Ungdom med barneleddgikts hverdagslivserfaringer. Forhandlinger om deltagelse og normalitet

Abstract

Juvenile Idiopathic Arthritis (JIA) is one of the most common chronic illnesses in childhood. Typical symptoms are swelling, pain, and stiffness in joints, which can result in challenges in completing daily activities and participating in everyday life. The aim of this article is to provide knowledge regarding how adolescents with JIA experience their own daily life. Eight adolescents, aged 12-16, with JIA participated in this qualitative study. The data collection was conducted using in-depth interviews inspired by life mode interviews. The study design is explorative and the concepts of participation and normality form a focal point in the analyses. We find that home, school, leisure pursuits, clinic appointments, and rehabilitation in a warm climate appear to be important arenas in the adolescents’ everyday lives. The results demonstrate that generally their everyday experiences concern negotiations of participation and normality in relation to themselves and their peers, such as friends, schoolmates and other adolescents with JIA, and in relation to the environments. The adolescents’ negotiations of participation involve both experiences of being emancipated and constrained. Indeed, the results unfold how participation intersect with norms of normality within the different arenas of everyday life among the adolescents with JIA.