Experiences of Children with juvenile idiopathic arthritis with stigma and misunderstanding while preserving their social identity

Abstract

Summary Titel: Experiences of Children with juvenile idiopathic arthritis with stigma and misunderstanding while preserving their social identity Rationale: children with JIA are faced with stigma and misunderstanding. Stigmatic behaviour of healthy peers might negatively influence their social identity. Currently there is no research available on this subject. Aim: This study aimed to explore experiences with stigma and misunderstanding of children with JIA form seven till nine years of age, while they are preserving and shaping their social identity. This study might contribute to better alignment of health care and school life for this specific age group Method: We conducted a qualitative study, with thematic analysis based on a grounded theory approach. 12 children with JIA from seven, eight and nine years of age, of which three boys were interviewed at their home. Open interviewing was used. Results Three themes were identified in relation to the experiences with stigma and misunderstanding: ‘confrontation with stigma hurts me deeply’, ‘It’s just misunderstanding- they can’t help that’, ‘no reason to stigmatize- I’ll joke about it before you do’. Two themes related to social identity within a group of healthy peers: ‘I am not sure about my group position- and find a steady position elsewhere’, ‘I am an agent of my own group membership’. And one theme related to the social identity experienced among peers with rheumatic disease: “When I fully fit in: peers with rheumatic disease”. Conclusion Most children with JIA had a positive view on their social identity. Other children experienced stigma, rejection and bullying, which hurt them deeply. Recommendations: Children with JIA suffering from social difficulties need support in developing social skills. It is preferable to organize help within the school. More research on young children is needed to get a complete picture of their social identity and experiences with stigma.