Table 4 Quotations from the studies to support the themes
Analytical theme/subtheme | Quotations |
|---|---|
1. Symptom experience | |
• Pain | “It was a solid 7, like 24/7, so sometimes it would get up to a 10, like maybe like every other 2 days but that would still happen” (female, 17 years, CRPS) [59] |
• Causes of pain | “I understand what it is and that it makes everything swell up and like hurt but some stuff I don’t know like why it suddenly can just start hurting for no reason” (female, 13 years, JIA) [61] |
• Fatigue | “I think when I’m tired I can feel it (lower back pain) more and I get crankier and I feel like my back hurts “just leave me alone.” When my back injury was really bad I’d only get like a couple hours of sleep and then I’d be tired throughout the day” (female, 15 years, CIPS) [52] |
• Psychological distress | “You get so disappointed, because suddenly you’re better... and then you’re worse again. All the time you’re hoping that you’ll be better… but sometimes you got worse” (participant with JIA) [39] |
2. Disruption and loss | |
• Restricted body | “It’s annoying like just not being able to do things and then having to think ahead about whether I do one thing then I can’t do another thing tomorrow. Not being able to participate in things at school and having to answer people’s questions is also a downside” (female, 16 years, JIA) [46] |
• Loss of social life | “I feel I get left out from my friends and everything because I can’t do as many things as they do so they don’t even ask me if I want to come along” (female, 14 years, JIA) [34] |
• Future uncertainty | “Like me in tall grass, like enemies around me, and… I don’t know where they are, when they’re going to attack” (participant with CIPS) [47] |
• Disbelieved and stigmatised | “My peers thought it was strange that one day you arrive on crutches and the next you can hardly walk… and then you can walk normally… it didn’t make sense to them” (participant with JIA) [39] |
3. Regaining control | |
• Medication and therapies | “I had, like, a lot of pain in the morning, and then after, like, a lot of walking in the morning it sort of went away” (female, 14 years, JIA) [58] |
• Social support | “They (parents) help me to take good care of my arthritis... sometimes I have very bad pains and my parents help me to stand them” (participant with JIA) [40] |
• Adapting behaviours | “I have to watch what I eat or watch what activities I’m doing, planning ahead what I’m going to do for that week so I don’t – see, that’s the thing… I plan ahead more than I really want to” (participant with CIPS) [47] |
• Cognitive strategies | “I prepare myself almost every day to wake up having excruciating pain” (female, JIA) [48] |
• Avoidance pain | “I want to do what normal teenagers do and not be reminded of my illness all the time. It keeps my mind off the pain and makes me forget about medication and physiotherapy every now and then. Also people think I am perfectly healthy when I participate in normal things—and that helps me forget about it” (female, JIA) [43] |