What does it mean to grow up with juvenile idiopathic arthritis? A qualitative study on the perspectives of patients

Abstract

We investigated what it means to patients with juvenile idiopathic arthritis (JIA) to grow up with this disease. A qualitative study was conducted using semi-structured, in-depth interviews of 11 patients with JIA, aged 18-30 years. Interviews were tape recorded and transcribed verbatim. Data were analysed using procedures inherent to the grounded theory approach. Five main themes emerged: physical impact, medication, relationships and family, friends, and perceptions of their future. The physical impact of JIA involved functional limitations, pain, and fatigue. Taking medication properly was difficult; side effects were seen as a problem. With regard to relationships and family, JIA affected the subjects in their roles as family members and affected intimate relationships, pregnancy, and raising children. Indeed, the majority of the patients were afraid to become pregnant or to have children. Most patients found friends who understand their situation and who are a big support. Some patients were afraid of what the future would bring. A better understanding of the psychosocial needs of adolescents with JIA and getting insight into what it means to grow up with this condition will assist healthcare professionals to target interventions that are timely and effective in transitional care to adulthood.