Living with Juvenile Idiopathic Arthritis: Children's Experiences of Participating in Home Exercise Programmes

Abstract

Juvenile idiopathic arthritis (JIA) is used to describe the different subgroups of arthritis in children. JIA is the most common chronic rheumatic condition in children. The long-term consequences are not limited to physical disabilities but also have an impact on the child's social, emotional and cognitive development. Home exercise programmes are a major part of the complex treatment regimen for JIA. Research to date is limited in providing insights into children's perspectives about JIA. This paper describes a qualitative study undertaken to identify children's perceptions about their participation in home exercise programmes. Using semi-structured interviews, the perspectives of 13 children (aged 8–16 years) about their experiences of living with JIA and specifically about participating in therapist-prescribed exercise programmes were investigated. Two major themes highlighted the pervasive impact of JIA on the children's lives. First, the children described living with JIA and associated feelings of ‘being different’. Secondly, they discussed their understanding of home exercise programmes and the barriers and facilitators to participation. Key barriers were having better things to do, time required, laziness, boredom, forgetfulness and pain. Facilitators included the incorporation of exercises into everyday routines, making them fun and having rewards. Clinical implications and avenues for future research are also outlined.