Chronic Illness Adaptation

The experience of illness requires many adaptation and adjustments. Discuss the processes involved in coping with a serious illness. “It is more important to know what kind of patient has the disease, than what kind of disease the patient has”- William Osler
Different individuals react differently to developing a chronic illness. Their reactions depend on many factors, such as their coping skills and personalities, the social support they have, the nature and consequences of their illness and the impact of the illness on their daily functioning. At the very least, having a chronic condition involves frequent impositions on the patient and their families that require adaptation and adjustment.
Leventhal and colleagues (Leventhal, Meyer & Nerenz, 1980; Leventhal & Nerenz, 1985) defined illness beliefs as a patient’s own
implicit, common sense beliefs about his or her illness. They proposed that these beliefs provide a framework, or schema, for coping with and understanding an illness, and for telling us what to look out for if we believe that we are becoming ill. Using interviews with patients suffering from a variety of illnesses, Leventhal et al. identified five dimensions of illness beliefs:
1.
Identity refers to the label given to the illness (the medical diagnosis) and the symptoms experienced
2. The perceived cause of the illness – this may be biological (e.g. a virus) or psychosocial (e.g. stress or health-related behaviour). Patients may also hold representations of illness that reflect a variety of different causal models; for example, ‘My illness was caused by a virus’ versus ‘My illness was caused by being
run-down’.
3. Time line refers to beliefs about how long an illness will last, whether it is acute (i.e. short term) or chronic (i.e. long-term); for example ‘My illness will be over in a few days’.
4. Consequences refer to the patient’s perceptions of the possible effects of the illness on his or her life. These may be physical (e.g. pain, lack of mobility), emotional (e.g. loss of social contact, loneliness) or a combination of factors.
5. Curability and controllability refers to the patient’s beliefs about whether their illness can be treated and cured, and the extent to which its outcome is controllable (either by themselves or by others): for example, ‘If I rest, my illness will go away’, and ‘If I get medicine from my doctor, my illness will go away’
Coping can be defined as a psychological defence to a stress, which is in this case a chronic illness. Coping strategies vary both within (they change over time) and between (they are person specific) individuals. Coping effectiveness demands a good balance between the person and their environment and the coping strategies adopted to manage the illness. (Moos & Schaefer 1986) Successful coping requires a flexible and versatile repertoire of coping strategies and the combined use of both problem-focused and emotional focused efforts. (Lazarus & Folkman 1984) That is, problem focused may be more adaptive under changeable and controllable conditions while emotional focused coping may be more adaptive under unchangeable and uncontrollable situations. Regardless of their level of effectiveness, coping strategies may be viewed as a mediating factor between stressful encounters (illness) and the ultimate psychosocial outcomes. (Zeidner & Saklofske 1996)
Examples of coping strategies for chronic health problems include, seeking information about the health problem and the treatment procedures. Learning to provide one’s own medical care, such as self-administrating insulin shots, with this patients gain a sense of control and personal effectiveness. Setting attainable goals and recruiting instrumental and emotional support from family and friends. Gaining a manageable perspective on the health problem and its treatment by finding long-term “purpose” or “meaning” for the experience. Patients often do this by applying religious beliefs or by recognising how the experience has changed then in positive ways. (Moos 1992)
The first reaction most individuals experience when a physician diagnoses a chronic health problem is- shock. Shock occurs to some degree in any crisis situation people experience. Then, after a period of using emotional-focused strategies, such as denial and grief, reality begins to intrude: the symptoms remain or get worse. People who use denial and other avoidance strategies do so to control their emotional responses to a stressor, especially when they believe they can do nothing to change the situation. Chronic health problems usually require that patients and their families make permanent behavioural, social and emotional adjustments. (Croyl & Ditto; Lazarus & Folkman, 1964b)
Crisis theory describes factors that influence how people adjust during a crisis, such as having an illness. (Moos & Schaefer 1986) The outcome of the crisis- or the adjustment the person makes, depends on the coping process, which in turn depends on three contributing influences: illness related factors, background and personal factors and physical and social environmental factors. Some health problems present greater threat to the person than others do, for example: they may be more disabling, disfiguring, painful or life threatening. The greater the threat patients perceive for any of these circumstances, the more difficulty they’re likely to have coping with their conditions.(Cohen & Lazarun,1979) Many people with chronic illness feel self-conscious about their health problems or even stigmatized by them and want to hide them from others.(Scambler,1984)
People who cope well with chronic health problems tend to have hardy or resilient personalities that allow them to see a good side of a difficult situation. (Pollock, Christia, & Sands 1991) The ways individuals cope with chronic health problems also depend on many other background and personal factors, such as age, gender, social class, philosophical or religious commitments, emotional maturity and self-esteem. (Moos & Schaefer 1986) Another personal factor that affects how people cope with health problems is their self-blame for their condition. People who believe they are personally responsible for developing a chronic illness and its symptoms tend to cope poorly with their condition. (Schiaffino, Shawaryn, & Blum, 1998)
Crisis theory proposes that coping begins with the patient’s cognitive appraisal of the meaning or significance of the health problem on his or her life. The outcome of this appraisal leads the individual to formulate an array of adaptive tasks and to apply various coping strategies to deal with these tasks. (Moos, 1982)
Tasks related to the illness or treatment, which involve learning to cope with the symptoms or disability the health problem causes, adjust to the hospital environment and the medical procedures needed to treat the problem and develop and maintain good relationships with their practioners. Tasks related to general psychosocial functioning, which involve striving to control negative feelings and retain a positive outlook for the future, maintain a satisfactory self-image and sense of competence preserve good relationships with family and friends and prepare for an uncertain future. Patients are likely to adapt well to a chronic condition if their family members participate actively in their treatment regimens, encourage them to be self-sufficient and respond to their needs in a caring and sensitive manner.
The term adaptation refers to the process of making changes in order to adjust constructively to life’s circumstances. For example almost all chronically ill individuals will limit certain activities, substitute one activity for another, or take action to assure that an activity can occur in some form such as more slowly or in less time. Individuals who show effective long term adaptation to chronic illness often have psychological resources that enable them to apply appropriate coping strategies to deal with the problems they face. (Gignac, Cott, & Bradley 2002) Mortality is the main issue of concern to patients in the first few months of convalescence with a seriously life threatening illness. During this time patients can show optimistic attitudes, hope they will be cured, but begin to view their plans for the future more tentatively. (Moos, 1982) As a patients recovery progresses, he or she is able to return more and more to a regular routine, often gaining satisfaction by once again being able to do simple day to day activities. Patients often try to isolate the disease from the rest of their lives by focusing on other things. (Dahlberg 1977) In the process of adapting to high-mortality illness over a long period of time, some individuals make helpful cognitive adjustments, such as positive reappraisals of their life situations. Some get a sense of control over their illness and some patients restore their self-esteem by comparing themselves with less fortunate people.(Taylor, 1983) These cognitive adjustments seem to promote adaptation, however not all individuals achieve high adjustment levels, particularly if they perceive low levels of social support in the months after diagnosis. (Helgeson,Snyder, & Seltman, 2004)
Most people with life-threatening chronic illnesses manage to adapt reasonably well to their conditions over time after the initial crises, and so do the closest people in their lives. But when their conditions worsen and progress to a terminal phase, new crises emerge that require intense coping efforts. The principle coping mechanism people use during the phase of terminal illness is denial. (Hackett & Wiseman, 1985)
If and when a chronic condition deteriorates and no cure is likely, the illness is considered terminal. One factor that affects how people adapt to terminal illness is the age of the patient. Young children have little understanding of the meaning of death; by about 8 years of age, a child understanding is fairly complete. Adolescents and young adults react to their impending deaths with very strong feelings of anger and emotional distress. Dying people may react to their conditions with denial, anger, bargaining, depression and acceptance.
Psychiatrist John Hinton (1984) has described three types of stress terminal patient’s experience. First, they must cope with the physical effects of the worsening conditions, such as pain, difficulty breathing, sleeplessness, or loss of bowel control. Second, their conditions severely alter their styles of living, restricting their activity and making them highly dependent on others. Third, they typically realize that the end of their lives in near, even when they are not told so. If they are in a hospital, the may think about never going home again or no longer being able to experience the intimacy they used to have with the those they love.
Elisabeth Kubler-Ross (1969) proposed that people’s adjustment to dying usually follows a pattern, passing through a sequence of stages. Stage 1- Denial: The first reaction to the prognosis of death involves refusing to believe it is true. Denial can be a valuable first reaction by giving patients time to mobilize other coping strategies and motivation to get second opinions. According to Kubler-Ross, denial soon fades in most patients and is replaced by anger. They resent others who are healthy and may show their anger in outbursts towards almost anyone. The next stage is “Bargaining”- at this point, patients try to change their circumstances by offering to “make a deal”. Most of the bargains they try to negotiate are with God. When bargaining no longer helps and patients feel their time in running out, hopelessness and depression set in. They grieve for the things they had in the past and for things they will miss in the future. Then finally they reach acceptance, patients who live long enough may reach the last stage in which they are no longer depressed, but feel a quite calm and readiness for death.
Do Kubler-Ross’s stages correctly reflect the emotional reactions most dying patients experience as they cope with terminal illnesses?
Available evidence does not support the idea that most individuals adjust to dying with a predictable and orderly sequence of coping reactions. (Reed et al, 1994) Some people may go through a specific stage, such as anger more than once during their adjustment; others have more than one emotional reaction simultaneously and some seem to skip stages. Despite these shortcomings, Kubler-Ross’s work has many positive effects. For one thing, it has been influential in stimulating people’s awareness and discussion of the dying process and the needs of terminal
patients.
Ideally, intervention programs to help individuals with chronic health problems involve interdisciplinary teams of professionals- physicians, nurses, psycologists, physical and occupational therapists, vocational counsellors, social workers, and recreational therapists- working in an integrated manner toward overall goals of adapting and adjusting to chronic illness.(Bleiberg, Ciulla, & Katz 1991) Psychologists contribute to this process by helping each client cope with the psychosocial implications of his or her medical condition and by using behavioural and cognitive principles to enhance the person’s participation in and adherence to the therapeutic regimen. The goal is to help patients reach realistic expectations through education and understanding of their illness. From a treatment perspective, this means achieving the highest level of functioning possible within the constraints of the patient’s illness. It is impossible to predict how each individual is going to react to a diagnosis of a chronic disease, but it is positive that acceptance and coping is enhanced through patient education.

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