Commentary: Are children with JRA and their families at risk or resilient?
نویسنده
چکیده
The articles in this series address a fundamental question in pediatric psychology—whether children with chronic illnesses are generally psychologically well adjusted (or at least no more maladjusted than their peers) or whether their illness places them or their families at greater risk for emotional or behavioral difficulties. As the rich literature reviews of these three articles highlight, many studies offer encouraging findings, suggesting that many children with juvenile rheumatoid arthritis ( JRA) and their families adapt remarkably well to the challenges posed by a painful and potentially incapacitating illness. Why, then, do so many researchers continue to hunt for indicators of maladjustment? I suspect that the continuation of this line of study reflects, at least in part, the fact that many pediatric psychologists are practitioners as well as scientists and therefore see children with identified problems. As clinicians, it is nearly impossible to ignore the social consequences faced by children with systemic JRA, whose cushingoid features and weight gain have transformed their appearance. Nor can one easily discount the dilemmas faced by parents, who must decide when to comfort versus when to push their children to go to school or to do physical therapy exercises despite their children’s pain. Such clinical observations make it hard to imagine that the experience of JRA does not increase the risk of social or behavioral difficulties and also increase parenting stress. However, to determine whether the concerns of referred youths and families reflect issues shared by other children with JRA and their families, researchers may need to reexamine what they study as well as how they choose to study it. As the studies in this series illustrate, looking at the adaptational processes that the illness is likely to disrupt may offer greater utility than studying global indicators of adjustment alone. For example, LeBovidge, Lavigne, Donenberg, and Miller (this issue) suggest that a closer examination of specific anxiety and depression symptoms may tell us more about the emotional experiences of children with JRA than would global assessments of internalizing or externalizing behavior problems. Gerhardt et al. (this issue) propose that the contextual variable of social support plays an important role in the global outcomes of parental well-being and family functioning. Similarly, Reiter-Purtill, Gerhardt, Vannatta, Passo, and Noll (this issue) break down the construct of social adjustment to examine several important subdimensions of social functioning that could be affected by JRA, including social reputation, social preference, friendship, physical appearance, and athletic competence. Future studies could continue this line of investigation by identifying the specific types of social experiences that JRA may affect and the concomitant developmental processes that these changes in social experience may disrupt. For example, one needs only one peer companion to develop a reciprocal friendship (Hartup, 1992). Unless a child is homebound or hospitalized for long periods of time, JRA may not affect the development of a close friendship. On the other hand, the development of other aspects of social competence, such as self-confidence, social problem-solving skills, or popularity (Cavell, 1990), requires much more frequent interactions with multiple peers. Children with JRA who miss a lot of school or cannot participate in sports or other extracurricular activities may be at risk for difficulties in these areas of social adjustment. In addition, considering children with JRA as a unitary group may obscure important relations. As LeBovidge et al. reported, children with more complex, severe rheumatological conditions have poorer psychosocial outcomes than do children with JRA. It would also seem reasonable to expect that children with many affected joints, more severe pain, or more limitation of movement (and their parents) may fare worse than children with only a few swollen joints. If the day-to-day experiences of children with few symptoms or children in complete or partial remission do not differ from those of their healthy counter-
منابع مشابه
Comparing parental distress, family functioning, and the role of social support for caregivers with and without a child with juvenile rheumatoid arthritis.
OBJECTIVE To assess parental distress, family functioning, and social support among parents of children with a lifetime diagnosis of juvenile rheumatoid arthritis (JRA) and comparison families. METHODS Parents of 64 children with JRA (64 mothers, 46 fathers) completed questionnaires and in-home interviews along with 64 matched comparison families. Average time since diagnosis for children wit...
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ورودعنوان ژورنال:
- Journal of pediatric psychology
دوره 28 1 شماره
صفحات -
تاریخ انتشار 2003