• J H Barlow, K L Shaw, and K Harrison.
• Psychosocial Rheumatology Research Centre, Coventry University, Coventry CV1 5FB, UK.
• Health Educ Res. 1999 Oct 1; 14 (5): 597-610.

AbstractThere is little documented information regarding current provision of psycho-educational interventions in the context of juvenile chronic arthritis (JCA). The purpose of the present exploratory study was to gain insight and understanding of the needs and preferences of children with JCA and their parents, and to examine how these may be more adequately addressed by future psycho-educational interventions. Data were collected through focus group discussions with children, parents and health professionals, respectively. Results showed that the voices of children and their parents were as one in calling for greater availability, easier access and more comprehensive psycho-educational interventions in the context of JCA. Greater emphasis is needed upon the social and emotional aspects of chronic disease, and enhancing the self-management skills of children and their families. Moreover, content should be tailored to match broad categories of disease severity (e.g. mild or severe), developmental age and stage in the life course (e.g. child or adolescent). Group education, informal support groups, activity weekends and summer camps would be particularly welcomed by parents and children, and may serve to reduce their sense of isolation whilst providing much needed reassurance. Findings provide a useful set of signposts to guide future development of psycho-educational interventions in the field of psychosocial paediatric rheumatology.

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