Development of a comprehensive support website for parents of children with juvenile idiopathic arthritis

Introduction: Previous research suggests that, even in the context of an excellent and well-supported clinical service, parents may experience difficulties in managing their child's JIA and further tailored information and support strategies are beneficial. Aims: To provide this additional support the Sparks CHARMS JIA Website for Parents was developed and, unlike other websites, designed to be provided as an adjunct to the clinical service. Method: The website development was systematic. Content was derived from: a review of literature on parents' experiences of having a child with JIA; review of existing JIA websites; a survey of parents' views about JIA1; interviews and focus groups with parents and focus groups, written drafts and peer review from healthcare professionals (HCPs). A website consultant designed the site for layout, usability, acceptability, and interactive features. The resulting prototype website was tested by seven parents to evaluate usability, navigation, structure, layout and content. Results: The Sparks CHARMS JIA Website for Parents has been developed. Its content includes information about JIA and its treatment, including medication and therapies, as well as support and techniques to help parents manage the challenges of their child's JIA. These techniques include pain management, assisting with adherence, helping their child manage at school, family relationships and maintaining their own wellbeing. Conclusion: A comprehensive website for parents of children with JIA has been systematically developed and the next step will be to evaluate its efficacy in an RCT.