Living with Juvenile Idiopathic Arthritis: Parents' Experiences of Treatment Regimens and Home Exercise Programmes

Abstract

The parents of children with juvenile idiopathic arthritis have been identified as pivotal facilitators of children's involvement in treatment regimens, including home exercise programmes. As such, parents' perspectives regarding the factors that influence participation in their children's treatment regimens, and in particular home exercise programmes, are addressed in this study. In depth, semi-structured interviews were conducted with 16 families. Rigour was ensured through a rich description of participants, peer and member checking, field journals and audit trails. Four key topics related to the process — the experience of the child's diagnosis, community access and participation, treatment regimens and the impact of these regimens on the parent's roles and relationships — and were addressed. Seven key themes emerged, namely the difficult process of diagnosis, the emotional toll, medications, exercises, life revolves around arthritis, parents' relationship with their child and other family members, and parents and paid work. The implications for clinical practice and future research are discussed.