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The Characteristics of Chronic Conditions
Sometimes it is difficult for those who are disease-free to under-stand how lives are changed, often forever, because of chronic conditions. It is also easy for health professionals to focus on treating the illness while overlooking the person who has the dis-ease (Hellstrom, Lindqvist & Mattsson, 1998). In all illnesses, but even more so with chronic conditions, the illness cannot be separated from the person (Soderberg, Lundman & Norberg, 1999). Chronic illness is something that people must contend with on a daily basis. Nurses are unable to relate to what people are facing or plan effective interventions unless they fully under-stand what it means to have a chronic illness (Carroll, 1998;
Koch, Kralik & Taylor, 2000; Lubkin, 1997). Characteristic effects of chronic illness follow:
1. Managing chronic illness involves more than managing medical problems. Associated psychological and social problems must also be addressed since living for long pe-riods of time with illness symptoms and disability can threaten identity, bring about role changes, alter body image, and disrupt lifestyles (Dean, 1999). This means that continuous adaptation and accommodation are called for, depending upon age and situation in life (Price, 1996; Sidell, 1997). Each major change or decrease in functional ability requires further physical, emotional, and social adaptation for patients and their families (Carroll, 1998; Lewis, 1998; Miller, 1999; Tappan, Williams, Fishman & Theris, 1999).
2. Chronic conditions usually involve many different phases over the course of a person’s lifetime. There can be acute periods, stable and unstable periods, flare-ups, and remis-sions. Each phase brings its own set of physical, psycho-logical, and social problems, and each requires different regimens and types of management (Corbin & Strauss, 1991).
3. Keeping chronic conditions under control requires per-sistent adherence to therapeutic regimens. Failing to ad-here to a treatment plan or to follow a regimen in a consistent manner increases the risks of developing com-plications and accelerating the disease process. However, the realities of daily life, including the impact of culture, values, and socioeconomic factors, affect the degree to which people adhere to a treatment regimen. Managing a chronic illness takes time, requires knowledge and plan-ning (Baker, 1998), and can be uncomfortable and in-convenient. It is not unusual for patients to discontinue taking medications or to alter dosages because of side ef-fects that are more disturbing or disruptive than illness symptoms. People also frequently cut back on regimens they consider overly time-consuming, fatiguing, or costly (Davis & Magilvy, 2000; Wichowski & Kubsch, 1997).
4. One chronic disease can lead to the development of other chronic conditions. Diabetes, for example, can eventually lead to neurological and vascular changes that may result in vision, cardiac, and kidney disease and erectile dysfunc-tion (Warren-Boulton, Greenberg, Lising & Gallivan, 1999).
5. Chronic illness affects the whole family. Family life can be dramatically altered as a result of role reversals (Saiki-Craighill, 1997), unfilled roles, loss of income, time spent managing illness, decreases in family socialization activities, and the costs of treatment (Dokken & Sydnor-Greenberg, 1998). Stress and caretaker fatigue are common with severe chronic conditions, and the whole family rather than just the individual needs care (Canam & Acorn, 1999; Fisher & Weiks, 2000).
6. The major responsibility for the day-to-day manage-ment of illness falls upon the shoulders of chronically ill people and their families. In today’s health care system, especially with chronic conditions, day-to-day manage-ment, or self-care, has increasingly become a major part of the role of the patient or family. The home, rather than the hospital, is the center of care in chronic conditions since this is where day-to-day management occurs. Hos-pitals, clinics, doctors’ offices, nursing homes, nursing centers, and community agencies (visiting nurse services, social services, and disease-specific associations and soci-eties) are adjuncts or back-up services to that daily home management.
7. The management of chronic conditions is a process of discovery. People can be taught how to manage their conditions. Teaching about symptoms, however, is not the same as experiencing them. Each person must dis-cover how his or her own body reacts under varying conditions—for example, what it is like to be hypo-glycemic, what activities are likely to bring on angina, and how these or other conditions can best be prevented and managed.
8. Managing chronic conditions is a collaborative process. The medical, social, and psychological problems associ-ated with chronic problems tend to be complex, especially in severe conditions. The management of chronic condi-tions should therefore be thought of as a collaborative process that involves many different health care profes-sionals working together with patients and their families to provide the full range of services that are often needed to manage at home (Corbin & Cherry, 1997).
9. The management of chronic conditions is expensive. As indicated in Table 10-1, billions of dollars are spent every year on health care for people with chronic conditions. The money pays for hospitalizations and the purchase of equipment, medications, and supportive services. For ex-ample, hospital lengths of stay and charges are higher for acute pediatric conditions if a child also has a chronic condition (Hodgson & Cohen, 1999; Silber, Gleeson & Zhao, 1999). Overall health care costs are not likely to de-crease until there is a substantial downward trend in the incidence of chronic conditions and the costs of chronic health care.
10. Chronic conditions raise difficult ethical issues for the pa-tient, health care professionals, and society. No easy so-lutions exist to problems such as how to establish cost controls, how to allocate scarce resources (eg, kidneys and hearts for transplantation), how to determine what constitutes quality of life, and when to terminate life support. Patients, families, and society respond to ethical issues ac-cording to their own moral standards and definitions of quality of life.
11. Living with chronic illness means living with uncertainty (Mishel, 1999; Price, 1996). Although health care pro-fessionals have some notion about the usual progression of a chronic disease such as Parkinson’s disease, so many specific variables enter into each case that no one can pre-dict with certainty an individual’s illness course (that is, how the person will respond to treatment and how quickly or even whether a disease will progress). Even when a patient is “in remission” or “disease-free,” he or she experiences a lingering doubt and dread that the ill-ness will reactivate (Smeltzer, 1992; Wiener & Dodd, 1993).
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