Experiences of participation in activities among girls with juvenile idiopathic arthritis: A qualitative study.
Johanna Kembe, Malin Regardt
PMID 35403449WHAT IT FOUND
Eight girls with juvenile idiopathic arthritis said pain, fatigue, stiffness and school absences pushed them out of activities, while meaningful routines, adapted tasks, technical aids and supportive friends or teachers helped them feel able to stay involved.
Key findings
01Girls described pain, fatigue, stiffness and reduced energy as leading to school absence and difficulty with social and structured activities after school.
02Girls described technical aids as increasing participation in social activities, at home and at school.
03Girls described participation as increasing when family, friends and teachers understood the disease, and as decreasing when they were treated with ignorance.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
Only eight girls were interviewed, so the findings cannot be generalised to boys or to all children with JIA. Participants were selected because they had moderate to severe quality of life impact, so children with milder impact were not represented. The first author had several years of experience working with children with JIA, which could have influenced the interviews and analysis. A guardian was present in three interviews, which may have affected what the girls said. The study reports experiences and themes, not measured effects of treatments or strategies.
Declared interests
The authors declared no potential conflicts of interest. The work was supported by the Swedish Pediatric Rheumatology Registry and Karolinska University hospital for paid work time corresponding to 5 weeks.
The easy way to misread this
Do not read the strategies described here as tested treatments that improve participation. The study interviewed eight girls and reports their experiences, not measured effects, and only girls were included.