The Relationship of Illness Representations to Caregivers\u27 Representations and to Self-Concept in Youths with Juvenile Arthritis

Objective: This study investigated the relationship between illness representations in children with juvenile idiopathic arthritis (JIA) and their caregivers as well as the relationship between children\u27s illness representations and self-concept. Methods: Thirty-six children with JIA (11 - 19 years, mean age = 15.50) and their caregivers participated. Patients completed a battery of assessments measuring illness representations (IPQ-R), self-concept (SPPC or SPPA), depression (CDI), IQ (WASI Vocabulary and Matrix Reasoning), and logical thinking (GALT). Caregivers completed self-report measures of illness representations (IPQ-R), depression (BDI-II) and functional ability for their children (CHAQ). Results: Results showed that children with JIA perceived their JIA as lasting a long time and having serious consequences. This finding is consistent with the medical nature of the disease. In addition, they believed that they had a high degree of personal control of their illness, and they had confidence in the effectiveness of their treatment to control JIA. Children believed they had a coherent understanding of their JIA and that it caused them minimal distress. A developmental trend in children\u27s illness representations of JIA was not demonstrated as expected. In addition, children\u27s illness representations were not associated with self-concept as hypothesized except for scholastic competence which was positively associated with personal control and treatment control and behavioral conduct which was negatively associated with timeline. Poor to moderate agreement was obtained between children and caregivers on reports illness representations providing partial support for the researcher\u27s hypothesis. Depression did not account for variability in agreement as expected except for the dimensions. Conclusions: Results indicate that children with JIA appear to have an accurate understanding of their illness and that they are able to understand their illness along the same illness dimensions as proposed by the Self-Regulation Model. The finding of poor agreement between patients and caregivers on reports of illness representations highlights the importance of obtaining clinical information from both sources during a doctor\u27s visit. Key Words: Juvenile idiopathic arthritis, Illness representations, Illness perceptions, Illness beliefs, Self-concep