Chronic Illness and Rehabilitation



Chronic Illness and Rehabilitation


Pamala D. Larsen, PhD, CRRN, FNGNA



Learning Objectives


On completion of this chapter, the reader will be able to:


1. Define chronic illness and its relationship with rehabilitation.


2. Identify potential goals for an older adult with chronic illness.


3. Plan interventions that support an older adult’s adaptation to a chronic illness or disability.


4. Describe the nurse’s role in assisting older adults in managing chronic conditions.


5. Identify opportunities for change in the health care system to improve care for older adults with chronic illness and disability.




Chronicity


Chronic disease affects the physical, psychologic, and social aspects of the lives of individuals and families. A person’s lifestyle, interactions, and relationships with others may change. Many older adults with chronic illness become homebound, and this decreased outside contact leads to social isolation. Individuals with chronic illness may perceive themselves as a burden, and families often experience caregiver stress. The individual is often stigmatized or acquires a label such as “that cancer patient” or “that person with chronic pain.” The disease becomes the patient’s identity.


It is important to differentiate between the terms chronic disease and chronic illness. Often these terms are used interchangeably by both health care providers and the general public. Disease refers to a condition viewed from a pathophysiologic model, such as an alteration in structure and function; it is a physical dysfunction of the body. Illness is what the individual (and family) are experiencing, that is, how the disease is perceived, lived with, and responded to by individuals and families (Larsen, 2009a). As health care providers, we can often modify the disease process or assist the client in obtaining optimal health; however, often times it is the illness experience that we can most affect.


Just as the terms chronic disease and illness are complex, defining them is as well. An early national group, the Commission on Chronic Illness (1957) defined chronic illness as


All impairments or deviations from normal that have one or more of the following characteristics: (a) are permanent, (b) leave residual disability, (c) are caused by nonreversible pathological alteration, (d) require special training of the client for rehabilitation, and (e) may be expected to require a long period of supervision, observation, or care.


The Centers for Disease Control and Prevention (CDC) (2009a) define chronic disease as


noncommunicable illnesses that are prolonged in duration, do not resolve spontaneously, and are rarely cured completely.


Both the early definition from the Commission on Chronic Illness and the CDC definition emphasize the physicality of chronic disease, in other words, the pathology. Neither definition addresses the total experience of the individual and family. The following definition better defines the illness experience and how the nurse can intervene:


Chronic illness is the irreversible presence, accumulation, or latency of disease states or impairments that involve the total human environment for supportive care and self-care, maintenance of function, and prevention of further disability (Curtin & Lubkin, 1995).


More than 133 million adults in the United States have one or more chronic conditions, which is 1 of every 2 adults (CDC, 2009a). Chronic conditions continue to be the primary causes of death in individuals 65 or older. Note the number of chronic conditions in Table 17–1. As one might expect, the medical costs of individuals with chronic conditions accounts for more than 75% of our nation’s medical care costs each year (CDC, 2008).



The continuing increase in the prevalence of chronic conditions is due to many factors. Primary among them are lifesaving and life-extending technologies not previously available, an expanding population of older adults, and as a result, increasing life expectancy. Individuals in the past who would have succumbed to an acute illness now recover, age, and live with a chronic condition. The young adult with a spinal cord injury, who years ago would not have survived, may now have a normal life span because of lifesaving technology and preventive health care. Think about the very low birth weight infants of today who would not have survived in earlier years: they are now flourishing and growing into adulthood or they survive with chronic health problems. The individual diagnosed with cancer, heart disease, or other condition can now expect to live into “old age,” as formerly acute conditions become chronic in nature.


Even though the prevalence of chronic conditions has increased, most health care services remain oriented to acute illness. The current U.S. health care system was largely developed in the two decades after World War II. It was designed to provide acute, episodic, and curative care and was never intended to address the needs of those with chronic conditions. Overall, the health care system does a reputable job of caring for those with acute illness or injury. However, it is a health care system that does not know how to care for the older adult with chronic obstructive pulmonary disease (COPD), or Parkinson’s disease, or long-standing heart disease or cancer. The healthcare system applies the “acute care model” to those individuals with chronic conditions, and as a result, there is a mismatch between what the older adult needs and what the system can provide. This conflict results in fragmented care, inadequate or inappropriate care from the system, and dissatisfaction on the part of the client.



Prevalence of Chronic Illness


Although chronic disease and disability can occur at any age, the bulk of these conditions occurs in adults 65 years or older. Julie Gerberding, former director of the CDC, stated that “the aging of the U.S. population is one of the major public health challenges we face in the 21st century” (CDC & Merck Company, 2007). By 2030 there will be nearly 70 million older Americans, representing 20% of the total population as compared with 13.2% predicted for 2010 (Administration on Aging, 2009). As we age, the chances of having a chronic condition increase. The State of Aging and Health in America (CDC & Merck Company, 2007) reports that 80% of older Americans have at least one chronic health condition. Similarly, Medicare data document that 83% of all its beneficiaries have at least one chronic condition (Anderson, 2005). Comorbidities are particularly common: approximately 50% of older adults having at least two or more chronic conditions (CDC & Merck Company, 2007). With this increasing number of individuals with a chronic condition, the health care system has to do a better job of caring for them. Nursing care, in particular, needs to focus on increasing functional ability, preventing complications, promoting the highest quality of life, and, when the end stage of life occurs, providing comfort and dignity in dying. A key role for the nurse caring for an older adult with a chronic condition is to help the client achieve optimal physical and psychosocial health.


The most frequently occurring conditions in older adults in 2004 to 2005 (most current data available) include hypertension, diagnosed arthritis, heart disease, cancer, diabetes, and sinusitis (Administration on Aging, 2008). Regarding hypertension, National Hospital Discharge Survey data state that 65% of men and 80% of women 75 years or older either had high blood pressure or were taking antihypertensive medications in 2003-2006 (National Center for Health Statistics, 2008).


Individuals with chronic conditions typically have repeated hospitalizations to treat exacerbations of their illness. For both men and women ages 65 to 74, the most common reasons for hospitalization are heart disease, cancer, pneumonia, and stroke (Table 17–2). As men and women reach 75 or older, these diseases continue to predominate (Table 17–3). Hospitalizations resulting from injuries, particularly in women (e.g., hip fractures), increase significantly, as does heart disease in this age category. Given these statistics, one can see that elderly women have significantly more hospitalizations than do men of the same age.





The Illness Experience


The diagnosis of a chronic disease and subsequent management of that disease bring unique experiences and meanings of the process to both the client and family (Larsen, 2009b). Just as each individual and his or her disease process is unique, so too are the meanings and experiences of that disease to the individual and his or her family. However, the educational background of most health care professionals is one that fits with the medical model and does not consider the different illness perceptions and illness behaviors of individuals. We have been taught that patients have diseases and the degree of their pathology dictates their treatment. Health care has even developed algorithms that tell us how and what care to provide. Nonetheless, having a chronic illness is not a black and white, quantifiable concept. There are many shades of gray. Kleinmann, a longtime author on illness behavior and its meaning, becomes concerned that researchers have “reduced sickness to something divorced from meaning in order to avoid the heard and still unanswered technical questions concerning how to actually go about measuring meaning and objectivizing and quantifying its effect on health status and illness behavior” (Kleinmann, 1985).



Health Within Illness


Health care providers typically view an older person who is ill within a disease framework. This framework is an acute care framework that “fixes and cures.” However, we know that chronic conditions are not cured and may not be able to be “fixed.”


In caring for older adults with chronic illness, health care professionals need a paradigm shift. After learning and mastering the requirements imposed by the condition, older adults often view themselves as “well.” The disease is only one component of their life and is not their identity. The physical traits of chronic illness should not determine an older adult’s state of wellness. Many older adults are now more involved in their health care than ever before and accept responsibility for their wellness. They seek education about health promotion and management of their illness. The nurse can support older adults by working with them to identify areas that may hinder progress along the wellness continuum and by teaching self-care management in these areas.



Cultural Competency


Concepts of health and illness are deeply rooted in culture, race, and ethnicity and influence an individual’s (and family’s) illness perceptions and health and illness behavior (Larsen & Hardin, 2009). Ethnic minorities do not necessarily subscribe to the values or tenets associated with this country’s medical system. Additionally, each culture is not homogeneous, and there are variations and subcultures within each.


According to the 2000 U.S. Census, approximately 30% of the population is racially and ethnically diverse. Projections are that by 2100 this percentage will increase to 40%, and non-Hispanic whites will make up only 60% of the U.S. population (CDC, 2009b). With these increasing numbers of ethnically and culturally diverse older adults, health care providers need to be better attuned to their needs.


There are a number of nursing frameworks that can assist health care providers in providing culturally competent care. The website of the Transcultural Nursing Society (www.tcns.org) provides information about six different theories and models. Models include those by Margaret Andrews and Joyceen Boyle, Josepha Campinha-Bacote, Joyce Giger and Ruth Davidhizar, Madeline Leininger, Larry Purnell, and Rachel Spector.



Quality of Life and Health-Related Quality of Life


Advancements in health care have increased interest in the quality of life (QOL) of persons with chronic illnesses. There are multiple definitions of quality of life, but most include physical, psychologic, and social components; disease and treatment-related symptoms; and spirituality. There is no consensus, however, on the definition. The following definition, although somewhat older, fits well with older adults. QOL is an individual’s perceptions of well-being that stem from satisfaction or dissatisfaction with dimensions of life that are important to the individual (Ferrans & Powers, 1985). This definition is particularly applicable to chronic illness. The complexity of health and function in chronic illness, particularly if one believes that health can be present within illness, suggests that neither “good” health nor functional abilities are necessary for quality of life. QOL is determined by the individual, not the health care provider.


To further confuse the issue, most researchers draw a distinction between QOL and health-related quality of life (HRQOL). Most suggest that HRQOL is a subset of QOL. Brown, Renwick, and Nagler (1996) believe that HRQOL should be used in a narrow sense within the medical–nursing environment by those who are interested in the outcomes and quality of changes resulting from medical and nursing interventions. Patrick and Erickson (1993) conceptualize HRQOL in terms of opportunity, health perceptions, functional status, impairment, and death and duration of life.


How QOL and HRQOL intersect is salient to the client with chronic illness and those providing care. For example, a person who has adjusted to a wheelchair for mobility might perceive his HRQOL and his QOL as excellent, whereas the health care provider may not rate the person’s HRQOL high because a wheelchair may not be his optimum state of function and wellness. The subjective and objective components of both of these concepts are important.



Adherence in Chronic Illness


In the past, compliance has been the term used for all patient behaviors consistent with health care recommendations (Holroyd & Creer, 1986). However, the term adherence has now replaced compliance because adherence is the term used on the global stage of health care delivery (Berg, Evangelista, Carruthers, & Dunbar-Jacob, 2009). There are a number of factors that influence nonadherence. Factors include (1) individual characteristics, (2) psychologic factors, (3) social support, (4) prior health behaviors, (5) somatic factors, (6) regimen characteristics, (7) economic and sociocultural factors, and (8) client–provider interactions (Berg et al, 2009).


Although adherence, formerly compliance, has been researched for a number of years, the results of that research have not effected significant changes in patient behavior. Health care providers are perhaps better able to identify the factors that influence patient behaviors toward adherence or nonadherence, but the interventions that produce positive behaviors remain elusive.


The World Health Organization (WHO) suggests adopting the use of the five As in an effort to assist patients with the self-management aspects of their chronic disease, of which treatment adherence is just one part (2003). The 5 As include assess, advise, agree, assist, and arrange. Although these key aspects seem straightforward and easy to follow for health care providers, data suggest that there is only 50% adherence to treatment regimens for individuals with chronic illness (Dunbar-Jacob et al, 2000; WHO, 2003). There are mixed data in studies that examine age and adherence behaviors. Park and Skurnik (2004) suggest that there are a variety of factors that may interfere with the ability of the older adult to adhere to a treatment plan. However, in general, developmental issues, such as age, have not been well addressed in the adherence literature (Dunbar-Jacob et al, 2000).


Berg et al (2009) suggest that although the 5 As is a good framework for health care providers to use, it is also important to (1) advise the patient of the importance of the treatment plan, (2) establish agreement with the treatment plan, and (3) arrange adequate follow-up.


Overall strategies to enhance adherence include educational, behavioral, and organizational approaches. The nurse must first assess the older adult’s belief in the mutually established goals. Is there self-motivation by the older adult to work toward these



EVIDENCE-BASED PRACTICE


The Importance of Exercise and Quality of Life for Older Adults






From Lee L, Lee D, Woo J: Tai Chi and health related quality of life in nursing home residents, J Nurs Scholarsh 41(1):35–43, 2009.


goals, or were these goals not mutually established but generated by the health care provider? The assessment should include identification of strengths such as self-motivation.


The cost of today’s health care requires that nurses be aware of specific needs of older adults when structuring their therapeutic regimens. Regimens should emphasize activities that build endurance and self-reliance and that facilitate self-care and quality of life. Older adults must believe that a therapeutic regimen aids in the recovery or maintenance of their functional level.



Psychosocial Needs of Older Adults with Chronic Illness


Understanding the relationship between the older adult’s social, psychologic, and physiologic needs is important for health care providers. Each older adult and their family are unique, and the presence of one or more chronic illnesses further illuminates their uniqueness. The end result of understanding the client’s unique situation assists the health care provider in establishing interventions that support psychosocial adaptation.



Adaptation


Adaptation infers that there is an event or something unusual or different that is perceived as a threat or stressor to the individual that merits a reaction, a change, or a behavior by an individual (Stanton & Revenson, 2007). Other authors have seen adaptation as good quality of life, well-being, vitality, positive affect, life satisfaction, and global self-esteem (Sharpe & Curran, 2006). Adaptation is complex and multidimensional and is a holistic concept. Consensus exists regarding the centrality of an individual’s appraisal of their adjustment: it is their adjustment and their perception, not the health care professional’s (Stanton, Collins, & Sworowski, 2001).


Just as frameworks or models are helpful in caring for those with acute, episodic disease, similarly, they may be helpful in caring for those with chronic illness. Three frameworks for practice are discussed here, although there are others in the literature.



Chronic Illness and Quality of Life


Anselm Strauss, Barney Glaser, Jeanne Quint Benoliel and colleagues were pioneers in working with dying patients and determining what kind of “care” those patients wanted. Their work (1975 and 1984) provided a rudimentary framework that addressed the issues and concerns of patients with chronic illness. The framework was simple but was an early attempt to examine the psychosocial needs of clients versus their physical needs. Basic to patient care was an understanding of the key physical and psychosocial problems:




Trajectory Framework


Corbin and Strauss (1992) developed the trajectory framework to assist nurses in (1) gaining insight into the chronic illness experience of the client, (2) integrating existing literature about chronicity into their practice, and (3) providing direction for building nursing models that guide practice, teaching, research, and policy making. A trajectory is defined as the course of an illness over time, plus the actions that clients, families, and health care providers use to manage that course (Corbin, 1998). The illness trajectory is set in motion by the pathology of the client, but the actions taken by the health care providers, patient, and family can modify the course. Even if two older adults have the same chronic condition, the illness trajectory of each individual is different and takes into account the uniqueness of the individual (Jablonski, 2004).


There are nine phases in the trajectory model, and although it could be conceived as a continuum, it is not linear. Clients may move through a phase, regress to a former phase, or plateau for an extended period. The phases include pretrajectory, trajectory, stable, unstable, acute, crisis, comeback, downward, and dying.



Shifting Perspectives Model of Chronic Illness


This model from Thorne and Paterson (1998) resulted from analyzing 292 qualitative studies on chronic physical illness that were published between 1980 to 1996. Of these, 158 studies became part of a metastudy in which client roles in chronic illness were described. The model depicts chronic illness as an ongoing, continually shifting process in which individuals experience a complex dialectic between the world and themselves (Paterson, 2001). The model considers both the “illness” and the “wellness” of the individual. The illness-in-the foreground perspective focuses on the sickness, loss, and burden of the chronic illness. With wellness-in-the-foreground, the self is the source of identify and not the disease. Neither the illness perspective or the wellness perspective is right or wrong but merely reflects the individual’s unique needs, health status, and focus at the time (Paterson, 2001).

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Nov 26, 2016 | Posted by in NURSING | Comments Off on Chronic Illness and Rehabilitation

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