent two thirds of the world’s poor. Across the globe, gender equality is a battle still being fought in many places. The battle to improve women’s rights to live full and pro- ductive lives, decrease maternal health risks, increase choice in family planning, and combat issues linked with HIV/AIDS and other diseases is still being fought. Nurses can advocate for gender equality.

Noncommunicable Disease

The focus for many nursing students and nurses has largely been acute care, in which they attend to patient problems or diseases. In addition, the Hollywood depiction of a nurse as rescuer in times of critical need doesn’t address the complex family stories linked with health and illness. According to the United Nations (2012), noncommunicable diseases cause 36 million deaths worldwide in a decade, a number that accounts for 63% of all deaths. These conditions often result from cumulative lifestyle factors (e.g., tobacco use, lack of adequate nutrition, physical inactivity, substance abuse). When individuals and family units have unhealthy lifestyles, then it is likely that they will have a disproportionate number of deaths from noncommunicable diseases. Growing numbers of elderly persons are at risk, 20% or more of the population in developed countries is 60 years of age or over, and 80% of all deaths are currently attributed to noncommunicable diseases (United Nations, 2012). If nurses fail to focus on individual and family lifestyles, then the care needed to support their health and wellness will likely be neglected.

Taking a Proactive Stance

Nurses can take action before something goes wrong. A proactive nurse is concerned about wellness, health promotion, and prevention, which are strong predictors of health and illness outcomes, and can help influence the daily lives of individuals and family members. Proactive nurses can use nursing actions to not only address critical acute needs, but think beyond the present and help individuals and families prevent future problems. They ask questions and think outside the box of usual care to address family household, adequacy

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of supports, availability of needed resources, and access to needed information during care delivery and they use evidence and competencies to satisfy patient and family needs. Nurses can help individuals and families by listening, answering questions, becoming partners in care, and addressing home and community needs.

Noncommunicable diseases should challenge the way nurses think about how nursing care is organized and delivered. These diseases are linked with lifestyle changes, urbaniza- tion, and globalization. Costs of these diseases pose economic burdens for individuals, families, and larger societies related to absenteeism, disability, lost income, and even bank- ruptcy. Medication costs for some conditions can be equivalent to several days’ wages. Those without health insurance or with inadequate finances might forfeit the medications and increase their risks for catastrophic illness or even early death. Thoughtful nurses see beyond the acute phase, note possible causative factors, and weigh potential needs and risks linked with discharge. Proactive nurses know that families can greatly influence the ways individual members manage needed lifestyles at home.

Practicing Nursing and Thinking Family

Nursing practice applies science and art to everyday real-life problems that influence health, wellness, illness, and disease. It is more than just identifying problems and fixing them; it is also recognizing that problems exist in larger systems (e.g., households, worksites, social domains). Nurses help those seeking care find ways to prevent, manage, and resolve prob- lems. Nurses treat, educate, counsel, coach, minister to, advocate for, direct, assist, and support. Some of the work of skilled nurses can get done without requiring much critical thought. However, other nursing actions must be intentional and should include reflection that evaluates whether what was accomplished is most desirable. Holistic nursing care considers unique needs and values. Nurses help those seeking care find ways to prevent, manage, and resolve problems (Box 1.5).

Families as Allies

To communicate effectively with multiple family persons about the needs of a member, nurses need skills that prepare them to facilitate care that involves the whole of indi- viduals’ lives. Too often, family support persons are merely handed a patient handbook with a reading level too high for them to understand or information is given in imper- sonal ways without considering specific recipient needs. Family members do not always know what they should ask or expect as they may have never experienced this situation before. Families do not expect errors or mistakes because they want to believe things are under control and everyone knows what they are doing. However, family members are often fearful, extremely stressed, unclear about the complexities linked with a con- dition, and unclear about what should happen or when. Telling individuals and families what to expect and when things will happen can create allies who may be helpful in preventing mistakes along the way and delivering care that better meets needs.

Throughout this textbook, you will find the idea of thinking family is continually used as a form of reference for caring for every individual met in a health care delivery setting or system. Nurses who think family understand ways in which the larger social context and current trends affect individuals, family lives, and family health. These relationships can be used to inquire about needs, connect with persons, listen, and respond in valued ways as care is received (Doane & Varcoe, 2005). An important aspect of nursing care is the time given to hear the voiced needs. Nurses who think family seek the voices of others and take time to listen.

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Individuals Are Family Members

When nurses isolate individuals from families, it is like taking an amputee’s prosthesis and asking him to walk. As students, nurses spend much time learning the science of nursing and ways to use evidence and become experts at delivering nursing care. But they need to guard against believing that they are also the experts on what individuals and families perceive that they need. Nurses need to be willing to hear from individuals and families about their bodies, lives, and experiences. Great inequities exist and not everyone, even those with the same diagnosis, seeks or needs care in the same way. Expectations differ and if all care is delivered in uniform ways without respect for unique needs then critical concerns can be overlooked.

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BOX 1-5

Evidence-Based Family Nursing Practice

Illness Beliefs Model

Creating a context for changing beliefs about illness can be difficult, and these concerns constitute the foundation of the Illness Beliefs Model. The first thing to consider is the way in which the nurse meets an individual and the impression formed within the first few minutes of the meeting. Show genuine interest and desire to collaborate by taking the temperature of the relationship while preparing for a therapeutic conversation. Knowing the diagnosis alone is not enough; the nurse must also understand the ways illness has affected lives. It is useful to learn about illness suffering, beliefs about diagnosis, causative factors, and beliefs about healing and prognosis. Many things can enter into the experience of living with an illness. An important role of the nurse is to ask questions that identify actions to be taken. Nurses can also speak the unspeakable, offer alternative ideas, and offer commendations. If it is possible to use a reflective clinical team, they may offer additional ideas for families to consider. The family can then respond to the new ideas and identification of any new beliefs that emerge can be recognized. Recognizing family strengths and acknowledging their suffering can invite new energy and a positive direction. Immersion in practice with families needs to be observable. Two things stand out about family practice:

● Expert practice with families needs to be visible, measured, synthesized, and mentored. ● Processes and outcomes of family nursing practice are messy and complicated.

Through intensive immersion at the Family Nursing Unit at the University of Calgary, clinical scholarship allowed many nurse researchers to examine and describe the family practice. Over the years, many masters and doctoral students completed practicums in the family unit and seven doctoral students, one post-doctoral fellow, and two visiting scholars working with faculty conducted research about family nursing practice. Study findings, in turn, reflected changes in practice. The term family systems nursing was coined to signify care for the family unit as opposed to the term family nursing, which had mainly focused on individuals.

The Illness Beliefs Model strongly identifies the strength of beliefs to influence behaviors and responses to them when it comes to suffering. Beliefs of individuals, family members, health providers, and society all come into play when an illness diagnosis occurs. Knowledge creation and knowledge transfer for family nursing practice are still needed. Recommendations for change require action in several areas: create innovative opportunities for systems changes from the top down, create family nursing teams and harness their energy for practice changes, learn from the practice knowledge already identified, and keep your eye on what you as a nurse bring to nursing practice. Family nursing is first about change in nurses as they become more curious, less judgmental, and more open to others’ realities.

Source: Bell, J. M., & Wright, L. M. (2011). The Illness Beliefs Model creating practice knowledge in family systems nursing for families experiencing illness. In E. K. Svavarsdottir & H. Jonsdottir (Eds.), Family nursing in action (pp 15– 51). Reykjavik, Iceland: University of Iceland Press.

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Health and illness occur within the context of daily life, lives that are outside the view of nurses and other health care providers. A brief visit of 10 to 15 minutes with health care providers is often inadequate to ascertain all the issues linked with complicated lives and problems. When nurses think family, they reflect about the connections between individuals and families. They realize that any health alteration of a member, young or old, affects the family unit. Nurses who think family recognize that people live connected and interde- pendent lives and support by family members can vary. Nurses’ attitudes and actions have potential to shape experiences in negative and positive ways. Families require skills, infor- mation, and answers to questions to successfully care for individual needs.

Recognizing Family and Community Links in Nursing Care

The culture, tradition, and history of a geographical place influence the lives of those living there in health and illness. Nurses living or employed in particular geographical areas must be attuned to the benefits and risks of place that might impinge on health and create risks.

Coordinated Care: An Important Family Nursing Role

Care coordination ensures that individual needs and preferences for health services and in- formation are met (National Quality Forum, 2010). While not the same, care is sometimes used interchangeably with terms such as case management and disease management. Table 1.3 shows the differences in these terms and nurses’ roles. Nurses who think family assume important roles with individuals and families and can take leadership in three important caregiving areas:

• Care management • Disease management • Care coordination

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BOX 1-6

Family Circle

While working as a care coordinator in an inner city community clinic, Nurse Jones has been caring for Maria and her 2-year-old daughter Natalie for more than a year. Natalie has been admitted to the hospital three times in the past 6 months because of asthma that did not resolve with ongoing medications and nebulization treatments at home. These hospitalizations are very costly for Maria, who has to miss work when Natalie is ill. They are also very frightening for both mother and child. Nurse Jones has worked with Maria and Natalie to be sure that the medications are correct. Nurse Jones decides to arrange for a home visit to assist this family in preventing further episodes. When Nurse Jones arrives at Maria and Natalie’s apartment, she sees that a city bus stop is located right outside. When looking around the windows in the apartment, Nurse Jones observes that Natalie’s room is at street level. Maria explains that the noise of the busy street sometimes disturbs their sleep.

1. What do you notice in this situation? 2. Provide two or three alternative explanations for Natalie’s current situation of frequent

admissions. 3. Discuss the case with a peer and compare interpretations. Discuss actions Nurse Jones can

take as she works with this family. Decide on next steps to be taken by the care coordinator.

What resources are available in your community for Maria and Natalie?

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As they navigate health care systems to locate and obtain needed care, individuals and families can become frustrated with the barriers they meet. Nurses who think family are able to anticipate these needs and provide guidance about needed resources that might be in the community. Review the Family Circle case study and use it as an opportunity to begin thinking about the ways you can include families in your nursing care (Box 1.6).”

Care coordination makes sure that individuals in health care settings get the right care, at the right time, by the right persons. Care coordination involves assessment, planning, imple- mentation, evaluation, monitoring, support, and advocacy so that care is not duplicated, safety is promoted, and medical errors are prevented (Lindeke, Leonard, Presler, & Garwick, 2002). Coordinated care, which includes physician support, health literacy, prevention, and emotional and social support, is most widely used in work with children, especially those with chronic conditions and special care needs, and to a lesser degree with older adults. However, family needs to be included in the care of all sick members, regardless of age. Coordinated care is important to families for all chronic conditions, advanced illness, and end-of-life care and can promote planning, improve satisfaction, and lower costs (Englehardt et al., 2006).

Family-Centered Care Coordination

Models and guidelines to specifically describe cycles of care coordination activities that en- sure appropriate and well-coordinated health care have been developed (WHO, 2000). The WHO proposes that a family health nurse, who works with individuals and families in primary health care and public health, be a key contributor to a multidisciplinary health care professional team for the 21st century. The project, called HEALTH21, has three basic values:

1. Health as a fundamental right 2. Equity in health and solidarity in action between countries, between groups of people

within countries, and between genders 3. Participation by and accountability of individuals, groups, and communities and of

institutions, organizations, and sectors in health development

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TABLE 1-3 Comparing Nurse Roles for Care Coordination, Case Management, and Disease Management

NURSING ROLE

Focus

Typical techniques

Examples

CASE MANAGEMENT

Care planning, monitoring referrals, resources, risks

Episodic oversight of care related to illness or disability

Hospital-based discharge planning

CARE COORDINATION

Assess, connect, educate, communicate

Comprehensive ongoing integrated care planning

Patient/family-centered medical or health home

DISEASE MANAGEMENT

Engage individuals in appropriate symptom management

Disease-specific clinical guidelines, formularies, focused patient education programs, symptom monitoring

Immunization education and tracking; smoking prevention and treatment

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The Institute for Healthcare Improvement (IHI) is a vast, multifaceted health care organization improving systems worldwide through a creative range of projects and coalitions. They have established what they broadly refer to as the Triple Aim initiative to pursue three critical objectives for health care design:

• Improve the health of the population. • Enhance the patient experience (i.e., quality, access, and reliability). • Reduce or control the per capita cost of care.

Nurses who think family ensure that individuals and families are told about the types of support they will need, attend to specific coordinated health care needs, and assist with personal care decisions as needed. The Presler Model of Family-Based Care Coordination (Box 1.7) was tested with 83 families whose children received specialty care for complex health conditions (Nolan, Orlando, & Liptak, 2007). Findings indicated that parents given this form of care greatly appreciated it, became responsible for most aspects of care coor- dination, and were very satisfied. Nurses who think family realize that adults offered similar care would likely respond positively as well.

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BOX 1-7

Presler Model of Family-Based Care Coordination

Step 1. Identifying and engaging families that lack care or experience fragmented care Step 2. Assessing families regarding:

● Needs, concerns, priorities ● Strengths and resources ● Current health/functional status, including health records review ● Need for symptom management, services or resources to improve quality of life ● Access to primary and specialty health services ● Access to health care insurance (public or private) ● Access to therapies, nursing services, durable medical equipment or supplies ● Technology or environmental supports or modifications currently used or needed ● Access to basic resources such as food, housing, transportation, respite ● School/employment placement and satisfaction ● Community inclusion and satisfaction ● Perceived need for care coordination services and desired role of the care coordinator

Step 3. Developing family-centered interdisciplinary/interagency plan of care

● Identifying family preference for care coordinator activities and roles ● Identifying current and future goals and priorities ● Developing comprehensive health services plan that includes:

● Medical/health care home ● Specialty care referrals and integration ● Home health care needs and services ● School/daycare/employment health services needs ● Emergency services

Step 4. Implementing the plan of care

● Teaching the family about the importance of health promotion, health condition management and prevention of secondary disabilities

● Teaching the family essential skills for self-advocacy, self-management and care coordination ● Providing resource information

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Families are usually interested in and willing to take part in care delivery but they often lack the knowledge of what to do. Too often, nurses and other health care providers assume they will do what is needed. In the case of both children and adults, if families aren’t in- formed about what needs to be done, the individual and family are inadequately prepared to manage the illness or prevent complications. Rethinking the ways individuals and families are included in care situations should improve service delivery, reduce complications and errors, save money, and increase satisfaction. Family and friends are usually primary care providers for young and old individuals and need nurses prepared to think family (Fig. 1.2).

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BOX 1-7

Presler Model of Family-Based Care Coordination—cont’d

● Facilitating interdisciplinary and interagency referrals ● Arranging for and coordinating services ● Advocating for and with the family as needed ● Working with third party payers to ensure appropriate access and payment ● Promoting information exchange with community agencies, schools/employers and health

systems providers including appropriate health care providers at times of transition ● Preparing for and facilitating transition to systems of care, roles and responsibilities as

developmentally appropriate at each encounter

Step 5. Monitoring and evaluating the plan of care

● Assessing individual and family outcomes ● Assessing systems-related outcomes ● Advocating for systems change to improve outcomes ● Providing resource information

Step 6. Disengaging from active care coordination

● Determine individual and family desires and abilities to coordinate care ● Maintain care coordination records ● Periodically assess individual and family’s desires or needs for care coordination

If care coordination services are needed, return to Step 2.

Source: Used with permission of B. Presler, PhD, RN, CPNP, APRN.

FIGURE 1-2 Nurses include individuals and families in care situations.

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Shared Decision Making

Nurses often have competing demands with many decision points during a single workday or shift. Some tasks are purely administrative and others are process decisions about care needs. Nurses who think family thoughtfully decide what are the most efficient and optimal ways to spend their time. Nurses who think family form therapeutic relationships and ad- vocate for policies and practices that can best address needs of the family unit. For example, policy says an assessment must be completed on every new admission. This generally means a form must be completed that details assessment findings and observations. Nurses who think family will effectively use this time to listen to find out the greatest needs of the in- dividuals and families, to see that questions are answered, to give needed support as care is delivered, and to set priorities.

This shared decision making with the families occurs within therapeutic relationships that honor unique individual and family preferences and circumstances. Care options use “decision aids” based on the best available evidence that is presented in clear language so the best choices can be made. An international collection of high-quality decision aids is now available for nurses and others to use, thanks to collaboration between stakeholders from 14 countries in the International Patient Decision Aids Standards Collaboration (IPDAS). IPDAS goals guide individuals and families as they engage in “values clarification” around health, a process integral to the Presler Model of Family-Based Care Coordination and consistent with a family-focused nursing care approach.

When nurses think family, multiple members are included in the discussions. The intent is to reach a conclusion whereby individual rights are weighted highly, but consensus from family members who individuals regard as important are included. A number of organi- zations and agencies offer Web sites and tools for use in shared decision making (e.g., Agency for Healthcare Research and Quality, Cochrane Collaboration, Center for Shared Decision Making, Choosing Wisely, Health News Review, Informed Medical Decisions Foundation, Kaiser Health News, U.S. Preventive Services Task Force). Use of decision- making aids can be helpful for making decisions and helping families make difficult choices.

Chapter Summary

Health care is driven by many factors. Natural disasters, economic disparities, political upheavals, and many other things affect health. Social issues such as poverty, housing, and education along with growing scientific evidence and technology are just a few things that affect health and illness treatment. In a continually changing world picture, nurses are challenged to stay abreast of global influences on current trends. The rela- tionships and interdependence of many factors, social determinants of health, influence health and illness. Individuals live in families and are part of communities. Health care delivery is not always equitable. The places people live have implications for nurses to consider as care is given. Where families live, learn, work, play, and pray influences health needs and illness risks. This chapter introduces some initial ideas about thinking family and why a family-focused approach in nursing is needed. Proactive nurses identify ways to coordinate care between acute care settings, homes, and communities. Florence Nightingale responded to the concerns of her time; what would she do if she were here now?

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