Residential workshop for parents of adolescents with juvenile idiopathic arthritis: A preliminary evaluation

Caring for a child with juvenile idiopathic arthritis (JIA) places considerable demands upon parents. Parents experience elevated levels of physical health complaints and psychosocial problems such as stress, anxiety and depression. The purpose of this study was to evaluate the effectiveness of a residential workshop and information pack in terms of reducing parental perceptions of disability-related stress and improving quality of life. Twenty-three parents of children with JIA attended a three-day residential workshop which provided disease-related information and education, and social and emotional support. Parents also received an information pack covering a range of JIA-related welfare, education and employment topics. Twenty-eight parents who had expressed an interest in but who were unable to attend the workshop formed a comparison group. Both groups of parents completed questionnaires before and three months following the workshop. Outcome measures were parents' perception of their own and their child's health status, parents' perception of disease-related stress and parents' psychosocial wellbeing. At three months, workshop parents reported fewer episodes of disease-related stress, especially for themselves, and an improvement in mental health compared to the comparison group. Telephone interviews with the workshop parents provided an insight into possible reasons behind the improvements. The results suggest that the workshop and information pack could be an effective intervention for reducing the stressors associated with caring for a child with JIA and are worthy of future investigation.