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 |