Experiences, perspectives and expectations of adolescents with juvenile idiopathic arthritis regarding future work participation; a qualitative study

Abstract

Background: Having Juvenile idiopathic Arthritis (JIA) has widespread implications for a person's life. Patients have to deal with recurring arthritis, characterized by pain often accompanied by a loss of energy. Since JIA often persists into adulthood, patients with JIA are likely to encounter difficulties in their working life. We expect that the experiences in school life may be comparable to the barriers and opportunities which patients affected by JIA encounter in adult working life. Therefore, the aim of this study was to elicit the experiences during school life and the perspectives and expectations regarding future work participation of adolescents with JIA. Methods: This study used individual, semi-structured interviews and followed a predefined interview guide. Participants between 14 and 18 years of age (n = 22) were purposively selected to achieve a broad range of participant characteristics. Open coding was performed, followed by axial coding and selective coding. Results: Great differences were seen in the support and understanding that adolescents received in dealing with JIA at school, leisure activities and work. Varying approaches were mentioned on how to pursue a desired vocation. Perspectives regarding disclosure varied. Participants wished to be approached like any other healthy adolescent. Expectations regarding work participation were positively expressed. Conclusion: This study showed that participants often disregarded having JIA when making plans for their future career. Facilitating an open discussion about the possible limitations accompanying JIA with educators and employers might prevent overburden and increase the chance of starting a career which would accommodate the patient with JIA in the near and distant future.

Research agenda setting with children with juvenile idiopathic arthritis: Lessons learned

“…They look at their JIA not only as an inhabitant of their body but also as a person who wants to belong and take part in normal everyday life. This may not come as a surprise, as young people with JIA in earlier studies showed that JIA impairs children's capacity for social participation (Tong et al, 2012 ) and triggers fears for the future, feeling unsure of the physical, psychological and social impact of JIA in their lives (Eyckmans et al, 2010 ) including being rejected if they tell others about their JIA (van Gulik et al, 2020 ).…”