Long Term Adaptation to


J.M. Perrin (1985) defined psychosocial adjustment as encompassing psychological adjustment, social adjustment, and school performance. Studies have shown that children and their families are remarkably resilient in adapting to the challenges presented by a physical illness. The majority of chronically ill children and their parents do not have identifiable mental health, behavioral, or educational difficulties (Wallander and Thompson 1995). However, research has shown that children with chronic physical illnesses have an increased risk of subthreshold or subclinical mental health problems (Wallander and Thompson 1995). The rate of emotional disorders in children under age 18 with physical illnesses has been found to be approximately 25%, compared with 18%-20% in medically healthy children (Wallander and Thompson 1995).

Currently, information is limited regarding the types of adjustment and psychiatric problems that are experienced by chronically ill children, but available research suggests that these children primarily have internalizing syndromes (R.J. Thompson et al. 1990). In a population of children with cystic fibrosis, 37% of those who received psychiatric diagnoses were diagnosed with an anxiety disorder, 23% with oppositional defiant disorder, 14% with enuresis, 12% with conduct disorder, and 2% with a depressive disorder (R.J. Thompson et al. 1990). The issue of whether these indicators of psychosocial functioning change over time is complicated. Although there is reason to suspect that changes in illness severity and illness status over time might influence adjustment, research suggests that psychiatric problems, when they are present in chronically ill children, persist over time. One study found that nearly two-thirds of children with chronic physical illnesses who had been classified as "severely psychiatrically impaired" were still impaired 5 years later (Breslau and Marshall 1985).


Coping Style

Problem-focused coping is not usually adaptive in the context of acute medical stressors, because in these situations the stressor itself is largely uncontrollable. However, the opposite may be true about long-term adaptation to chronic illness. Studies have found that in patients with juvenile diabetes, primary control (or problem-focused coping) predicted better adjustment than secondary control (or emotion-focused coping) (Band 1990). The relative adaptiveness of problem-focused coping versus emotion-focused coping over the course of an illness characterized by relapses and remissions is an area for further research, because different coping strategies may be found to be effective during relapses and during remissions.

Another approach to examining coping style is to assess the child's health locus of control. Chronic illnesses often involve a loss of control for children, and beliefs about personal influences on outcome in medical contexts vary widely (Williams and Koocher 1998). Patients and families may have an internal locus of control (i.e., believe they can influence outcomes) or an external locus of control (i.e., believe the outcome is determined by fate or by powerful others, such as health care personnel). Patients with an internal locus of control often have the best adjustment; those who believe outcomes are determined by powerful others often do well during a hospitalization but have difficulty following through afterward; and those who believe the outcome is influenced by fate may be more nonadherent or experience depressed mood (Williams and Koocher 1998).

An individual's or a family's health locus of control may change over time. Often, a chronically ill child will develop an increasingly external health locus of control as time passes. This may be because the child experiences a loss of control due to living with a physical condition characterized by hospitalizations and an unpredictable course (Williams and Koocher 1998). Health locus of control interacts with other dimensions discussed in this chapter, such as a child's developmental level (e.g., younger children rely heavily on caregivers), a family's background and cultural beliefs, and a child's anxious temperament (Williams and Koocher 1998).

Developmental Level

In contrast to the acute illness literature, studies have consistently failed to show that age affects behavior problems or self-esteem in chronically ill pe-diatric populations (Wallander and Thompson 1995). However, studies are needed to assess the influences of child age on developmental adjustment, particularly in terms of the effects of developmental transitions such as school entry and high school graduation.

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