Behavioral aspects of chronic illness in children and adolescents
Section snippets
Psychosocial adjustment of the pediatric patient
Chronic illness presents a variety of discrete and chronic stressors that can affect a patient's psychosocial adjustment by causing an imbalance between environmental and lifestyle demands and resources to cope with those demands [12]. The patient experiences lifestyle changes that include loss of social and physical activities, incorporation of complex medical procedures, and periodic, and often unpredictable, crisis events. These changes occur at a time when children and adolescents are still
Behavioral outcomes
Children and adolescents who have a chronic illness are at increased risk for behavioral disturbances; the risk increases with the severity and life-threat that is associated with the disease [14], [15], [16]. Additionally, the first year after diagnosis of a chronic disease carries the most risk. Children who experience earlier onset of their chronic illness generally achieve better psychosocial outcomes, but several factors, including coping strategies, clinical disease features, and overall
Stress and coping
In addition to levels of family conflict, stressors and coping strategies were identified as moderators of the effects of chronic illness on childhood adjustment [12], [26]. Coping refers to a dynamic process of cognitive and behavioral efforts to manage demands when a person is faced with a stressor [34]. All efforts are considered coping behaviors, regardless of the effect that those behaviors have on functioning. Coping strategies have generally been categorized as either emotion-focused or
Impact on the family
The diagnosis and management of a chronic illness in a child presents several acute and long-term stressors for families. Perrin and Thyen [3] suggested five stages of emotional reactions to the diagnosis of a chronic illness in childhood: shock, disbelief/denial, grief and anger, stabilization, and acceptance. Although the ordering of the stages is relatively predictable, the interpersonal dynamics and coping style of the family will determine the duration of each stage and the overall outcome
Impact on adherence to medication regimen
The effects of chronic illness are pervasive and affect the psychosocial adjustment of the child and family, as well as the probability that the child will follow his or her prescribed treatment regimen [68], Although regimen adherence is a complex issue, the research literature in this area can be summarized with the following statement: children and adolescents, like many adults, are not likely to adhere to treatments as outlined by their physicians [1], [68], [69]. A general estimate is that
Assessing adherence
Assessing adherence to a prescribed treatment regimen should be a standard component in monitoring a child's chronic illness. On-going assessment allows the treating physician to intervene at the first indication of treatment noncompliance. Intervening to increase regimen adherence will improve the patient's likelihood for treatment success and increase the cost-effectiveness of medical care, the quality of clinical decisions, and the validity of clinical trials [72]. Although the benefits of
Empirically-supported strategies to improve adherence
In 1995, the American Psychological Association Task Force on Promotion and Dissemination of Psychological Procedures outlined what is now commonly known as the Chambless criteria [88]. These criteria were designed to be tools by which treatments could be evaluated for efficacy. In 2000, Kathleen Lemanek and her colleagues [71] applied these criteria to the literature in pediatric treatment adherence. The product of their efforts was a classification of treatments for asthma, juvenile
Summary
Despite the detail that is provided on the potential negative outcomes of children and families who have chronic illnesses, most of these families show admirable resilience [12], [53]. Most children adjust to their illnesses within 1 year and most families achieve healthy stable functioning with accommodations for the illness. The challenge of adjusting to a chronic illness can provide an excellent opportunity for a child or adolescent to master crucial skills, such as emotion regulation and
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