“I just want to get better”: experiences of children and youth with juvenile idiopathic arthritis in a home-based exercise intervention

BACKGROUND: Physical activity is essential for ensuring optimal physical function and fitness in children with juvenile idiopathic arthritis (JIA). Although exercise intervention trials informed current clinical practice, few studies addressed why children with JIA do or do not participate in exercise interventions. We aimed to describe perceived barriers and facilitators to the uptake and adherence to a 6-month home-based exercise intervention for children diagnosed with JIA and their parents. METHODS: A convenience sample of children (n = 17) and their parents (n = 17) were recruited from a group of 23 child-parent dyads participating in an exercise intervention study; the Linking Exercise, Activity and Pathophysiology Exercise Intervention (LEAP-EI) study. Child-parent dyads completed in-depth semi-structured one-to-one interviews with a trained interview moderator prior to starting the exercise program and 11 dyads completed follow-up interviews at the end of the 6-month program. We also conducted ‘exit’ interviews with one child-parent dyad, one child and one parent following three participants’ withdrawal from the exercise intervention. Interviews were transcribed and transcripts were analyzed using a five-step framework analysis to categorize data into themes. RESULTS: Thematic analysis of pre-exercise program interview transcripts revealed three reasons child-parent dyads initiated the exercise program: 1) potential health benefits, 2) selflessness and 3) parental support. Analysis of post-exercise intervention transcripts identified four main themes within a priori themes of barriers and facilitators to program adherence (median of 46.9%; 5.4, 66.7 IQR): 1) parental support, 2) enjoyment, 3) time pressures (subthemes: time requirement of exercise, scheduling, forgetting) and 4) physical ailments. CONCLUSION: Major barriers to and facilitators to exercise for children with JIA fell into three categories: personal, social and programmatic factors. These barriers were not unlike those that emerged in previous exercise intervention trials with healthy children and youth. There is a need to develop effective strategies to engage children in physical activity and to overcome barriers that prevent them from doing so. Future initiatives may potentially engage children in developing solutions to enhance their participation in and commitment to physical activity.