Understanding Chronic illness

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Chronic health problems affect people of all ages—they occur in the very young, the middle-aged, and the very old. Chronic conditions do, however, increase in frequency with age, and elderly people often have multiple chronic disorders (Van den Akker, Buntinx, Metsemakers, Roos and Knottnerus, 1998). Chronic illnesses are found in all socioeconomic, ethnic, cultural, and racial groups; certain diseases, however, occur more
frequently in some groups than in others (Kington and Smith, 1997).

 

Chronic health problems affect people of all ages—they occur in the very young, the middle-aged, and the very old


“Chronic conditions” are defined as medical conditions or health problems with associated symptoms or disabilities that require long-term (3 months or longer) management (Robert Wood Johnson Foundation, 1996). The condition may be due to illness, genetic factors, or
injury. Management of such conditions includes learning to live with symptoms and/or disabilities and coming to terms with identity changes brought about by having a chronic condition.

It also consists of carrying out the lifestyle changes and regimens that are designed to keep symptoms under control and to prevent complications. Although some people take on what might be called a “sick role” identity, most people with chronic conditions do not consider themselves to be sick or ill and try to live as normal a life as is possible.
Only when complications develop or when symptoms become severe enough to interfere with performance of daily life activities do most people who are chronically ill think of themselves as being sick or disabled (Nijhof, 1998).

Although each chronic condition has its own specific physiologic characteristics, chronic conditions do share common qualities. Many chronic conditions, for example, have pain and fatigue as associated symptoms. Some degree of disability is usually present in severe or advanced chronic illness, limiting the patient’s participation in activities (Collins, 1997).
Many chronic conditions require therapeutic regimens to keep them under control. Unlike the term “acute,” which implies a curable and relatively short disease course, chronic describes a long disease course and conditions that may be incurable. It is this characteristic of duration that often makes managing chronic conditions so difficult for those who must live with them.

People who develop chronic conditions may react with shock, disbelief, depression, anger, resentment, or a number of other emotions. How people react and cope with chronic conditions is usually similar to how they react to other events in their lives, depending, in part, on their understanding of the condition and their perceptions of its potential impact on their own and their family’s lives. Adjustment to chronic illness is affected by various factors:

• Personality before the illness

• Unresolved anger or grief from the past

• Suddenness, extent, and duration of lifestyle changes necessitated by the illness

• Family and individual resources for dealing with stress

• Stages of individual/family life cycle

• Previous experience with illness and crises

• Codependency in family systems (Lewis, 1998)

Psychological, emotional, and cognitive reactions to chronic conditions are likely to occur at the initial onset, but they may also recur if symptoms worsen or recur after a period of remission. Symptoms associated with chronic illnesses are often unpredictable, and some are perceived as crisis events by patients and their families, who must contend with both the uncertainty of chronic illness and the changes it brings to their lives.

Causes of chronic illness

Chronic conditions occur in people of every age group, socioeconomic level, and culture. In 1995, an estimated 99 million people in the United States had chronic conditions, and it has been projected that by the year 2030 about 150 million people will be affected (Robert Wood Johnson Foundation, 1996). Not every chronic condition is disabling; some cause
only minor inconveniences. Many, however, are severe enough to cause major activity limitations.

Chronic conditions have become the major cause of health related problems in developed countries, and even developing countries are experiencing an increase in chronic conditions, giving these countries the dual burden of trying to eradicate infectious diseases while learning to manage chronic conditions (Kickbusch, 1997). Some of the reasons that so many people are afflicted with chronic conditions include the following:

• A decrease in mortality from infectious diseases, such as smallpox, diphtheria, and other serious conditions

• Longer life spans because of advances in technology and pharmacology, improved nutrition, safer working conditions, and greater access (for some people) to health care

• Improved screening and diagnostic procedures, enabling early detection and treatment of diseases

• Prompt and aggressive management of acute conditions, such as myocardial infarction and AIDS-related infections

• The tendency to develop single or multiple chronic illnesses with advancing age

• Modern lifestyle factors, such as smoking, chronic stress, and obesity, that increase the risk for chronic illnesses, such as pulmonary disease, hypertension, and cardiovascular disease.

Characteristics of chronic conditions

1. Managing chronic illness involves more than managing medical problems. Associated psychological and social problems must also be addressed since living for long periods 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 and Theris, 1999).

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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 remissions. Each phase brings its own set of physical, psychological, and social problems, and each requires different regimens and types of management (Corbin and Strauss, 1991).

3. Keeping chronic conditions under control requires persistent adherence to therapeutic regimens. Failing to adhere to a treatment plan or to follow a regimen in a consistent manner increases the risks of developing complications 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 planning (Baker, 1998), and can be uncomfortable and inconvenient. It is not unusual for patients to discontinue taking medications or to alter dosages because of side effects that are more disturbing or disruptive than illness symptoms.

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 dysfunction (Warren-Boulton, Greenberg, Lising and Gallivan, 1999).

5. Chronic illness affects the whole family. Family life can be dramatically altered as a result of role reversals (SaikiCraighill, 1997), unfilled roles, loss of income, time spent managing illness, decreases in family socialization activities, and the costs of treatment (Dokken and 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 and Acorn, 1999; Fisher and Weiks, 2000).

6. The major responsibility for the day-to-day management 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 management, 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. Hospitals, clinics, doctors’ offices, nursing homes, nursing centers, and community agencies (visiting nurse services, social services, and disease-specific associations and societies) 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 discover how his or her own body reacts under varying conditions—for example, what it is like to be hypoglycemic, 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 associated with chronic problems tend to be complex, especially in severe conditions. The management of chronic conditions should therefore be thought of as a collaborative process that involves many different health care professionals
working together with patients and their families to provide the full range of services that are often needed to manage at home (Corbin and Cherry, 1997).

9. The management of chronic conditions is expensive. The money pays for hospitalizations and the purchase of equipment, medications, and supportive services. For example, hospital lengths of stay and charges are higher for acute pediatric conditions if a child also has a chronic condition (Hodgson and Cohen, 1999; Silber, Gleeson and Zhao, 1999). Overall health care costs are not likely to decrease 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 patient, health care professionals, and society. No easy solutions exist to problems such as how to establish cost controls, how to allocate scarce resources (e.g., 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 according 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 professionals 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 predict 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 illness will reactivate (Smeltzer, 1992; Wiener and Dodd, 1993).

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