Family & Societal Nursing

Family_Focused_Nursing_Care_----_Chapter_11_Family-Focused_Care_and_Chronic_Illness.pdf

Home >Nursing homework help >Family & Societal Nursing

Family-Focused Care and Chronic Illness Sharon A. Denham

C H A P T E R 11

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

1. Explain chronic illness experiences from individual and family perspectives. 2. Examine special family concerns associated with chronic disease management. 3. Describe ways nurses prepare families to satisfy various member needs associated with chronic

illness. 4. Discuss management of family stressors associated with living with uncertainty. 5. Use family-focused care to support and overcome barriers when child and adult members have a

chronic illness.

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

● Care coordination ● Chronic illness ● Collaboration ● Family health routines

● In-time ● Non-normative ● Normative ● Off-time

Introduction

This chapter considers the complex care needs linked with chronic illness and families’ di- verse experiences in living with chronic illness over time. Chronic conditions are not static; they often change. A major goal is self-management so that complications are delayed or prevented. Although nurses are often well prepared to address the acute conditions, many are less familiar with long-term needs related to chronic conditions. Acute illnesses usually have rapid onset and symptoms are often short-lived. Those suffering with an acute illness may heal and resume prior activities, suffer from disabilities or limitations, or die. Acute conditions disrupt life, can be traumatic, and put stress on family members, but situations are usually temporary and more quickly resolved.

On the other hand, chronic health conditions typically last more than a year and have no cure. The World Health Organization (2002) defines chronic disease as health problems that require ongoing management over a period of years or decades. Common chronic con- ditions are asthma, diabetes, cerebral palsy, multiple sclerosis, and cancer. Chronic condi- tions often require unusual attention and intrude into all aspects of family life. Many can

293

2910_Ch11_293-324 05/01/15 11:37 AM Page 293

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 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

be self-managed with medications and lifestyle changes. Persons with chronic conditions often live active healthy lives for many years. Persons living with conditions, such as asthma or diabetes can mostly live healthy lives when diseases and risk factors are managed. How- ever, some chronic conditions such as multiple sclerosis, amyotrophic lateral sclerosis, and lupus can progressively worsen over time. Persons with disabilities can be severely chal- lenged to accomplish some daily tasks and some require a continuous caregiver. Many vet- erans of the Vietnam, Afghanistan, or Iraqi wars experienced severe injuries and live with significant physiological limitations often accompanied by post-traumatic stress syndrome. Veterans may live decades with needs that tax a family’s abilities and resources.

Although nurses often agree that family is important in chronic care management, their formal education does not always prepare them to see needs of family units. Caregiver support is often discussed for parental care of dependent children or dying persons, but less attention is given to the chronic care needs of adults. Nurses often think family with the elderly population or conditions such as Alzheimer’s disease. Less attention is given to chronic con- ditions such as Down syndrome where persons can live into their 50s and outlive aged parents. Family needs of decades or a lifetime with a chronic condition are rarely considered. Changes with developmental stages and adaptations over time are needed. Maintaining high-quality family household life can deplete resources with some types of chronic illness.

Nursing concerns and system matters potentially linked with chronic care needs are ad- dressed using the Family Health Model (Denham, 2003). A case study of the Zimanske family, a family living with a rare genetic condition, is threaded throughout this chapter. Their story provides ways to view multiple concerns associated with chronic disorders. Their experience begins at their son’s birth and continues through diagnosis, disease pro- gression, and after his death. Their story demonstrates how diagnosis of a chronic condition saturated their family life. Chronic conditions change, require different forms of attention, and can create hardships. This chapter describes ways family unit problems can be paired with member’s chronic conditions.

Defining Chronic Illness and the Associated Needs

Care of chronic illness is part of daily life for many families across the nation and through- out the world. Getting older makes the odds of having two or more conditions greater. In 2005, chronic disease was the cause of 70% of Americans’ deaths and accounted for more than 50% of all deaths (Kung, Hoyart, Xu, & Murphy, 2008). When many individuals live with multiple chronic conditions, the overall health of the nation’s people is worsened (Institute of Medicine, 2012). Threats can be enormous when multiple members from a single household have several chronic conditions.

In the United States, health is generally viewed using a deficit perspective. Morbidity and mortality rates are key indicators of a nation’s health. Health is a construct that includes phys- ical, mental, spiritual, and social dimensions. With family and population health we look be- yond merely saving lives and consider the quality of those lives. Many factors influence chronic conditions such as disease stage at diagnosis, age of affected person, competing family needs, access to care, and availability or lack of needed resources. Nurses who think family know chronic conditions permeate lives, far beyond biological and pathophysiological disease traits. Nursing is often defined as attending to an individual’s experience and response to health and illness (American Nurses Association, 2010). Thus, family-focused nursing care with chronic illness is attending to the family’s experience and members’ responses to chronic illness.

Chronic illnesses sometimes lead to earlier deaths and severely impacts the individual and family’s quality of life, altering their ability to perform usual activities of daily living,

294 CHAPTER 11 ● Family-Focused Care and Chronic Illness

2910_Ch11_293-324 05/01/15 11:37 AM Page 294

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

interrupting education, and limiting the ability to work and engage in neighborhood and community activities. Socioeconomic conditions, the place where one lives, and the ways persons interact, perform activities of daily living, solve problems, and deal with disruptions are often additional factors linked with chronic illness and its management.

Nurses who think family consider familie’s capacities to care for members with chronic conditions, regardless of whether the diagnosed person is young or old. When infants, chil- dren, or teens have a chronic disease diagnosis, the condition and medical treatments usually change over time. For example, a person diagnosed with type 1 diabetes has a vastly different medical treatment when age 35 than when first diagnosed at 11 years old. Keeping pace with changes in best medical practices is something those living with chronic conditions and their family unit’s might need to support their changing care needs.

Family nurses realize that whenever they meet persons with chronic conditions in a clinical situation, it is a chance to assess the condition, answer questions, give updated information, and address family quality-of-life concerns. Visits are times to update treatments, ascertain needed resources, and assess thinking that might differ from best care management. For example, before the late 1970s, good diabetes management occurred with what was at times impure insulin that varied with batches. Insulin needles were boiled and reused. Dietary ex- change food lists were used. Urine was regularly checked by individuals for glycosuria. Today’s treatment of diabetes involves regular blood glucose monitoring, hemoglobin A1C, disposable fine-gauge needles, and lifestyle management. Counting carbohydrates, choosing low-calorie high-nutrient foods, managing portion size, and balancing dietary intake and physical activity are stressed today. Although family health routines are important to diabetes management, family is not always present or intentionally included in the education (Denham, 2003).

Chronic Conditions in Adults

Persons diagnosed with a chronic illness as children will still have the condition as they get older. Thus, when children with type 1 diabetes become adults they are likely to experience two or more complications as they age. In adulthood, the most common chronic conditions are cardiovascular disease, risks related to hypertension and obesity, and arthritis (Chen, Baumgardner, & Rice, 2011; Halfon & Newacheck, 2010). Chronic conditions can be ac- companied by long-standing pain, severe disabilities, impaired senses, and depression or other mental health conditions. When individuals have more than one chronic condition the term multimorbidity is applied. Chronic conditions can greatly compromise life and make disease management extremely challenging. The lived experience of chronic illness af- fects person and family unit, extended kin, and friends. Thinking family linked with chronic care requires nurses to focus on disease management from a household perspective.

Conditions once only seen in pediatrics, such as congenital heart defects and cystic fibrosis (CF), are now adult diseases as these persons live longer (Halfon & Newacheck, 2010). The Adult Congenital Heart Association estimates there are 750,000 adults with the diagnosis. The Cystic Fibrosis Foundation (2010) reported that in the 1950s children rarely lived to attend grade school. Now the median predicted age of survival is 38 years. Although the exact conditions and age of onset vary, many share common clinical experiences throughout the disease trajectory and various demands are made on family members.

Chronic Conditions in Children

In general, children are likely to have chronic conditions that are genetic or environmental in nature. Childhood diseases mostly result from congenital abnormalities, neonatal exposures, or impairments due to unintentional injuries, whereas adults have chronic conditions from

CHAPTER 11 ● Family-Focused Care and Chronic Illness 295

2910_Ch11_293-324 05/01/15 11:37 AM Page 295

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

cumulative effects of lifestyle risks, environmental exposures, and degenerative conditions (Halfon & Newacheck, 2010). Major advances in health care services, technologies, and med- icines have occurred. Management of chronic conditions that were once life limiting has changed; as people with chronic illness live longer disease prevalence has grown (Cohen et al., 2011; Tennant, Pearce, Bythell, & Rankin, 2010). For example, children who, in the past, might have died in infancy now survive once-fatal conditions such as extreme premature birth, congenital heart disease, cystic fibrosis, and infectious diseases. Chronic childhood con- ditions lead to developmental vulnerability and dependence on adults for caregiving, and are manifested as different types, prevalence, and patterns of chronic disease (Halfon & Newacheck, 2010). Other common childhood conditions are obesity, allergies, asthma, learn- ing disorders, and emotional problems (Bethell et al., 2011). Children with severe chronic conditions have complex care needs with great family demands (Capen & Dedlow, 1998). Some problems that result include the following:

• Lack of availability of qualified caregivers • Lack of privacy with care providers in the home • Focus on equipment rather than the child • Needs for emergency backup • Lack of respite care • Complications when the child gets intercurrent illnesses • The need for special educational services • The absence of health coverage for expensive regimes

Compelling demands and enduring stressors place great burdens on family units. Increasingly, chronic conditions once considered adult diseases (e.g., hypertension, type 2 diabetes) now occur in children as a result of lifestyle factors.

Management of Chronic Conditions

A wide range of chronic conditions exist with varying levels of severity and health impacts. Individuals with chronic conditions are daughters and sons, sisters and brothers, parents, grandparents, and members of nuclear, blended, cohabiting, single-sex, or other nontradi- tional families.

Care Coordination

Care coordination is of utmost importance in chronic disease management. Families find that many necessary activities become extraordinary tasks that they are unprepared to han- dle. Nurses working with families when a member has a chronic condition need to assist them to learn ways to share in care management. Ill persons and family members need knowledge and support about the disease and skills to manage care. Families need to know how to care for their member, but also how to care for themselves. The vigilance needed to respond to care needs can be exhausting. Conditions change over time and so teaching and counseling must be attuned to current science and best practices.

Family Involvement in Care

Nurses often speak about patient education, and when the condition is chronic then family education is needed as well. Chronic conditions are family matters! Problems confronted affect the multimember household. Family and individual needs vary even when the diagnosis is the

296 CHAPTER 11 ● Family-Focused Care and Chronic Illness

2910_Ch11_293-324 05/01/15 11:37 AM Page 296

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

same. Nurses who think family are not just sensitive to the individual’s pathophysiological changes, but also to socioemotional changes in the family unit. Altered treatment plans, vari- ations in medical management, and caregiver fatigue are problems to be faced. Families need attention, too (Box 11.1).

Research evidence is available to guide individual’s medical treatment from disease- focused perspectives. Growing amounts of evidence related to the benefits of technology and medical treatments in the care and management of chronic conditions are available (Clifford & Clifton, 2012; Smith, Soubhi, Fortin, & O’Dowd, 2012; Venter, Burns, Heffors, & Ehrenberg, 2012). For example, we know much about the pathophysiology of diabetes and best practices for management with diet and medication. However, we have long known that situational factors of eating and inappropriate food offers from others challenge one’s abilities to adhere to prescribed diets (Ary, Toobert, Wilson, & Glasgow, 1986). Newer findings suggest that adherence to prescribed medicine regimens is poor (Cramer, 2004).

The importance of a whole person approach to medical care is in its infancy (Hayes, Naylor, & Egger, 2012). Managing chronic illness touches every part of daily lives and af- fects household members differently. Therefore, thinking family means giving attention to the following:

• The family responses to chronic illness (Knafl, Deatrick, & Havill, 2012) • The importance of care coordination (Maeng, Martsolf, Scanlon, & Christianson,

2012) • The relevance of time in chronic care management (Barclay-Goddard, King,

Dubouloz, & Schwartz, 2012)

Individuals and families need help that fosters resilience and maintains as much normality as possible.

Financial Costs

Annual costs of medical care of chronic illness represents 75% of U.S. total annual health care spending, or approximately $1.5 trillion (Institute of Medicine, 2012). Evidence- based interventions are needed to attend to preventable conditions using lifestyle changes, such as eating nutritious foods, increasing physical activity, and stopping tobacco use. Public health practices and policies that support promising societal approaches for change are needed. Roles of families in prevention of some chronic conditions cannot be ignored. Nurses who think family are eager to teach family units about preventable risks, wellness, and lifestyle actions that promote individual and family health. When evidence to support

CHAPTER 11 ● Family-Focused Care and Chronic Illness 297

BOX 11-1

Family Challenges W ith Chronic Conditions

For a single diagnosis such as asthma or diabetes, the family must navigate many challenges over many years:

● Multiple doctors’ visits ● Medical directions of multiple specialists ● Costs of medications, treatments, and travel to receive care ● Potential hospitalization ● Separation from peers, school or work absences ● Physical and emotional challenges of the disease

2910_Ch11_293-324 05/01/15 11:37 AM Page 297

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

current practices is lacking, then we need innovation and new conceptual models to guide care. When it comes to chronic illness, we need to be creative and rethink care delivery so information sharing, skill acquisition, and medical services are delivered in the ways needed by family units. Long-held medical model thinking and traditional patterns of care delivery have focused on episodic care, mending acute care problems, and attending to single person needs. These attitudes are not always useful approaches for meeting chronic care needs. Chronic care management needs highly coordinated, evidence-based, family-focused care that prevents complications, reduces exacerbations, and addresses family households and family unit needs.

Chronic Conditions and Family Nursing Care

The Zimanske family serves as an exemplar case for this chapter to help readers better understand the many needs of a family living with chronic illness. This chapter explains differences in family care needs when illness is chronic rather than acute. Nurses who think family provide care to those with evolving chronic conditions. This Zimanske case study provides insights into how a childhood chronic condition affects members of the family unit differently over time.

Case Study: Family Perspective of Chronic Illness

For the Zimanske family, life changed with the diagnosis of a chronic condition for its youngest member, Michael (Box 11.2). Theresa, Michael’s mother, explains, “We were married, had a suburban home, two kids, a camper in the driveway. . . . Then, one day, everything changed for us.” Michael’s diagnosis of Schimke immune-osseous dysplasia (SIOD) came after months of health challenges and tests (Box 11.3). Life for this family was referred to as life before the diagnosis and life after the diagnosis. Life before the di- agnosis included plans for Michael and his older sister to grow up, experience youthful life activities, graduate from high school, begin families of their own, and grow old with their parents. According to Theresa, life after the diagnosis meant:

• Understanding the condition • Managing disease effects on his and our physical, emotional, and social well-being • Coming to terms with the possibility that he would not live the life we had

imagined • Living with dramatic changes in the experience of family life

Theresa explained that the family manages the illness but also contends with the logistics attached to the illness: “Michael’s total health care picture was intricately connected to the well-being of our whole family, both physically, emotionally, and socially.”

Stress and Coping

Ideas of stress and coping have been studied since the 1930s as researchers were interested in ways that families contended with the loss of income and stress of unemployment during the Depression Era (Angell, 1936; Cavan & Ranck, 1938). Research identified that well- organized and cohesive families before the depression were the most capable of dealing with the stress of economic losses and family struggles. Early work on family stress factors was done by Rueben Hill (1949). Hill’s early work (refer to Chapter 7) was about the ways

298 CHAPTER 11 ● Family-Focused Care and Chronic Illness

2910_Ch11_293-324 05/01/15 11:37 AM Page 298

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

CHAPTER 11 ● Family-Focused Care and Chronic Illness 299

BOX 11-2

Family Circle

Michael, son of Theresa and Don Z imanske, brother of Jessica Z imanske, was diagnosed in 1999 with SIOD at the age of 7 following a 2-year diagnostic process, which began at his kindergarten physical examination. At the age of 5, Michael was the fastest runner on his T-ball team. By age 9, he was physically confined to a wheelchair, but his resilient spirit was not. Michael traveled a medical path that constantly changed due to the progressive symptoms caused by SIOD with a life-limiting prognosis that did not define him or his family. Seeking treatment he challenged medical providers to see beyond his diagnosis and see him as a boy with family and friends in a life outside of medical trauma and disease. In 2005, after suffering severe complication due to SIOD, Michael went to his heavenly home. He left a legacy of hope, which resulted in the Be the Change campaign, completely inspired by the life of a change-maker, Michael Z imanske.

After reading this chapter, answer these three questions:

1. Identify three ways using family-focused care when caring for persons with chronic illness differs from care guided solely by the medical model perspective.

2. Describe three areas of resilience you have identified in the Z imanske family. 3. Give an example of how nurses who use family-focused care can attend to the individual with

a chronic illness in a way that positively promotes coordinated care.

Identify two similarities and two differences between Michael’s family's needs and another family where an adult has a chronic illness.

BOX 11-3

Schimk e Immune-osseous Dysplasia (SIOD)

According to Genetics Home Reference (ghr.nlm.nih.gov, GeneReviews), Schimke immune-osseous dysplasia (SIOD) is a rare, autosomal recessive condition characterized by short stature, kidney disease, and weakened immune system. This rare inherited condition, 1 in 3 million births, causes multiple hyperpigmented macules, characteristic facial features, progressive renal failure, decreased white blood cell count, recurrent infections, atherosclerosis, and reduced blood flow to the brain leading to cerebral ischemia (Boerkoel et al., 2001; Lucke et al., 2006; NIH, 2014). Those with the disease have normal intellectual and neurological development for a time. Kidney disease often leads to renal failure and end-stage renal disease. A shortage of T cells that help the body fight infection causes a person to be more susceptible to illness. Individuals with SIOD may develop atherosclerosis, cerebral ischemia and strokes, hypothyroidism, and hypoplastic pelvis. Abnormalities of hip bone development may lead to limitations in mobility and require hip replacements. Kidney transplantation may be required as a result of renal disease, and bone marrow transplantation may be indicated. SIOD is progressive, incurable, and often fatal. Few individuals with this condition survive beyond 20 years with some dying in early childhood and those with milder late-onset forms of SIOD surviving into adulthood with treatment of renal disease.

families coped with separation and reunion during wartime. His ideas have remained vir- tually unchallenged over time (Box 11.4).

Stress can lead to a family crisis when usual coping mechanisms are not effective in re- solving problems. Stress is linked with events that upset usual family life patterns and affect members’ roles, behaviors, and emotional strengths. Crises shake the family foundation and often create great levels of disorganization. When chronic disease management occurs, it calls into action abilities to organize and manage effectively. If members view the stress

2910_Ch11_293-324 05/01/15 11:37 AM Page 299

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

of situations in controllable parts, they seem more successful in managing. Families that receive a diagnosis of a chronic illness in a member may experience various types of stress and may need help in coping.

Meanings of E vents

Stress and coping often focus on ways people process meanings of events and readjust to changing situations. A number of highly valued conceptual care models can help nurses describe, explain, and predict individual and family’s response to chronic illness (Antonovsky, 1979; Lazarus, 1993; Selye, 1976). The ways situations are perceived and unique responses can influence whether an illness is viewed as stressful or a crisis. When families are overwhelmed or exhaust their resources, they are in a crisis state (Boss, 1988). Loss often occurs with chronic conditions. One form of loss, called ambiguous loss, occurs when there is no closure and people get stuck or are unable to move on with their lives (Boss, 2000). For example, how does one deal with the uncertainty of a soldier missing in action? Or not knowing whether your loved one died in the tragedy of the Twin Towers on September 11, 2001? How does an adult child cope with a parent with cognitive loss or a parent cope with an adult child with schizophrenia? Sadness, emotional suffering, am- bivalence, and misgivings are often experienced. Doubts, fears, and heartaches get resolved differently. Family nurses are attuned to life transitions caused by chronic illnesses. Nurses who think family target family strengths and areas of resilience.

Family R esilience

The ability to withstand and rebound from adversity is called resilience; it is a positive way to manage stress. Family resilience focuses on the ability to “rally in times of crisis, to buffer stress, reduce the risk of dysfunction, and support optimal adaptation” (Walsh, 2012, p. 175). Resilience views families not as dysfunctional or damaged but as capable and able to skillfully survive stressors. Resilience and family strengths are important to in- dividuals, family units, and the communities where they live (Box 11.5).

When nurses take a resilience perspective, they focus on family members as part of a re- sourceful whole. This is particularly important for families with chronic conditions. It helps when nurses recognize the family as capable of thriving despite the challenges, while still acknowledging the difficulties faced on a day-to-day basis. Resilience enables families to respond favorably even in the most troubling or difficult situations and suggests areas for

300 CHAPTER 11 ● Family-Focused Care and Chronic Illness

BOX 11-4

Assumptions Link ed W ith Stress

Reuben Hill’s (1949) original stress model made several assumptions:

● Unplanned and unexpected events can be more stressful than those anticipated. ● Stressors focused on one family member versus the whole family have different forms of

related stress. ● Severity of stress makes a difference. ● Stressors that occur within the family (e.g., serious illness) are more stressful than events that

occur outside the family (e.g., war, economic recession). ● Perceptions of stress are increased when no prior experience in handling a situation exists and

reduced if the family believes they can handle the situation. ● Stressors that are ambiguous are more challenging than ones that are more predictable or less

ambiguous.

2910_Ch11_293-324 05/01/15 11:37 AM Page 300

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

assessment and nursing actions (Simon, Murphy, & Smith, 2005). Resilience is not static— it is a dynamic quality sensitive to the changes across time at the individual and family level (McCubbin & McCubbin, 1989). As families face long periods of stress, strain, or transition, a pileup effect can cause difficulty in adapting. Families can use strengths, har- diness, and abilities to adapt but they need adequate resources and supports. Nurses can assist the family to resolve problems, make wise decisions, and manage crisis situations.

Focus on Strength s

The traditional deficit or problem-focused care models rely on symptom management and attempts to fix what is wrong. Stress assessment must include the individual and family members, and identify specific factors that are troubling or are strengths to build upon. Resilience suggests that focus on family strengths provides a useful way to direct nursing actions. Multiple factors influence responses to individual needs and family members can pool their strengths to them. Some families might need referrals for additional support. As nurses think family they help them identify problems and gain skills to cope effectively. If pain is a problem, nurses can help family units identify ways, besides medications, to man- age symptoms. A critical appraisal of the use of family resilience in chronic pain manage- ment found that focusing on strengths offers helpful strategies (West, Usher, & Foster, 2011). The individual-nurse-family partnership can be used to identify needs, set goals, plan care, and evaluate outcomes.

Family Models

Many theories and conceptual models help nurses understand chronic conditions and func- tional needs. Several relevant care models have been introduced (Chapters 7 and 8). The Family Management Style Framework (FMSF) (Knafl & Deatrick, 2003; Knafl et al., 2012) is especially useful for thinking about care management of a child with a chronic condition. This model has been applied to family management of lethal congenital childhood condi- tions (Rempel, Blythe, Rogers, & Ravindran, 2012), families caring for older adults with dementia (Beeber & Zimmerman, 2012), and sudden death of a family member (Wiegand, 2012). Family management style is the way family members define the situation, manage conditions, and view consequences (Knafl & Deatrick, 2003). Definition of the situation includes beliefs about cause, seriousness, and predictability of the illness. Views of the ease or difficulty in managing a condition and normality are considered. Management behaviors include values and priorities related to illness management and the extent a family has de- veloped routines and strategies to manage. Perceived consequences are views about the balance between illness management, other life aspects, and future implications (Knafl et al., 2012). Nurses can use the FMSF to realistically identify strengths and needs in chronic disease management.

CHAPTER 11 ● Family-Focused Care and Chronic Illness 301

BOX 11-5

Traits of Resilient Families

● Ability to adapt to stressful situations ● Actions that demonstrate care for one another ● Capacity to communicate openly and honestly with one another and manage conflicts ● Flexibility in assuming needed roles and responsibilities ● Connections to larger social and community groups that are enriching

2910_Ch11_293-324 05/01/15 11:37 AM Page 301

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

The Family Health Model (FHM) discussed in earlier chapters uses an ecological view to identify interdependent factors linked with chronic illness. The model’s three domains, contextual, functional, and structural, can be used to assess, plan coordinated care with multiple family members, identify appropriate nursing actions, and evaluate individual and family outcomes in different realms of family life (Denham, 2003). As you read about the Zimanskes’ experience, consider ways the FHM can guide family thinking. For example, the family context enables the nurse to learn about the family household, financial con- cerns, needed member resources, transportation to medical visits, and community re- sources. Assessment of the functional domain helps the nurse learn about member roles, communication styles, family strengths, and ways the chronic condition influences member interactions. The structural aspect can help the nurse identify which usual family routines might be disrupted and plan new ones for managing the chronic illness. The FHM can guide nurses as they assist families in managing stress, developing resilience factors, and optimizing their family management style (Box 11.6). Nurses can use the FHM to collab- orate with family units to manage care needs.

Diagnosis

For the Zimanske family, the diagnosis of SIOD affected every aspect of family life. Michael was small at birth, born 6 weeks prematurely, but otherwise considered healthy and nor- mal. His size, sensitivity to light, and poor feeding were initially viewed as factors linked with early birth. His parents, Theresa and Don, and sister Jessica welcomed him with hope for a “normal” family experience in Minnesota’s suburbs.

Michael was a healthy toddler, visited his primary care provider regularly for well-child checks, and had few minor illnesses. At his kindergarten checkup, the pediatrician noticed Michael had not grown since the last visit and ordered bone radiographs. Later that week, Michael visited his dentist and had x-ray films of his teeth, part of a normal dental evaluation. Noting abnormal development of Michael’s teeth and jawbones, the dentist referred the family

302 CHAPTER 11 ● Family-Focused Care and Chronic Illness

BOX 11-6

Evidence-Based Practice and Chronic Conditions

Family-focused nurses realize that ideas about chronic care are based upon evidence. Consider these two examples:

1. What are the relationships between having a child with a chronic condition and family functioning?

Based on a secondary data analysis from six independent studies, families of children with and without chronic conditions do not differ significantly from one another in the usual ways families manage daily activities. However, risk factors identified that seem to result in greater family difficulties when coping with chronic illness include older child age at diagnosis, fewer children in the home, and lower household income (Herzer et al., 2010).

2. Does family-centered care improve outcomes for children with chronic conditions and families?

A systematic review of evidence related to families of children with chronic conditions found positive associations between family care and improved efficiency in service use, health status, satisfaction, access to care, communication, systems of care, ways families function, and family outcomes (Kuhlthau et al., 2011).

2910_Ch11_293-324 05/01/15 11:37 AM Page 302

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

to the University of Minnesota Medical Center for further evaluation. A genetics consult led to additional tests and the discovery of proteinuria, suggesting abnormal kidney function. The geneticist found Michael’s abnormal findings in several body systems that seemed unrelated. Standard genetic testing failed to identify any genetic conditions. The geneticist found Michael’s abnormal findings in several body systems that seemed unrelated (Fig. 11.1).

THERESA: “From the age of 5 to 7, we were chasing separate issues that were like pieces of a puzzle that didn’t fit. There were so many specialists, so many issues, and no one could figure out how they were connected. The challenge for us as a family was that each specialist was only seeing part of the picture. The nephrologist told us that Michael’s kidney function was declining and he would probably eventually need a kidney transplant. The orthopedist focused on Michael’s worsening hip pain and sent us all over the cities to see different bone specialists. Michael’s geneticist said there must be some reason that all of this was happening to Michael and she was determined to find an answer.”

As the geneticist traveled around the country to professional conferences, she made a point to ask physicians if they had seen a case like Michael’s. Finally, at a conference in Texas, she met a research team who knew of a child with similar issues in Canada. This patient had been diagnosed with SIOD. After additional testing, Michael was finally diagnosed with SIOD at 7 years. Imagine the stress this family faced in 2 years of searching for a diagnosis. The diagnosis explained the medical issues, but the illness journey had just begun. Once Michael was diagnosed, his older sister and parents faced dramatic life changes (see Box 11.3).

Chronic Conditions and Ecological Perspectives

The Family Health Model (FHM) can help the nurse understand multiple interactive factors relevant to the Zimanske family’s health concerns (Denham, 2003).This ecological per- spective reminds us that family members have relationships within and outside the house- hold and these interactions influence family health over time (Bronfenbrenner, 2005). This perspective allows nurses to identify interdependent family health factors linked with

CHAPTER 11 ● Family-Focused Care and Chronic Illness 303

FIGURE 11-1 Michael: A child and family live with a chronic condition.

2910_Ch11_293-324 05/01/15 11:37 AM Page 303

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

chronic conditions (Denham, 2003). The Zimanske family faced many frustrations in deal- ing with unconnected health care providers who never spoke to each other as they sought a diagnosis. Each was capable in their area of expertise, but they didn’t connect the various symptoms. Family frustration and anxiety were high as they dealt with uncertainties from a growing pile of questions.

O ther Factors Affecting Families With Chronically Ill Members

Most care for individuals with chronic conditions occurs in the home and community. When a medical model of care is used, illness care management focuses on prescribed med- ical regimens and adherence. From an ecological perspective, care management refers to daily life experiences. Family-focused care requires the nurse to consider ways care man- agement fits or does not fit into the family life and what negotiations are necessary (Baile, Tacchi, & Aaron, 2012; Sperry, 2011). Although families spend time with health profes- sionals, more time is spent in their household interacting with social networks within their community. Problems and decisions are often handled alone. Family nurses consider ways time is regularly organized and how activities, resources, responsibilities, and roles are used to manage the disease. Family members have many conflicting responsibilities and may lack needed resources or supports. Some families can experience a pileup of troubling fac- tors over time. For example, diabetes management requires altered meal schedules, food choices, physical activities, and medical care, and affects social aspects. If family members don’t understand or refuse to support the member with a chronic disease, then this person may have more difficulty making the needed lifestyle changes.

Sociop olitical Factors

Social and political factors have influenced the ways families manage chronic conditions. Several poignant examples of issues that affect families raising children with chronic health conditions are available (Ray, 2003). For example, resources for management of certain conditions are often allocated based on eligibility criteria. Treatment for a mental health concern may require the family to paint an extremely dire picture that exaggerates, em- phasizes, or embellishes facts about behaviors. Often individuals cannot receive emergency mental health care unless the person is suicidal or threatening others.

Federal or state policies that budget for community-based services may affect care access for some persons with chronic conditions. Choices far removed from families’ lives can sig- nificantly influence the availability of supports. Availability of health insurance or cash or access to health care professionals or specialists affects the care individuals receive. Often seemingly unrelated systems and processes affect families’ abilities to care for their members.

Societal norms that recognize maternal caregivers may overlook roles of fathers or other caregivers of children with chronic conditions; they may be less visible and receive less sup- port (Ray, 2003). In the United States, although the Family and Medical Leave Act (FMLA) of 1993 requires large employers to provide employees job protection and unpaid leave for medical reasons, this is unevenly applied by states’ parental leave policies. Employer’s discretion could mean ineligibility for medical leave without losing your job. Laws have been unevenly applied for GLBT (gay, lesbian, bisexual, transsexual) persons, civil partners, foster or adoptive parents, and grandparents who provide care for those that are ill. Social and political contexts—from an ecological perspective—can influence ways families provide chronic care in different ways.

School attendance takes up a large part of children’s days, a time when they are sepa- rated from the family household and subject to potentially different societal, physiological, and psychological pressures. School attendance can be affected in direct proportion to the

304 CHAPTER 11 ● Family-Focused Care and Chronic Illness

2910_Ch11_293-324 05/01/15 11:37 AM Page 304

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

severity and visibility of a chronic condition. The following are some of the factors influ- encing school experiences:

• Openness of teachers to learn about a child’s needs • Comfort of the school system to manage the child’s condition • Intensity of medication or treatment needs during the school day • Child’s abilities to participate with others • Child’s self-care needs (e.g., hygiene, meals, mobility, disruptive behaviors) • Perceptions and tolerance for differences by teachers, school administration, and class-

mates • Availability of health care assistance

Adults might experience similar concerns as they try to remain employed. Children and adults with medically complex conditions often require frequent medical visits to multiple providers. Absenteeism can mean falling behind in learning for children and job loss for an adult. This expensive care can be a financial burden to families. Care needs can hinder school attendance or cost lost work time.

Importance of School for Children With Chronic Conditions

Michael’s ability to attend school and be with friends was important to his quality of life. Staying in school, as his condition progressed, was a growing challenge. As more severe neu- rological problems developed, he became less able-bodied. SIOD affects the vascular system and persons with this condition often develop arteriosclerosis and cerebral ischemia due to decreased blood flow to the brain. For Michael, this meant transient ischemic attacks (TIAs).

THERESA: “One day the school nurse called and told us that when Michael was writing, the pencil kept dropping out of his hand, and he was slurring his speech. We took him to the emergency department and found out he was having TIAs. This meant seeing a whole new set of specialists. He was put on new medication to prevent blood clots. The TIAs were minor and he quickly returned to normal after the attacks, but the TIAs were progressive. This is when everyone got scared to have him around. I thought, ‘Should he be playing? Should he be going to school?’ But we knew that for Michael’s best quality of life, he needed to go to school and be with friends. I made a deal with the school. I quit my current job and found one closer to the school so I would never be more than 5 minutes away. If anything happened they could call me and I would be there. I was his transportation. He had to go to school.”

Stigma Associated With Chronic Illnesses

Nurses who think family acknowledge the reality of social norms and stereotypes. Stigma is a predominant social attitude toward people who are different, including those with chronic conditions (Seligman & Darling, 2007). Some chronic conditions are more visible than others. For example, persons with mental illness experience stigma comparable to persons with AIDS or ex-convicts (Baldwin, Schultz, Rogers, & Rogers, 2011). Mental ill- ness or cognitive disabilities make a person “stand out” due to unusual behaviors or speech. For example, persons with schizophrenia or psychosis may hear and respond to voices un- seen by others. Those with cognitive disabilities may act younger than actual ages. Even some health professionals often hold more negative attitudes toward persons with disabil- ities (Seligman & Darling, 2007).

Stigma is a product of social norms and stereotypes. It affects families of individuals with chronic conditions by what has been described as “courtesy stigma” (Goffman, 1963).

CHAPTER 11 ● Family-Focused Care and Chronic Illness 305

2910_Ch11_293-324 05/01/15 11:37 AM Page 305

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

This refers to avoidance, rejection, or ridicule that extends to others associated with a per- son who is viewed differently. Parents and siblings of children with disabilities may be viewed as troubled or burdened, or brave and courageous, by persons who have not met the family (Seligman & Darling, 2007). Thinking family implies being considerate of dis- parate appearances or actions and seeking understanding about the troubling aspects that encircle families when a member has chronic illness. It is important that nurses understand that families vary widely and things like cultural and the nation where one resides influ- ences the ways nursing care is delivered (Box 11.7).

Facing Stigma in Daily Life

When he was in elementary school, Michael’s skeletal issues with his hips became a focus around which he would plan his daily activities. THERESA: “Because of hip pain, he knew he could only walk a certain amount each day, so he would plan his day in the mornings before he got out of bed. He would slide around on the floor at home to save his ability to walk for school and other activities. Eventually he got a scooter. Then the Big Day came in fourth grade when he had to go to school in a wheelchair. He wanted his friends to treat him the same but it actually turned out to not be a big deal. One day I watched from a dis- tance as Michael and his friends made their way down the school hallway. They were trip- ping all over him, laying on his chair and playing. I thought, ‘I need to talk with the teachers and ask the kids to be careful around him.’ One day I went to a playground and watched him. I could see his school friends saw Michael and not the wheelchair. This was a good thing. It was a learning process for all of us.”

Family Functioning With a Chronically Ill Member

Using an ecological point of view helps us understand that when a member has a chronic condition family units must make adaptations to medical and lifestyle needs. Chronic conditions often alter relationships and roles. A mother with a chronic condition may not parent in ways others imagine. Family roles and responsibilities may be altered when a

306 CHAPTER 11 ● Family-Focused Care and Chronic Illness

BOX 11-7

Family Tree

Darunee Jongudomk arn, RN, PhD (Thailand)

Dr. Jongudomkarn is an Associate Professor in the Faculty of Nursing at Khon Kaen University in Thailand, and served as the director of the master’s degree program in Family Nursing (2003–2010). In 2003, she led a study about the competency needs of family nursing and developed a curriculum to guide all master’s level family nursing programs in Thailand. Her efforts successfully preserved the education and advanced practices of family nursing in Thailand. Her scholarly work with families focuses on pain management, quality of life, gender, and women’s health. She has published an integrative review of family nursing interventions in Thailand as well as several other family nursing articles in the Thai language. She and her colleagues have developed the Khon Kaen University Pediatric Pain Assessment Tool, the Khon Kaen University Family Q uality of Life Scale, and the Khon Kaen University Family Health Nursing Model. In 2003, Dr. Jongudomkarn established the Family Nursing Society of Thailand, one of only two national family nursing organizations in the world: http://www.thaifamilynurse .org/index.php/en/. This organization has over 300 members. In 2007, she was awarded an Innovative Contribution to Family Nursing Award from the J ournal of Family Nursing at the Eighth International Family Nursing Conference to honor her foundational leadership in family nursing in Thailand.

2910_Ch11_293-324 05/01/15 11:38 AM Page 306

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

member has a chronic condition. Family nurses recognize that the person with chronic needs can influence family stress. Nurses who think family assess family processes, member interactions, and individual roles when planning nursing actions and working with individuals to set goals for care outcomes.

Theresa described a provider interaction: “As we were leaving the room, right after re- ceiving the diagnosis, our doctor turned to us and said, ‘I feel it’s necessary to tell you that most marriages involved in chronic illness situations like this end in divorce.’ I thought, what else? My husband and I didn’t talk all the way home. We were overwhelmed with informa- tion.” A misperception by some providers and families is that a member with a chronic con- dition is harmful to marriages and families (Eddy & Walker, 1999). In the 1980s, research about children with disabilities was guided by assumptions that a child with a chronic con- dition was tragic and detrimental to family health and marriage (Risdal & Singer, 2004). Some care providers still believe they assist families by preparing them for negative outcomes. However, current research underscores the idea that family responses to chronic conditions range widely with positive adaptations and strengthened families (Risdal & Singer, 2004). Nurses who focus on family strengths can be most helpful to families.

Providing Useful Nursing Actions

Stress can be associated with chronic conditions. Nurses who think family realize that the most effective way to support a family unit is by identifying strengths. These are used to identify strategies for adapting in the unique ways needed to manage chronic conditions. Theresa recommends using a positive approach to family members. For example, a nurse could say, “Through our discussions, I see you are a loving, supportive couple. I believe you will endure the challenges of this diagnosis.” This recognizes the positive relationship strengths, commends the family, and lends hope for an uncertain future.

The family not only faces uncertainties with an initial chronic diagnosis, but must also deal with changes as the chronic condition shapes the developing person, family unit, and daily family life. Children with chronic conditions may not progress through typical stages and may fail to meet developmental milestones at the same pace as peers (Larkin, Jahoda, McMahon, & Pert, 2012). Chronic conditions can influence child development and phys- ical or cognitive limitations (Friedman, Holmbeck, DeLucia, Jandasek, & Zebracki, 2009). Adults living with chronic conditions can experience similar concerns and need family sup- ports. Future uncertainty can weigh heavily on a family's future. Healthy children aspire to leave the family home as they enter adulthood; children with chronic conditions may have different timelines. Leaving home and independence, particularly if the condition has cognitive or physical limitation issues, may be impossible for some children with chronic conditions and create great disabilities for older persons as well. The uncertainty of a chronic condition may interfere with things like activities of daily living, education and employment, caregiving tasks, and family vacations

Living With O ptional Plans

THERESA: “With every planned event, we always had a plan B because of Michael’s chang- ing and progressive condition. His sister often took the brunt of this constantly altered ac- tivity. Our daughter grew accustomed to taking ‘the back seat’ in family decisions. Choosing where to sit at a Twins baseball game, we could not consider preferred seating because we had to sit in the wheelchair section. Family outings and vacation choices were made based on wheelchair accessibility. Even decisions about daily chores needed to be altered. Our daughter understood but at times she struggled with the fairness of the choices.”

CHAPTER 11 ● Family-Focused Care and Chronic Illness 307

2910_Ch11_293-324 05/01/15 11:38 AM Page 307

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Life span developmental theory considers the timing of normal or usual developmental stages and identifies if the event occurrence is on-time or off-time (Mortimer, 2012). Tran- sitions that do not occur at an expected time are considered off-time and might require special focus. Family development theory refers to transitions through normative events versus non-normative ones that might occur due to chronic conditions (Gavazzi, 2011). Chronic conditions can delay or alter family milestones. Launching is the time when fam- ilies help young adults transition to independence; they marry, attend college, or acquire one’s own apartment. If events can never occur or are off-time, they are viewed as non- normative. Family nurses can teach family members ways to plan for on-time and off-time transitions and milestones.

THERESA: “At age 5, Michael was the fastest runner on his T-ball team and by age 9 he was confined to a wheelchair. With chronic illness some things seem to stand still, frozen in time while other things are fast forwarded. The patient and family deal with both at the same time; wishing for what was and coping with what is. It was a delicate balance between allowing Michael to be age appropriate and attend events like school dances and a Friday night movie with friends, as we considered the “what-ifs” of his multilayered, life-limiting disease.”

In families in which a child has a chronic condition, launching into adulthood can be delayed or complicated. In families in which an adult has a chronic condition, normative events such as retirement, grandparenting, or experiencing an “empty nest” might happen off-time or not at all. Daily life can be filled with unexpected things as activities are inter- rupted; frustration and conflict must be faced. Nurses who think family help them evaluate resource needs and support them through transitions, whether on-time or off-time.

Obstructed Routines of Families With Chronically Ill Members

An ecological perspective is useful in thinking about daily life in family households and ways systems can be supportive or threatening. The Family Health Model explains ways family health routines and rituals are important in daily life (Denham, 2003). A chronic condition often requires adaptation or modification of old routines and structuring of new ones. Some routines change dramatically and new ones must be created. Routines are habits or daily practices done regularly without conscious thought and it is hard to change things we do not think about. Routines are like our skin, we may not notice them until they are disrupted—they are part of usual life. They might be protective or give a sense of security or normality. Some chronic conditions call for radical changes that can seem as painful as removing skin. A family meal of fried chicken, mashed potatoes, gravy, and homemade biscuits for Sunday dinner may be the family tradition, a family health routine. This is more than a meal, it is part of family identity—what we do as a family. If dietary modifi- cations are needed, then this routine and others might need to be altered. Routines can be underlying causes for chronic conditions, part of self-management, and very difficult to alter.

What family routine changes might be needed if an adult is diagnosed with type 2 dia- betes? Is this different from a family with a child diagnosed with type 1 diabetes? What happens if a member must be fed through a gastrostomy tube or needs daily hemodialysis? What kinds of changes are called for in these families? Family-focused care uses intentional actions to assess, set goals, and plan daily routines. Routines have many threads, being woven from our culture, values, beliefs, attitudes, and motivation. Deconstruction of old routines and establishment of new ones must be planned in far greater detail than went

308 CHAPTER 11 ● Family-Focused Care and Chronic Illness

2910_Ch11_293-324 05/01/15 11:38 AM Page 308

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

into creating the original routine. Altering routines is a family matter that requires coordi- nation and willingness to change. Family members usually want to help, but may not know the best things to do. In some families, members can be highly resistant, create temptations to ignore desired care needs, and even be subversive (Denham, Manoogian, & Schuster, 2007; Manoogian, Harter, & Denham, 2010). Some family members do not view the needed changes as their problem. Nurses who think family recognize these challenges and collaborate to identify the best ways to meet needs.

Reconstructing Family Health Routines

Nurses who think family focus on family health routines as they partner with families to set goals, plan actions, and reconstruct new life aspects to effectively address medical needs linked with chronic conditions. Individual-nurse-family collaboration can foster conversa- tions around routines tied to dietary requirements or restrictions. Favoring a positive stance can help family units create action plans with measurable goals to achieve. For example, dietary changes are challenging and have deeply associated linkages with family lives. Food consumption revolves around beliefs and associated values and eating with others occurs regularly. It is a social activity and changes need to consider social aspects. Family meals are not easily altered. In order to make effective changes, families need information, skills, motivation, goals, and plans for action.

THERESA: “Social activities dramatically changed. Birthday party invites for Michael and sleepover events got complicated and eventually stopped. My friendships got limited because there wasn’t free time. My husband worked overtime whenever possible to support us. This was especially important when I started working part-time to be home with Michael and took multiple leaves of absence without pay as his illness progressed. The dis- ease meant Jessica had to handle things at home—phone calls, housekeeping chores, and others in my constant absence. Mother-daughter time with Jessica was altered because I was so often away with Michael. On Jessica’s 16th birthday, I was at the hospital with Michael. My husband and I were consistently apart because of medical appointments. One year the flowers my husband bought for our wedding anniversary were delivered to the hospital because I was there with Michael.

The Zimanske family tried to maintain family routines that enabled them to manage Michael’s condition and retain as much normality as possible. Michael played T-ball and golf with adaptations as his physical condition changed. He had to give up dreams to play football but learned to love wheelchair basketball. When he was in the hospital, Michael’s sister attended social activities and church functions (Fig. 11.2). She had supportive rela- tionships beyond the family.” While adaptations were made, things were seldom easy.

Family Member Care for Self

THERESA: “Consistently I was told by medical providers that I needed to take care of myself. How could I do that? When Michael was in the hospital, most days the first op- portunity for a meal was at night with only vending machines available. Often the only sleeping option was a plastic, not-so-easy-to-recline chair next to Michael’s bed. My blanket was often a sheet from Michael’s bed because I couldn’t find anything else.”

Nurses can anticipate some needs of the family, especially for those spending the night with a child, and help provide a healing environment each day. In the clinic, ask family members how many appointments they have that day. Be concerned about how much time they spend in the clinic. Stress affects family members' abilities to comprehend information and cope. Chronic fatigue can be masked but it adds barriers.

CHAPTER 11 ● Family-Focused Care and Chronic Illness 309

2910_Ch11_293-324 05/01/15 11:38 AM Page 309

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

The nurse who thinks family recognizes ways care environments limit family’s abilities to continue family health routines. This requires more than passing suggestions; it requires intentional dialogue to ascertain needs. Caring for a chronically ill member puts others at risk for sleep deprivation, poor nutritional intake, fatigue, and general neglect of their physical, emotional, and social needs. Nurses who think family genuinely respect family’s comfort needs and know some situations can be overwhelming. They know it is not always easy to ask for help. Care environments can look like well-oiled machines with clinicians continually attending to tasks. This might be mysterious and confusing as families seeking services erroneously interpret actions. Nurses can explain, show care and kindness, and communicate.

Family Stress and Uncertainty With Chronic Conditions

Family response to chronic conditions depends upon unique family unit factors (e.g., age of onset, course, outcome, degree of incapacitation, complications, supports). Chronic condi- tions can have acute onset, such as in congenital conditions or traumatic brain injury, or a gradual onset such as muscular dystrophy (Rolland & Walsh, 2006). The course of a chronic condition may be progressive, constant, continuous, relapsing, or episodic. Outcomes may result in comorbid conditions, a shortened life span, or death, or may not affect the life span at all. Disabilities can occur in cognition, movement, sensation, and social interactions. While many have few daily limitations from a chronic condition, others may have some form of stress and others have incapacitation of some degree. Coping and planning are affected by ambiguity about the future and the time that will elapse before things change (Rolland & Walsh, 2006). Family care addresses the diverse ways a specific condition manifests over time and the expressed needs of a particular family (Fig. 11.3). In the Zimanske family, Michael’s illness had a gradual onset, and symptoms emerged over time as his condition worsened.

Living With a New Normal

THERESA: “Normal was like a roller-coaster during Michael’s diagnostic process with many ups and downs. Normal abruptly stopped when the rare disease was named. There is nothing normal about a health care experience. Michael deserved and needed normal in

310 CHAPTER 11 ● Family-Focused Care and Chronic Illness

FIGURE 11-2 Michael and his sister Jessica.

2910_Ch11_293-324 05/01/15 11:38 AM Page 310

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

the midst of abnormal. One of my roles was to provide him and my family with some nor- mal. This meant medical providers had to help because we were most often in their envi- ronment and not ours. Patient-centered care coordination was vital to keeping some normality in our life. Sometimes medical providers pretended our life was normal and gave little thought about our needs. This often upset schedules. At times Michael was uncoop- erative because he felt unheard and not valued. Having blood draws three times a week isn’t normal. Going to dialysis 4 days out of 7 is not normal. Michael needed medical providers to acknowledge and say to him, this is not normal. This is a big deal. I needed relationships I could trust and depend on to redefine normal.”

Given the rare occurrence of Michael’s condition, the family did not know what to expect. How long would he live? How would his changing conditions affect us? Michael’s condition was progressively incapacitating and fatal. It was important for nurses to consider what un- certainty means to the family. Nurses who think family know they cannot always provide an answer or a solution, but honesty, trust, and availability to listen are important.

Living With a Fatal Diagnosis

THERESA: “Consider what the word fatal means to a family. Ask what questions we have. Uncertainty is lessened with honest conversation. Admitting uncertainties and limitations develops strong relationships between providers and family. Trust is needed. Sometimes medical providers made assumptions and judgments about us. We sometimes found out through frustrating conversations that some knew nothing about Michael’s rare disease. Some admitted their limitations. For example, they might say, ‘I never heard of this diag- nosis’ or ‘I don’t have any experience with this disease.’ But if they made a promise to get educated, this suggested that they wanted to be our partner. Trusting your caregiver allows patients and families the freedom to admit their limitations and creates a relationship that contains no judgments or assumptions. It establishes an honest climate of ‘I will give my best, but I’m not perfect’ between persons in the health care relationship. Honesty becomes the one thing each can be certain of.”

Nurses who think family avoid stereotypes and assumptions about family situations. These nurses are authentic, face situations, do not placate people with thoughtless actions,

CHAPTER 11 ● Family-Focused Care and Chronic Illness 311

FIGURE 11-3 Michael's family.

2910_Ch11_293-324 05/01/15 11:38 AM Page 311

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

and welcome questions even when they lack answers. Nurses who think family reflect on what it must be like living in the other’s shoes. They listen and help find needed informa- tion. Nurses who think family respect the experience of those receiving care and realize they have expert knowledge about the person receiving care. One’s national origin has great influence on the ways family care is understood and important for nurses to recognize when caring for individuals that have immigrated from other places (Box 11.8).

Uncertainty

THERESA: “On Halloween, Michael developed an infection. We knew that if he had any fevers we had to catch it right away or the problem would become serious. That night we went to the emergency department, he was really sick. He had an infection and his kidneys were shutting down. He went to get an MRI (magnetic resonance imaging) scan and afterward he had a big stroke. He thought his name was Robert. They started talking about dialysis. They were trying to adjust his medications, but no one really knew what to do. SIOD is such a rare disease that there was no treatment guidance. It was a guessing game. They said they could ‘try this’ or ‘try that,’ but there were no guarantees. We were asked to make decisions about his treatment. There was so much uncertainty. It was horrible. That’s when I learned I had to trust my gut. We were going on faith now and we had to trust in God.”

“Michael’s condition became increasingly unstable. He received dialysis and was in the hospital much of the time with unstable blood pressure, increasing numbers of strokes, and complications with fluid status. He attended school a few hours a day when he was not in the hospital. The school adjusted his individualized education plan (IEP) to lower expectations for his academic achievement. This is when things started to shift personally for us as a family. Now, the question was ‘Will he survive?’ We had to rethink how we were going to treat him medically, emotionally, and physically.”

Although Michael’s case is about a rare illness, similar things also happen with other more common chronic conditions. Uncertainty is characteristically a part of the experience. Letting families voice concerns, listening to what is said, and managing awkward silences are part of family care.

312 CHAPTER 11 ● Family-Focused Care and Chronic Illness

BOX 11-8

Family Tree

Margareth Angelo, RN, PhD (Braz il)

Dr. Margareth Angelo is a Professor and Director of the Department of Maternal-Child and Psychiatric Nursing at the University of Sã o Paulo, Brazil. For over 20 years she has taught family nursing intervention and research methods to undergraduate and graduate students. She is the founder and coordinator of the Group of Studies on Family Nursing. This group brings together teaching, research, and clinical activities related to the family phenomena such as the health-illness situation, family nursing interventions, family nursing education, and qualitative research methods. Dr. Angelo has authored several book chapters and numerous articles published in national and international nursing journals. She has received awards and international recognition for her work in family nursing development in Brazil. Her academic work includes international exchange activities and research collaboration, developed as a visiting professor at universities in Latin America and Europe, and mentorship of graduate students from Portuguese- and Spanish-speaking countries. In 2010, she worked with others at the School of Nursing to host a First International Symposium on Family Nursing in Sã o Paulo, Brazil. In 2012, she was elected to the Board of Directors for the International Family Nursing Association.

2910_Ch11_293-324 05/01/15 11:38 AM Page 312

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Hearing the Story

Families with members who have a chronic condition need nurses who understand the family’s story. Families gain expertise over years of caring for members with chronic con- ditions. Some stories are not favorable. They tell of misunderstandings, confusion, lack of knowledge, failure, or other difficulties managing conditions. The best way to learn about living with a condition is to ask families to share their story. These actions are important and certainly aligned with providing competent nursing care, but they are not all that peo- ple seeking care expect. Hearing family stories provides a way to learn about an experience from the perspective of those who have lived with it. This point of view seeks to capture the larger perspective of many relevant things. Nurses who think family make time to hear the unique family experiences and are available to hear stories.

Forming Relationships

Nurses who think family ask questions: “What was it like for you when you learned about this diagnosis?” “How has your family managed to maintain normalcy?” Family nurses can listen to the telling of unique family stories that give clues about disease management and family needs. This takes time, but it helps build trust, encourages mutual understanding, and offers empathy. Building trust may not involve words. Consider Theresa’s description:

THERESA: “What began as a watch-dog time period to ensure my son got a couple hours of uninterrupted sleep in the hospital turned into a life-altering situation. We were often in the hospital more than at home, and sleep became a treasured commodity. Michael’s best sleep was from 5 a.m. to 7 a.m. However, he was often awakened for things that could easily be done later. So I started to place my chair outside the door of his hospital room during that time and monitored who and why they wanted to enter. I realized this was the only quiet time I got in a 24-hour period. So I used the time to read, pray, collect my thoughts, and prepare for the day ahead. Hospital nurses and staff would walk by; some said good morning and others just glanced at me. I’m sure many wondered what that woman in the hallway was doing. One morning a nurse who walked by me every morning brought her office chair and placed it next to mine in the hallway. She demonstrated that she saw me and my needs. She viewed a person, a woman burdened and in need of some- thing more than the typical morning chit-chat. In the relationship we developed, she became a trusted friend and offered a few minutes of normal. Inside every disease are real people who need the medical community to assist them to remain in the world outside the hospital and clinic walls.”

Asking the family to tell their story helps the nurse align care processes with family’s perceived needs. Although nurses may define health as the absence of disease, a family of persons with chronic conditions may define health based on expectations. For example, Michael’s confirmed diagnosis meant he would lose functions over time and a new family life trajectory needed to develop. Anticipatory guidance for a healthy 10-year-old includes increased independence over time. Anticipatory guidance for Michael’s family likely varied from the norm as he grew older and experienced decreasing levels of independence.

THERESA: “Although we wanted to believe Michael’s outcome would be different from the prognosis given, we had to quietly prepare for life without him. There is little way to prepare for such a tremendous loss. It means what some nurses would define as denial be- comes a critical part of our coping. Some days we had to pretend our life was normal. Only in a relationship with us would you know we still talked with him about college, his hope to drive a big caterpillar on road construction, and his desire to marry. Our definition of Michael’s health, physical and emotional, had a life-limiting scope, but we viewed each

CHAPTER 11 ● Family-Focused Care and Chronic Illness 313

2910_Ch11_293-324 05/01/15 11:38 AM Page 313

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

day through a lens of hope and possibility. Our realignment was painful, exhausting, and often confusing. It was important to discuss our spiritual beliefs with medical providers during ongoing and escalating needs.”

Changing Perceptions

Time plays important roles in ways quality of life is understood. Research highlights the notion of response shift to chronic conditions as a reconceptualization in the meaning of an illness experience (Barclay-Goddard et al., 2012). This means that perception of well- being or life quality is different from others. For example, a man with a spinal cord injury may initially consider life quality low because he can’t walk or function as he did before the injury. Over time, this situation may be reframed. A “good life” might be viewed as abilities to participate in family or social activities, times when one is pain free, or finding new life meanings through compassion and spirituality (Barclay-Goddard et al., 2012).

THERESA: “This disease abruptly invaded Michael’s life. The rest of our life continued. The world events still continued around us. School activities continued. Our daughter’s softball practices, her games—those continued. To me, his mother, it seemed as though one day I was buying him cleats for T-ball team and a few days later he was to be fitted for a wheelchair.”

Being a healthy family before illness meant work, raising healthy children, and finding time for fun. After diagnosis, this family re-formed ideas of a healthy family to include Michael’s changing condition. They learned to live with vulnerabilities and uncertainty in new ways. They found new meanings, celebrated successes, and rethought normal. Through many adaptations the family demonstrated they were a resilient family enduring the unmanageable and impossible.

Preparing For and Acknow ledging Changes O ver Time

Michael’s renal status worsened and he needed a kidney transplant. Family members were evaluated as a suitable match for a kidney donor. Theresa was ruled out due to high blood pressure. His father discovered he had a mitral valve problem requiring heart surgery. His aunt was identified as a match and the planning for transplant began. Dates for the trans- plant were canceled due to Michael’s medical status, infections, and cardiac instability.

THERESA: “Finally, a date was set for the transplant. It was a hopeful time. We battled to get to this point and it finally came. We walked in that day not knowing what would happen—it was stress times a million. My sister was in one operating room and my son in another. It was an amazing and fearful time. There is nothing to prepare a family for some- thing like this. How do you thank someone for a gift like this? No Hallmark card that says ‘Thanks for the kidney’ exists. Michael and his aunt did well and were able to leave the hospital within a week.”

If you were a nurse working with this family, what kinds of things would you say? Would you take time to listen as they shared fears and thankfulness? Family nurses learn to be with others during uncomfortable times. Being vulnerable is not easy but it can build trust and relationships.

Michael returned to school. However, the immunosuppressive medications required caused him to have frequent and more severe strokes. Nurses are often unaware of the se- vere side effects of antirejection drugs and the unique challenges faced by individuals and families after transplant and these drugs are taken. His immune system was suppressed or compromised, and he was no longer able to attend school.

THERESA: “This was a turning point for us. In my heart, I began to wonder, ‘Is this the beginning of the end?’ You get to a tipping point logically, where you know this little

314 CHAPTER 11 ● Family-Focused Care and Chronic Illness

2910_Ch11_293-324 05/01/15 11:38 AM Page 314

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

boy and his body can’t sustain this. For the first time, I saw Michael giving up. He would say, ‘I want to stay on the couch.’ I would tell him how important it was to keep up his strength so that he could return to basketball. He said, ‘I don’t want to go back to basket- ball.’ We were teetering between reality, hope, and possibility.”

Michael’s immune status worsened and he was not able to be in public without risking infection. The family was confined to minimize risk of infection exposure. Families go through difficult times filled with new risks, vagueness, and wariness.

THERESA: “We were grateful to be home as a family. Family and friends left food at the door but couldn’t come inside. It was a sacred time for our family.”

Nurses seldom hear the stories about what happens when families go home. Medical staff members seldom learn what occurs after discharge following successful organ trans- plant. Families are alone as they experience fears, diminished hopes, and frightening times.

Calling on Family Strengths

Resilience is positive functioning and maintenance of competence despite risk or adversity (Supkoff, Puig, & Sroufe, 2012). Identifying family strengths can help a family satisfy needs associated with chronic illness. For example, cancer is a disease of both young and old—yet, little is known how best to support extended families and grandparents as these emotional experiences are faced (Box 11.9). Family stories identify problem solving that has worked in the past. Rather than identify shortcomings, family nurses can identify positive observations and offer praise for successfully accomplishing tasks. Commendations involve the nurse “noticing, drawing forth, and highlighting previously unobserved, forgotten, or unspoken

CHAPTER 11 ● Family-Focused Care and Chronic Illness 315

BOX 11-9

Ex periencing Cancer W ithin a Family

When a child experiences cancer, the family also experiences the illness. It is a family affair. Many children experience cancer and spend many days at inpatient settings. The many painful and invasive treatments are challenges. Family routines are disrupted, emotional distress occurs, member roles change, great uncertainty is faced, and financial hardship often happens. Families manage endless transitions as the child goes through various stages of treatment, illness trajectories, remissions, and relapse. Too often the effects of childhood cancer are not fully appreciative of the effects this illness also has on the family. A comprehensive program of family, psychological, and relational research was used in Alberta Children’s Hospital in Calgary, Canada, to offer a collaborative intervention. The pediatric hematology/oncology/blood and marrow transplant program and the Faculty of Nursing at the University of Calgary formed a partnership that used research findings to influence the nursing curriculum. Relational implies that all human experience occurs within the context of relationships that are systemic and interactional. A large amount of literature about cancer exists; however, little has examined the experiences of grandparents of the diagnosed child. Grandparents have strong emotional experiences while they offer support but receive none themselves. Little was known about how care or practice could be effectively changed. This research is ongoing. Conflicting evidence has shown an equal number of studies find parents and family suffering as a result from the illness, while others do not find this true and find families are strengthened. Comprehensive study of relational factors is being undertaken to determine what causes results and what influences long-term care that families receive. This research and its findings are portals for changes in practice. Reducing the human suffering experienced from an illness condition such as childhood cancer should be part of the treatment plan. Finding better ways to make this happen is an important part of exceptional care guided by evidence-based practice.

2910_Ch11_293-324 05/01/15 11:38 AM Page 315

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

family strengths, competencies, or resources” (Limacher & Wright, 2003, p. 132). Nurses who think family use commendations to encourage family, acknowledge strengths, and praise accomplishments.

Family nurses facilitate positive reframing of hurdles faced by families. They encourage family to talk about positive adaptations, meanings they are discovering in difficult situa- tions, and ways hope is perceived. These are unique experiences. By asking open-ended questions, listening, and reflecting on what families say, nurses can gain new insights. What strengths are described? What kinds of nursing actions can be used to help families adapt? Nurses can acknowledge and help families celebrate thriving in difficult situations.

Overcoming Barriers During Chronic Illness

A common barrier with chronic illness is a tendency to focus on individual symptoms and problems. Individual- and problem-focused care often addresses things not at the top of the family’s list of identified needs (Peyrot et al., 2005). A study of quality of life in children with quadriplegic cerebral palsy found that parents and providers had differ- ent views of what was most important to a child’s quality of life (Morrow, Quine, Lough- lin, & Craig, 2008). While professionals focused on weight gain, families focused on the child feeling loved. In the study, health professionals referred to burdens of the child’s condition on parents, whereas parents viewed the child’s condition as a part of life and a source of joy despite anxieties generated (Morrow et al., 2008). Ask questions about family priorities.

Empow erment

Over time, the amount of trust and decision making families and nurses share will change. Family empowerment is an interactive process that mobilizes resources to satisfy needs (Box 11.10). Empowerment involves nonjudgmental collaboration and willingness to shift responsibilities over time at the pace most appropriate from a family’s perspective (Hulme, 1999). Families often have a high level of dependence on health professionals. The Zimanske family was unfamiliar with the condition and overwhelmed with the diagnosis. They left the hospital in a state of disbelief and emotional shock. They needed information in small doses and follow-up from the providers. Family needs time to think things over, react, and grieve. The pace of information delivery is often based on care providers’ needs rather than family need. Unfortunately, busy medical practices and time-focused clinicians usually give all information at once. Little time is allotted for questions or responses. Families face critical news and are sent on their way still in shock. Care management changes, complications occur, and exacerbations bring new questions. Nurses often assume people know what to do. But many are poorly taught about conditions, and information is not parceled as needed, but given as a single giant dose.

The participatory phase of family empowerment is a challenging time as the balance of power is shifted to the family. The nurse questions the family about their needs as the con- dition progresses. Individuals with a chronic condition and their families become experts and know more about some things than clinicians. A successful shift in this balance of power requires nurses to listen, reflect, and collaborate.

In the collaboration phase, the family is encouraged to become assertive and less reliant on health professionals (Hulme, 1999). Family can independently negotiate roles and re- sponsibilities in family life. The family begins to normalize the chronic condition and adapt. Families might move through empowerment steps in a nonlinear fashion. Nurses who think

316 CHAPTER 11 ● Family-Focused Care and Chronic Illness

2910_Ch11_293-324 05/01/15 11:38 AM Page 316

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

family are tuned to family’s actions, reactions, words, and requests as medical expertise and family expertise are combined.

Care Coordination

A challenging barrier to family-focused care and chronic illness management is the frag- mentation of care delivery. Various care systems, numerous specialists, and little commu- nication among providers cause care management to be puzzling and exhausting for families. Families need assistance with care coordination. It might help to schedule visits to multiple specialists in the same facility on the same day rather than scheduling multiple returns. Family case managers can help navigate systems and manage care needs such as acquisition and management of equipment, medication adherence, appointment coordina- tion, and efficient use of resources. Families managing chronic conditions need empowering partnerships that put them at the helm of disease and life management.

Various definitions of care coordination make discussion of the topic a challenge (McDonald, Sundarum, Bravata, & Lewis, 2007). We discuss care coordination through a family nursing lens and use nursing processes. Thinking family reminds us that care coordination begins with assurance that family is an active participant. Coordinated care implies that roles pertinent to needs are effectively communicated and information about methods for performing self-care management tasks is provided. Nurses who think family develop family relationships that effectively coordinate care. Things like family identity, cultural preferences, self-care abilities, motivation, and personal beliefs affect care man- agement. Collaboration is needed to ensure that gaps or care duplication is avoided. Competing plans increase the risks of treatment errors and poor outcomes.

Care coordination recognizes that meeting with clinicians is disruptive and plays havoc with daily lives. Although medical visits are essential, they are not easily handled. Infor- mation from practitioners often differs. Sometimes it seems that the left hand does not know what the right is doing. Optimal coordination involves synchronizing treatments, medical visits, and medications to meet individual and family needs.

THERESA: “Care coordination worked well with Michael’s primary pediatric clinic. From the time of diagnosis they wanted to be the liaison between multispecialty care the syndrome demanded. We developed a specific protocol for appointments, which gave sta- bility to weekly and sometimes daily laboratory draws and security in emergency scenarios. That gave us more family time at home, less time on the road, and more normal routines and schedules. Care coordination didn’t go well between the specialty care departments and was a big challenge. Each specialty operated independent of the other and did not

CHAPTER 11 ● Family-Focused Care and Chronic Illness 317

BOX 11-10

Four Phases of Empow erment

Research with families dealing with chronic conditions suggests that many families progress through these four phases of empowerment:

● Professional dominated empowerment ● Participatory empowerment ● Challenging empowerment ● Collaborative empowerment

Source: Hulme, P. A. (1999). Family empowerment: A nursing intervention with suggested outcomes for families of children with a chronic health condition. J ournal of Family Nursing, 5 (1), 33–50.

2910_Ch11_293-324 05/01/15 11:38 AM Page 317

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

serve Michael as a patient or us as a family. It should flow as a team from one to another, each area of care taking responsibility and using their medical expertise and injecting that into the total collaborative process.”

Family-focused care coordination should minimize visits or schedule them in ways that best fit the family schedule. This might mean negotiating appointments so a child can attend soccer practice or enable a father or grandparent to attend clinic appointments. Nurses who think family know communication about care needs must be family communication. Setting reasonable and manageable goals for families is more than doctor visits, treatment, and medicine.

Family Difficulties in Changing Routines

Individuals and families are concerned with symptom control, clinical progress, and usual routines. Life schedules need to accommodate prescribed treatments so they improve qual- ity of life. Adults with heart disease may need to decrease work, assume a less stressful job, or exercise to improve cardiac health. Persons with diabetes may need their family to support them by altering family health routines, physical activity, and medical manage- ment. Not all family members may be supportive and not all families are well organized and positively functioning. Changes increase stress if they alter finances, reduce personal time, alter dietary choices, or limit social life. Families are not always willing to alter per- sonal lifestyles, especially when they don’t understand reasons. Lifetime changes can be viewed as burdens. The weight of caregiving can fall on single persons. Nurses can’t solve family problems, but they can give appropriate help and useful support. Thinking family means helping with integration of new family health routines, accessing needed resources, and setting goals for the most effective care outcomes.

Caring for the Caregivers of Those With a Chronic Illness

THERESA: “I had a routine mammogram that indicated changes. I received a call one af- ternoon from the gynecologist. Michael came into the kitchen, where I was talking on the phone. He could tell by my face that something was wrong, and he thought it was bad news about him. I put the phone down and said, ‘Michael, it’s okay—it’s not about you.’ Then the news hit me: I had breast cancer. I thought, ‘Now what am I going to do?’ I hung up the phone and told Michael about it first. He said, ‘Now I can take care of you, Mom.’”

Theresa had a double mastectomy and a series of surgeries to repair a skin flap. She was unable to physically care for Michael for several months because of the recovery process and pain from these surgeries.

THERESA: “It was a time that our family really needed a strong partnership with care providers. We lived in deep fear. It was especially hard for Jessica. She was 16 and dealing with her brother’s progressive condition, her mother’s breast cancer, and her father’s heart condition. There was much emotion in our home—it became unrecognizable as our home because we are not like that as a family. I dug my heels in deeper. ‘This will not be us!’ As a family, we committed to getting through this. We needed a commitment from our care providers that they would be with us through the process.”

Caregiver fatigue is a barrier to care with chronic illness. Caregivers experience caregiving difficulties and emotional pain. This has been called compassion fatigue in the literature and occurs when an empathic relationship results in a psychological response to progressive and deep-seated stress to prolonged care needs and exhaustion in the caregiver (Lynch & Lobo, 2012). Self-care is important for caregivers. Family nurses can help caregivers anticipate the

318 CHAPTER 11 ● Family-Focused Care and Chronic Illness

2910_Ch11_293-324 05/01/15 11:38 AM Page 318

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

long haul of chronic illness and help them prepare mentally and practically for future needs (Rolland & Walsh, 2006). Chronic illness is often in the foreground of family life.

THERESA: “In January 2005, Michael developed a fever. He knew when his tempera- ture got to a certain point, we had to go to the hospital. He said, ‘I’ll do whatever it takes to stay home tonight.’ I think he knew that this would be his last night at home—I saw a resolve in him, and there was no fear. I recall him sitting in front of the television watching cartoons with a cool towel on his head, eating popsicles to keep his temperature down until morning. We knew he would be admitted in the morning and it was serious. That night I went into his bedroom and sat on his bed. I had drain tubes in from my surgery. I just stared at him. He woke up and said, ‘What are you doing?’ ‘Just checking,’ I said. That was the last night he was home—he never came home again. He was admitted to the hospital for treatment of a severe infection.”

Theresa stayed at his bedside. Don went to work. Jessica continued school. After a month passed, it was determined Michael needed a bone marrow transplant and chemotherapy. He went into the operating room for a procedure.

THERESA: “Don and I were in the waiting room when a nurse came out of the oper- ating room to tell us that Michael had a massive heart attack on the table just as the pro- cedure started. They had resuscitated him, but they feared that in the process he had a stroke and they were not sure he would survive. They told us to call anyone who wants to see him and tell them to be here within the hour. We called Jessica and other family mem- bers. My family took turns staying with us, holding vigil. Michael survived the day but never woke up. We ultimately decided to stop treatment and he was peaceful.”

Michael died at the age of 13 years. Since his death, Theresa has spent time in a program she calls Be the Change. Through this program she shares her story with nurses, medical students, physicians, and anyone who will listen. She is a strong advocate for what families need when a member has a chronic illness. Learn more about her, Michael, and their family story at her Web site <http://bethechangemn.com/>.

Chapter Summary

Theresa notes, “I believe that when health care providers see and hear the real human be- ings that are involved in the medical story, a stronger connection is made.” Family-focused care in chronic conditions requires nurses to see and hear the people experiencing the con- dition. The family is always intricately connected to chronic conditions that last for years. Nurses who think family understand the connected relationships between family units, their household, and communities as chronic conditions are managed. Family nurses give intentional attention to supporting the family to plan goals and develop strategies linked with conditions. Prior lifestyles are interrupted and new ways need to be structured to meet disease and family needs. Family nurses use coordinated care to meet needs linked with the changes over time as living with the condition evolves. Nurses listen to the family’s story, respect their expertise, and form partnerships with them. Thinking family assists families household members to best manage long-standing situations over time.

Chapter Recognitions

Early work on Chapter 11 was initiated by Wendy Looman, PhD, RN, CNP, an Asso- ciate Professor at the School of Nursing at the University of Minnesota in Minneapolis. Dr. Looman has great expertise and extensive scholarship in areas of special health care

CHAPTER 11 ● Family-Focused Care and Chronic Illness 319

2910_Ch11_293-324 05/01/15 11:38 AM Page 319

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

needs of children. Mary Erickson, DNP, RN, CNP, a long-time employee at Children’s Hospitals and Clinics of Minnesota, also made important contributions. A special expres- sion of gratitude is owed to Theresa Zimanske for generously sharing her family story about Michael and allowing us to share how his chronic condition warranted family- focused care.

REFERENCES

American Nurses Association (2010). Nursing’s social policy statement: The essence of the profession. Silver Spring, MD: Nursesbooks.org.

Angell, R. C. (1936). The family encounters the depression. New York: Charles Scribner. Antonovsky, A. (1979). Health, stress, and coping. San Francisco: Jossey-Bass. Ary, D. V., Toobert, D., Wilson, W., & Glasgow, R. E. (1986). Patient perspectives contributing to

nonadherence to diabetes regimen. Diabetes Care, 9(2), 168–172. Baile, W. F., Tacchi, P., & Aaron, J. (2012). What professionals in healthcare can do: Family caregivers

as members of the treatment team. In R. C. Talley, R. McCorkle, & W. F. Baile (Eds.), Cancer caregiving in the United States. Research, practice, policy (Pt. 1, pp. 103–124). New York: Springer. doi 10.1007/978-1-4614-3154-1_6

Baldwin, M. L., Schultz, I. Z., Rogers, S., & Rogers, E. S. (2011). Stigma, discrimination, and em- ployment outcomes among persons with mental health disabilities. doi:10.1007/978-1-4419-0428- 7_3. Retrieved from http://www.springerlink.com/content/uj14117168838407/fulltext.pdf

Baradaran-Heravi, A., Morimoto, M., Lucke, T., & Boerkoel, C. F. (2011). Schimke immunoosseous dysplasia. Gene Reviews. Retrieved July 24, 2012 from http://www.ncbi.nlm.nih.gov/books/ NBK1376/

Barclay-Goddard, R., King, J., Dubouloz, C., & Schwartz, C. E. (2012). Building on transformative learning and response shift theory to investigate health-related quality of life changes over time in individuals with chronic health conditions and disability. Archives of Physical Medicine and Rehabilitation, 93(2), 214–220. doi:10.1016/j.apmr. 2011.09.010

Beeber, A. S., & Zimmerman, S. (2012). Adapting the family management style framework for families caring for older adults with dementia. Journal of Family Nursing, 18(1), 123–145. doi: 10.1177/1074840711427144

Bethell, C., Kogan, M. D., Strickland, B. B., Schor, E. L., Robertson, J., Newacheck, P. W. (2011). A national and state profile of leading health problems and health care quality for US children: Key insurance disparities and across-state variations. Academic Pediatrics, 11, S22–S33.

Boerkoel, C. F., Takashima, H., Stankiewicz, P., Garcia, C. A., Leber, S. M., Rhee-Morris, L., & Lupski, J. R. (2001). Periaxin mutations cause recessive Dejerine-Sottas neuropathy. American Journal of Human Genetics, 68(2), 325–333.

Boss, P. (1988). Family stress management. Thousand Oaks, CA: Sage. Boss, P. (2000). Ambiguous loss: Learning to live with unresolved grief. Cambridge, MA: Harvard

University Press. Bronfenbrenner, U. (2005). The bioecological theory of human development. In U. Bronfenbrenner

(Ed.), Making human beings human: Bioecological perspectives on human development (pp. 3–15). Thousand Oaks: Sage.

Capen, C. L., & Dedlow, R. (1998) Discharging ventilator-dependent children: A continuing chal- lenge. Journal of Pediatric Nursing, 13(3), 175–184.

Cavan, R. S., & Ranck, K. H. (1938). The family and the Depression. Chicago: University of Chicago Press.

Chen, H-Y., Baumgardner, D. J., & Rice, J. P. (2011). Health-related quality of life among adults with multiple chronic conditions in the United States, Behavioral Risk Factor Surveillance System. Preventing Chronic Disease, 8(1), A09. Retrieved from http://www.cdc.gov/pcd/issues/2011/ jan/09_0234.htm

Child and Adolescent Health Measurement Initiative (2012). Exploring health conditions in the 2009/10 NS-CSHCN. Data Resource Center, supported by Cooperative Agreement

320 CHAPTER 11 ● Family-Focused Care and Chronic Illness

2910_Ch11_293-324 05/01/15 11:38 AM Page 320

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

1_U59_MC06980_01 from the U.S. Department of Health and Human Services, Health Re- sources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB).

Clifford, G. D., & Clifton, D. (2012). Wireless technology in disease management and medicine. Annual Review of Medicine, 63, 479–492. doi:10.1146/annurev-med-051210-114650

Cohen, E., Kuo, D. Z., Agrawal, R., Berry, J. G., Bhagat, S. K., Simon, T. D., & Srivastava, R. (2011). Children with medical complexity: An emerging population for clinical and research initiatives. Pediatrics, 127(3), 529–538.

Cramer, J. A. (2004). A systematic review of adherence with medications for diabetes. Diabetes Care, 27(5), 1218–1224.

Cystic Fibrosis Foundation Patient Registry: Annual data report 2010. Retrieved on June 25, 2012 from http://www.cff.org/

Denham, S. A. (2003). Family health: A framework for nursing. Philadelphia: F. A. Davis. Denham, S. A., Manoogian, M., & Schuster, L. (2007). Managing family support and dietary rou-

tines: Type 2 diabetes in rural Appalachian families. Families, Systems, & Health, 25(1), 36–52. Eddy, L. L., & Walker, A. J. (1999). The impact of children with chronic health problems on mar-

riage. Journal of Family Nursing, 5(1), 10–32. Fogt, E. J., Dodd, L. M., Jenning, E. M., & Clemens, A. H. (1978). Development and evaluation of

a glucose analyzer for a glucose-controlled insulin infusion system (Biostator). Clinical Chemistry, 24(8), 1366–1372.

Friedman, D., Holmbeck, G. N., DeLucia, C., Jandasek, B., & Zebracki, K. (2009). Trajectories of autonomy development across the adolescent transition in children with spina bifida. Rehabilita- tion Psychology, 54(1), 16–27.

Gavazzi, S. M. (2011). Family development theory. In S. M. Gavazzi (Ed.), Families with adolescents. New York: Springer. doi:10.1007/978-1-4419-8246-9_3

Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs, NJ: Prentice Hall.

Halfon, N., & Newacheck, P. W. (2010). Evolving notions of childhood chronic conditions. Journal of the American Medical Association, 303(7), 665–666. doi:10.1001/jama. 2010.130

Hayes, C., Naylor, R., & Egger, G. (2012). Understanding chronic pain in a lifestyle context: The emergence of a whole-person approach. American Journal of Lifestyle Medicine, 6(2), 421–428. doi:10.1177/1559827612439282

Herzer, M., Godiwala, N., Hommel, K. A., Driscoll, K., Mitchell, M., Crosby, L. E., . . . Modi, A. C. (2010). Family functioning in the context of pediatric chronic conditions. Journal of Developmental and Behavioral Pediatrics, 31(1), 26–34.

Hill, R. (1949). Families under stress. New York: Harper & Row. Hulme, P. A. (1999). Family empowerment: A nursing intervention with suggested outcomes for

families of children with a chronic health condition. Journal of Family Nursing, 5(1), 33–50. Institute of Medicine. (2012). Living well with chronic illness: A call for public health action.

Washington, DC: National Academy of Sciences. Jardine, E. (1998). Core guidelines for the discharge of the child on long term assisted ventilation in

the United Kingdom. Thorax, 53, 762–767. Knafl, K. A., & Deatrick, J. A. (2003). Further refinement of the Family Management Style Frame-

work. Journal of Family Nursing, 9(3), 232–256. Knafl, K. A., Deatrick, J. A., & Havill, N. L. (2012). Continued development of the family manage-

ment style framework. Journal of Family Nursing, 18(1), 11–34. doi:10.1177/1074840711427294 Kuhlthau, K. A., Bloom, S., Van Cleave, J., Knapp, A. A., Romm, D., Klata, K., . . . Perrin, J. M.

(2011). Evidence for family-centered care for children with special health care needs: A systematic review. Academic Pediatrics, 11(2), 136–143.

Kung, H. C., Hoyart, D. L., Xu, J., & Murphy, S. L. (2008). Deaths: Final data for 2005. National Vital Statistics Report, 56(10). Retrieved July 23, 2012 from http://www.cdc.gov/nchs/ data/nvsr/nvsr56/nvsr56_10.pdf

Larkin, P., Jahoda, A., McMahon, K., & Pert, C. (2012). Interpersonal sources of conflict in young people with mild to moderate intellectual disabilities at transition from adolescence to adulthood. Journal of Applied Research in Intellectual Disabilities, 25, 29–38.

CHAPTER 11 ● Family-Focused Care and Chronic Illness 321

2910_Ch11_293-324 05/01/15 11:38 AM Page 321

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Lazarus, R. S. (1993). Coping theory and research: Past, present, and future. Psychosomatic Medi- cine, 55, 234–247.

Limacher, L. H., & Wright, L. M. (2003). Commendations: Listening to the silent side of a family intervention. Journal of Family Nursing, 9, 130–150.

Lucke, T., Tsikas, D., Kanzelmeyer, N. K., Boerkoel, C. F., Clewing, J. M., Vaske, B., Ehrich, J.H., & Das, A. M. (2006). Vaso-occlusion in Schimke-immuno-osseous dysplasia: Is the NO pathway involved? Hormone and Metabolic Research, 38(10), 678–682.

Lynch, S. H., & Lobo, M. L. (2012). Compassion fatigue in family caregivers: A Wilsonian concept analysis. Journal of Advanced Nursing, 68(9), 2125–2134 (online issue). doi:10.1111/j.1365- 2648.2012.05985.x

Manoogian, M. M., Harter, L. M., & Denham, S. A. (2010). The storied nature of health legacies in the familial experience of type 2 diabetes. Journal of Family Communication, 10, 1–17.

Maeng, D. D., Martsolf, G. R., Scanlon, D. P., & Christianson, J. B. (2012). Care coordination for the chronically ill: Understanding the patient’s perspective. Health Services Research, 47(5), 1960– 1979. doi:10.1111/j.1475-6773.2012.01405.x

Margolan, H., Fraser, J., & Lenton, S. (2004) parental experience of services when their child requires long-term ventilation: Implications for commissioning and providing services. Child: Care, Health & Development, 30(3), 257–264.

McCubbin, M. A., & McCubbin, H. I. (1989). Families coping with illness: The resiliency model of family stress, adjustment and adaptation. In C. B. Danielson, B. Hamel-Bissel, & P. Winstead-Fry (Eds.), Families, health & illness: Perspectives on coping and intervention. St. Louis: Mosby.

McDonald, K. M., Sundarum, V., Bravata, D. M., & Lewis, R. (2007). Closing the quality gap: A critical analysis of quality improvement strategies. Care Coordination (Vol 7). Report No. 04(07(0051-7). Rockville, MD: Agency for Healthcare Research and Quality

Morrow, A. M., Quine, S., Loughlin, E. V. O., & Craig, J. C. (2008). Different priorities: A compar- ison of parents’ and health professionals’ perceptions of quality of life in quadriplegic cerebral palsy. Archives of Diseases in Childhood, 93, 119–125. doi:10.1136/adc.2006.115055

Mortimer, J. T. (2012). The evolution, contributions, and prospects of the Youth Development Study: An investigation in life course social psychology. Social Psychology Quarterly, 75(1), 5–27.

Moules, N. J., Laing, C., Morck, A., & Toner, N. (2011). Stepping into the middle: Family research in pediatric oncology. In E. K. Svavarsdottir & H. Jonsdottir (Eds.), Family nursing in action (pp. 271–284). Reykjavik, Iceland: University of Iceland.

Noyes, J. (2007). Comparison of ventilator-dependent child reports of health-related quality of life with parent reports and normative populations. Journal of Advanced Practice Nursing, 58(1), 1–10.

National Institutes of Health. (2014). Schimke immune-osseous dysplasia. Retrieved September 4, 2014 from ghr.nlm.nih.gov/condition/schimke-immuno-osseous-Dysplasia

Patterson, J. (1988). Families experiencing stress: The family adjustment and adaptation response model. Family Systems Medicine, 5(2), 202–237.

Peyrot, M., Rubin, R. R., Lauritzen, T., Snoek, F. J., Matthews, D. R., & Skovlund, S. E. (2005). Psychosocial problems and barriers to improved diabetes management: Results of the crossna- tional Diabetes Attitudes, Wishes, and Needs (DAWN) Study. Diabetic Medicine, 22, 1379–1385.

Ray, L. D. (2003). The social and political conditions that shape special-needs parenting. Journal of Family Nursing, 9(3), 281–304.

Rempel, G. R., Blythe, C., Rogers, L. G., & Ravindran, V. (2012). The process of family management when a baby is diagnosed with a lethal congenital condition. Journal of Family Nursing, 18(1), 35–64. doi:10.1177/1074840711427143

Risdal, D., & Singer, G. H. (2004). Marital adjustment in parents of children with disabilities: A his- torical review and meta-analysis. Research & Practice for Persons with Severe Disabilities, 29(2), 95–103.

Rolland, J. S., & Walsh, F. (2006). Facilitating family resilience with childhood illness and disability. Current Opinion in Pediatrics, 18, 527–538.

Seligman, M., & Darling, R. B. (2007). Effects on the family. In M. Seligman & R. B. Darling (Eds.), Ordinary families, special children (3rd ed., pp. 181–217). New York: Guilford.

Selye, H. (1976). The stress of life (rev. ed.). New York: McGraw-Hill.

322 CHAPTER 11 ● Family-Focused Care and Chronic Illness

2910_Ch11_293-324 05/01/15 11:38 AM Page 322

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Simon, J. B., Murphy, J. J., & Smith, S. M. (2005). Understanding and fostering family resilience. The Family Journal, 13(4), 427–436. doi:10.1177/1066480705278724

Smith, S. M., Soubhi, H., Fortin, M., & O’Dowd, T. (2012). Interventions for improving outcomes in patients with multimorbidity in primary care and community settings (review). Cochrane Data- base of Systematic Reviews, 4, CD006560. doi:10.1002/14651858.CD006560.pub2

Sperry, L. (2011). Spiritually competent practice with individuals and families dealing with medical conditions. The Family Journal, 19(4), 412–416. doi:10.1177/1066480711417236

Supkoff, L. M., Puig, J., & Sroufe, L. A. (2012). Situating resilience in developmental context. In M. Ungar (Ed.), The social ecology of resilience: A handbook of theory and practice (pp. 127–142). New York: Springer. doi:10.1007/978-1-4614-0586-3_12

Tennant, P. W., Pearce, M. S., Bythell, M., & Rankin, J. (2010). 20-year survival of children born with congenital anomalies: A population-based study. Lancet, 375, 649–656. doi:10.1016/S0140- 6736(09)61922-X

Venter, A., Burns, R., Hefford, M., & Ehrenberg, N. (2012). Results of a telehealth-enabled chronic care management service to support people with long-term conditions at home. Journal of Telemedicine and Telecare, 18, 172–175.

Walsh, F. (2012). Facilitating family resilience: Relational forces for positive youth development in con- ditions of adversity. Social Ecology of Resilience, 4, 173–185. doi:10.1007/978-1-4614-0586-3_15

West, C., Usher, K., & Foster, K. (2011). Family resilience: Towards a new model of chronic pain management. Collegian, 18(1), 3–10.

Wiegand, D. L. (2012). Family management after the sudden death of a family member. Journal of Family Nursing, 18(1), 146–163. doi:10.1177/1074840711428451

World Health Organization (2002). Innovative care for chronic conditions: Building blocks for action: Global report. Geneva: WHO.

CHAPTER 11 ● Family-Focused Care and Chronic Illness 323

2910_Ch11_293-324 05/01/15 11:38 AM Page 323

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

2910_Ch11_293-324 05/01/15 11:38 AM Page 324

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .