Journal of Pediatric Psychology, Vol. 28, No. 1, 2003, pp. 45-46
© 2003 Society of Pediatric Psychology
Commentary: Are Children With JRA and Their Families at Risk or Resilient?
University of Maryland, Baltimore County
All correspondence should be sent to Lynnda M. Dahlquist, Department of Psychology, University of Maryland, Baltimore County, 1000 Hilltop Circle, Baltimore, Maryland 21250. E-mail: dahlquis{at}umbc.edu.
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 counterparts, one would not expect them to show significant psychosocial differences. Perhaps the psychosocial consequences of JRA emerge only at or above certain levels of disease severity or functional impairment. If so, it will be crucial to include larger numbers of more severely ill children in future studies and to examine their outcomes separately.
The impact of JRA may also depend on the age of the patient or the chronicity of the illness. Reiter-Purtill et al. noted a greater decline in sociometric ratings for more severely ill children over time, suggesting the possibility that adolescence is a particularly vulnerable time for these patients. On the other hand, duration of illness, rather than developmental stage, may be the important variable. The impact of JRA may be subtle, but cumulative, with the strongest results apparent after years of illness.
Similarly, family adaptation may vary as a function of the age of the patient or the onset and duration of the illness. The parents participating in the Gerhardt et al. study, who were evaluated 6 years after the child's diagnosis, looked very similar to the parents of healthy children. The authors note, however, that social support may have played a more important role in family adjustment earlier in the illness. It also may be the case that only the parents of children with severe disease or severe functional limitations have elevated social support needs. The care of children with mild or remitted JRA may not pose significantly different burdens on parents.
Finally, JRA may affect boys and girls differently. Given the importance of
physical prowess in the social status of boys
(Adler, Kless, & Adler,
1992), boys may experience more severe psychosocial consequences
of the physical limitations of arthritis. Thus, more severely ill boys may be
most at risk for social adjustment problems.
However, the study of age, developmental processes, gender, and disease severity will be difficult to accomplish. Much larger samples of both boys and girls with more severe JRA are needed. Furthermore, many questions regarding developmental processes will require longitudinal studies. Given the relative rarity of JRA compared with other chronic conditions, the lower incidence of JRA in boys, and the numbers of children with more severe forms of the disease, it may be impossible to achieve these objectives without multisite collaboration.
Received August 16, 2002; accepted August 19, 2002
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Adler, P. A., Kless, S. J., & Adler, P. (1992). Socialization to gender roles: Popularity among elementary school boys and girls. Sociology of Education, 65, 169-187.[CrossRef]
Cavell, T. A. (1990). Social adjustment, social performance, and social skills. A tri-component model of social competence. Journal of Clinical Child Psychology, 19, 111-122.[CrossRef]
Hartup, W. W. (1992). Peer relations in early and middle childhood. In V. B. Van Hasselt & M. Hersen (Eds.), Handbook of social development: A lifespan perspective (pp. 257-281). New York: Plenum.
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