Background/Purpose: Needs assessments have revealed an urgent need for disease information, self-management skills, and peer support for patients with juvenile idiopathic arthritis (JIA). Our aim was to develop and test the acceptability of an in-person and teleconference self-management program (SMP) to address these needs in adolescents with JIA.
Methods: Development phase: The SMP was developed through literature review, Lorig’s self-management theory, needs assessments of patients with JIA, and the existing evidence-base for effective SMPs. Additional input was obtained from key informants, including adolescents with JIA and interdisciplinary pediatric rheumatology team members.
Acceptability phase: A qualitative study with semi-structured focus groups was conducted to determine the acceptability of the SMP. Purposive sampling was used to recruit patients meeting the following inclusion criteria: a) ages 12-17, b) confirmed diagnosis of JIA according to the International League of Associations for Rheumatology classification criteria, c) receiving rheumatology care at the Alberta Children’s Hospital, and d) sufficient English skills. Two groups of 4 adolescents with JIA (n = 8 (50% male), mean age = 13.5, SD = 0.8, mean disease duration = 2.9 years) participated in 4 focus groups. Content analysis was used to analyze the data.
Results: Development phase: The SMP structure consists of four, 1.5 hour group sessions designed to be delivered in-person or by teleconference by pediatric rheumatology health professionals. The sessions are titled: 1) Overview and diagnosis of JIA; 2) Daily living and exercise; 3) Coping strategies; and 4) Treatment and lifestyle management. Each session includes a power point presentation, interactive activities, and discussions.
Acceptability phase: Participants supported a group-based SMP delivered in-person and/or via teleconference, reflecting it would provide the opportunity for peer support in a small-group setting (4-6 adolescents). Participants advised that a rheumatology healthcare provider should facilitate the session to increase the trustworthiness of the information provided and answer questions. Participants felt the content was appropriate and would be effective in supporting self-management of their JIA. Potential barriers to participation included distance and availability, but the option for teleconference-based participation was an appropriate solution. Weekday evenings/weekend afternoons were preferred times to attend the SMP. Adolescents provided suggestions for improvement (e.g. improved efficiency by reducing content to three sessions, and providing additional time for breaks/groups discussions and peer-support). Minor changes to the SMP have been made to reflect these recommendations.
Conclusion: This is the first evidence-based in-person/teleconference JIA SMP in Canada. The SMP was well received by the adolescents and the inclusion of a teleconference option was an innovative solution to improve accessibility. This study proved the acceptability of the SMP prior to conducting a randomized controlled effectiveness trial, with the ultimate aim of widespread program implementation.
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