A Multimodal, Prospective Assessment of Outcome in Families of Children with Early Onset of Juvenile Chronic Arthritis*

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Abstract

The aim of the study was to assess long-term outcome for families of children with juvenile chronic arthritis (JCA). Twenty-five families of children with early onset of JCA were assessed by semistructured interviews and questionnaires at first admission to the pediatric rheumatology clinic and at 9-year followup. Sixtyone families of children from the general population served as a control group. In the JCA group, the levels of maternal mental distress and chronic family difficulties were significantly improved from first admission to followup. Assessed by the Kvebaek Family Sculpture Technique, parent-child distances were significantly smaller in the JCA group as compared to the control group, and parents expressed significantly more criticism toward the JCA child. Level of maternal mental distress and quality of marital relationships were comparable in the two groups. Adolescents with JCA reported more overprotection from parents than adolescents in the general population. Although the families had a favorable outcome, our findings indicate a need to focus on interventions that support the achievement of independence in children with JCA.

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