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Table 2 The characteristics of the included studies in the review, presented in order of year they were published

From: Adolescents’ experiences of fluctuating pain in musculoskeletal disorders: a qualitative systematic review and thematic synthesis

Author (year) Country Participants Age (years) Gender Data collection Data analysis Principal research topic Discussed pain fluctuations Problems with extracting data
  1. Beales et al. (1983) [31] UK JIA n = 75 7–17 48 female
27 male
Face to face
interview
Children and adolescents with JIA beliefs about the physical nature of their illness and treatment Yes No
  2. Beales et al. (1983) [32] UK JIA n = 39 6–17 - female
- male
Face to face interview The meaning children and adolescents with JIA attribute to joint sensations and pain No No
  3. Berry et al. (1993) [33] US JIA n = 54 6–17 (M = 12 years) 40 female
14 male
Face to face
interview
Content analysis Children and adolescents with JIA understanding and conceptualisation of illness. No No
  4. Woodgate (1998) [34] Canada JIA n = 4
Other: diabetes n = 11, asthma n = 5, Crohn’s disease n = 2, ulcerative colitis n = 1
Total n = 23
13–16* 12 female*
11 male*
Face to face
interview
Grounded theory analysis Adolescents’ descriptions of chronic illness experiences Yes No
  5. Barlow el al. (1999) [35] UK JIA n = 10
Other: health professionals n = 7, parents n = 13
Total n = 30
8–15 5 female
5 male
Focus group Thematic analysis The needs and preferences of children and adolescents with JIA, and their perspectives on psychoeducational interventions No No
  6. Sällfors et al. (2001) [36] Sweden JIA n = 22 6–17 (median = 15 years) 16 Female
6 male
Face to face interview Grounded theory How children and adolescents with JIA cope with chronic pain in daily life Yes No
  7. Britton & Moore (2002) [37] UK JIA n = 9
Other: parents n = −, siblings n = −
Total n = −
7–13 years 9 Female
0 male
Questionnaire, face to face interviews, written diary, video diary Grounded theory analysis The experiences of families of young people with JIA Yes No
  8. Britton & Moore (2002) [38] UK JIA n = 9
Other: parents n = −, siblings n = −
Total n = −
7–13 years 9 Female
0 male
Questionnaire, face to face interviews, written diary, video diary Grounded theory analysis The families’ perspectives about daily exercises, splinting and medication in JIA Yes No
  9. Sällfors et al. (2002) [39] Sweden JIA n = 22 6–17 (male median age = 11 years, female median age = 16 years) 16 Female
6 male
Face to face interview Grounded theory analysis Life situation and psychosocial processes of living with chronic pain in JIA Yes No
  10. Kyngäs (2004) [40] Finland JIA n = 6
Other: diabetes n = 14, asthma n = 12, epilepsy n = 8
Total n = 40
13–17* 26 Female*
14 male*
Face to face interview Content analysis Support network of adolescents with a chronic disease Yes Yes- unclear which themes derived from young people with JIA
  11. Batthish et al. (2005) [41] Canada JIA n = 14
Other: parents n = 11,
Total n = 25
6–18 (M = 12 years) 8 Female
6 male
Face to face interview Content analysis Perceptions of active disease among children and adolescents with SO-JIA and their parents No No
  12. Pelaez-Ballestas et al. (2016) [42] Mexico JIA n = 6
Other: parents n = 16,
Total n = 22
M = 13 years 4 Female
2 male
Face to face interview Interpretative grounded theory methodology and explanatory models Experiencing JIA within a specific cultural context No No
  13. (Guell, 2007) [43] Germany and UK JIA n = 4
Other: parents n = −, siblings n = −, health professionals n = −
Total n = −
7–16 3 Female
1 male
Face to face interview, observation Ethnographic approach The everyday life and coping of children and adolescents with JIA Yes No
  14. Stinson et al. (2007) [44] UK JIA n = 36 12–20 (M = 15 years) 24 Female
12 male
Face to face interview and focus group Thematic analysis Self-management needs of adolescents with JIA No No
  15. Fuchs et al. (2008) [45] The Netherlands JIA n = 1 18 1 Female Face to face interview The self-confrontation method The personal experience and feelings of an adolescent with JIA No No
  16. De Monte et al. (2009) [46] Australia JIA n = 13 8–16 (M = 11 years) 11 Female
2 male
Face to face interview Thematic analysis Children and adolescents with JIA perceptions about their participation in home exercise programmes No No
  17. Meldrum et al. (2009) [47] US CRPS n = 5
Fibromyalgia n = 5
Other: headaches n = 31, functional neurovisceral pain disorder n = 20, myofascial pain n = 18
(25 young people reported more than one type of pain).
Total n = 53
10–17* 36 Female*
17 male*
Face to face interview Grounded theory and narrative analysis The experiences and impact of chronic or recurrent pain on children and adolescents Yes Yes- unclear which themes derived from young people with CRPS/ fibromyalgia. However, authors reported no significant differences between responses based on the type of pain experienced
  18. Sällfors (2009) [48] Sweden JIA n = 6 14–17 6 Female
0 male
Face to face interview written diary Grounded theory Female adolescents’ daily living with chronic arthritis Yes No
  19. Secor-Turner et al. (2011) [49] US JIA n = 5
Other: young adults with JIA n = 5
Total n = 10
14–21 (M = 16 years) 3 Female
2 male
Face to face interview and focus group Content analysis Challenges that adolescents experience while living with JIA from the perspective of youth and young adults with JIA. Yes No
  20. Gorodzinsky et al. (2013) [50] US Chronic musculoskeletal pain n = 2
Other: functional abdominal pain n = 4, gastritis n = 1, post-concussive syndrome n = 1, chronic migraines n = 1, Siblings n = 9
Total n = 17
12–18 years (M = 15 years) 7 Female
1 male
Face to face or telephone interview Delphi coding procedure Experiences of children and adolescents with chronic pain and their siblings, and how pain influences family dynamics No Yes- unclear which themes derived from young people with chronic musculoskeletal pain
  21. Gray et al. (2013) [51] UK JIA n = 19
Other:
Other arthritis n = 2
Total n = 21
11–19* 17 Female*
4 male*
Blogs Thematic analysis and corpus linguistics The relationship between identity and medication use amongst adolescents with arthritis, and the role of pharmacy in delivering services to this group. Yes No
  22. Jacobson et al. (2013) [52] US JIA n = 18,
Fibromyalgia n = 1,
CRPS n = 1
Other: migraines n = 4, chronic headaches n = 3, abdominal pain n = 2, chronic foot pain n = 1, progressive pseudorheumatoid chondrodysplasia n = 1, chronic lower back pain n = 1
Total n = 34
8–18 (M = 14 years)* 28 Female*
6 male*
Face to face interview Thematic and content analyses The performance and content validity of PROMIS paediatric measures among children and adolescents with chronic pain conditions Yes Yes- unclear which themes derived from young people with JIA/ CRPS/
Fibromyalgia. However, authors reported no evidence of differences across diagnostic groups.
  23. Tong et al. (2013) [53] Australia JIA n = 13
Other: parents n = 37
Total n = 50
14–19 9 Female
4 male
Face to face or telephone interview Thematic analysis Parental and adolescent perspectives on paediatric rheumatology care and service delivery Yes No
  24. Guzman et al. (2014) [54] Canada JIA n = 9
Other: parents n = 23, health professionals n = 17
Total n = 49
16–23 7 Female
2 male
Face to face interview and focus group Content analysis Identifying clinical features most important for adolescents, parents and clinicians in the course of JIA No No
  25. Cartwright et al. (2015) [55] UK JIA n = 10 13–17 7 Female
3 male
Face to face interview Interpretative phenomenological analysis Adolescents’ experiences of living with JIA and the process of adjustment No No
  26. Condon et al. (2015) [56] Ireland JIA n = 26
Other: parents n = −
Total n = −
3–18 (M = 11 years) 19 Female
7 male
Face to face interview Qualitative descriptive approach self-management needs and coping activities of children and adolescents with JIA and their parents Yes No
  27. Jacobson et al. (2016) [57] US JIA n = 11,
Fibromyalgia n = 4
Other: migraine n = 5, sickle cell disease n = 8, parents n = 14
Total n = 42
8–17 18 Female
10 male
Face to face interview, focus group Content analysis The conceptual scope and content validity of the PROMIS pain domain framework among children with chronic pain conditions No No
  28. Race et al. (2016) [58] Canada JIA n = 23
Other: parents n = 29
Total n = 37
8–16 (M = 12 years) 15 Female
8 male
Face to face interview Framework Analysis Perspectives of children and adolescents with JIA and their parents about the barriers and facilitators to participation in physical activity Yes No
  29. Suder (2016) [59] US CRPS n = 2
Amplified pain syndrome n = 1
Other: headaches n = 6, migraines n = 5, lower back pain n = 2, abdominal pain n = 2, wrist pain n = 1, ankle pain n = 1, chronic leg pain n = 1
(8 young people reported more than one type of pain).
Total n = 10
14–17 3 Female
0 male
Face to face interview, visual depictions, researcher journaling Thematic analysis The lived experience of adolescents who live with chronic pain. Yes No
  30. Sørensen et al. (2017) [60] Norway CRPS n = 4,
Extreme muscle pain n = 2
Total n = 6
12–19 4 Female
2 male
Face to face interview Hermeneutic analysis Adolescents’ experiences of complex persistent pain and its impact on everyday life Yes No
  31. Ghio et al. (2018) [61] UK JIA n = 20 11–16 13 Female
7 male
Face to face interview Framework and content analysis The suitability and validity of an illness questionnaire for use with adolescents with JIA Yes No
  32. Modica et al. (2018) [62] US JIA n = 25
Other: parents n = 7
Total n = 32
13–20 - Female
- male
Social media post Sociolinguistics and
semiotics
Experience of adolescents with systemic JIA and their parents based on their social media posts No No
  1. JIA juvenile idiopathic arthritis
  2. CRPS complex regional pain syndrome
  3. - = unknown
  4. * = did not specify age and sex of participants with JIA or CIPS