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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