Self-management needs of Irish adolescents with Juvenile Idiopathic Arthritis (JIA): How can a Canadian web-based programme meet these needs?

Abstract

Background: Juvenile Idiopathic Arthritis (JIA) affects over 1000 children and adolescents in Ireland, potentially impacting health-related quality-of-life. Accessible self-management strategies, including Internet-based interventions, can support adolescents in Ireland where specialist rheumatology care is geographically-centralised within the capital city. This study interviewed adolescents with JIA, their parents, and healthcare professionals to (i) explore the self-management needs of Irish adolescents; and (ii) evaluate the acceptability of an adapted version of a Canadian JIA self-management programme (Teens Taking Charge: Managing Arthritis Online, or TTC) for Irish users. Methods: Focus groups and interviews were conducted with Irish adolescents with JIA (N = 16), their parents (N = 13), and Irish paediatric healthcare professionals (HCPs; N = 22). Adolescents were aged 12-18 (Mage = 14.19 years), and predominantly female (62.5%). Participants identified the needs of adolescents with JIA and evaluated the usefulness of the TTC programme. Data were analysed using a thematic analysis approach. Results: Five themes emerged: independent self-management; acquiring skills and knowledge to manage JIA; unique challenges of JIA in Ireland; views on web-based interventions; and understanding through social support. Adolescents acknowledged the need for independent self-management and gradually took additional responsibilities to achieve this goal. However, they felt they lacked information to manage their condition independently. Parents and adolescents emphasised the need for social support and felt a peer-support scheme could provide additional benefit to adolescents if integrated within the TTC programme. All participants endorsed the TTC programme to gain knowledge about JIA and offered suggestions to make the programme relevant to Irish users. Conclusions: There is scope for providing easily-accessible, accurate information to Irish families with JIA. The acceptability of adapting an existing JIA self-management intervention for Irish users was confirmed.