Skip to main content

Table 3 Experiences, subthemes and associated interview excerpts

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

QuotationIllustrative quotesParticipant nr
Subtheme: Understanding
 1There will always be a teacher who responds to me being tired, with the words: “I also get tired, but still got to do stuff.” And then I think, it is just not the same.8
 2Sometimes I couldn’t take a test because I was sick or had to go to the hospital and everyone was like “she can always skip tests and this and that”. They knew I have JIA, but in time they seem to forget, because you can’t see it. So they don’t understand.20
 3My teacher was really... he has a sister who has a rheumatic disease, so he really understood what was going on.3
Subtheme: Support
 4Eventually, I got an extra set of schoolbooks, but I had to pay for everything myself and had to organize it myself. They told me they had no funds. Only after multiple contacts between school and the rehabilitation centre, suddenly things were possible.9
 5They set up a room for me with a couch, when I was tired I could go and lie down for an hour. I didn’t partake in gym class, I only had to go to classes of which the subject came up in my exams. I had permission to work on a laptop, therefore all my books were on the laptop. They offered school transport, but then I had to get up 45 min earlier, so I rejected.15
 6My parents were always there and always accompanying me to the hospital. They support me in everything, school, studying. They make sure everything’s staying on the right track.8
 7My friends especially, they are really worried, like: “you can’t do this, you shouldn’t do that”, which is sweet, but I’m more like, I can decide for myself.18
Subtheme: Impact of JIA on participation in school, sports and part-time employment 
 8I’ve always had less energy, especially last year. Sometimes I’m even unable to do my homework, because I’m too tired after school and all I want to do is sleep. Or when I try to do my homework, I just fall asleep studying.8
 9I started at the highest level, but last year I had to step down, because the high level and the JIA and fatigue just didn’t work.22
 10I played hockey a lot. I played in the preselection team, but then I got JIA and had to stop. During two to 3 years, I could not participate in any sport.9
 11“The friend with whom I worked, knew I had it, so he was very considerate. He lifted the most heavy parts.”
(Working in a garden centre)
 12They arranged a switch with a colleague so I could help with the lessons and feeding in the evening instead of mucking out stables in the morning. My colleagues are my friends so they knew I have JIA and they didn’t mind.
(Working in an equestrian facility)
 13At this moment I’m working with my sister at the cinema and I have told about my JIA. So when I’m not able to do something, they’ll take over.9
Subtheme: Applying for a (part-time) job or further education 
 14They thought I wasn’t up for the job, that I wouldn’t be able to make long hours or stand for a longer period. If that was the case, they couldn’t use me and I just didn’t got the job.11