Study ID | Country | n | Age, Yrs | Sex, M:F | Disease Duration/Time since Diagnosis, Yrs | Scleroderma Type | Data Collection | Conceptual Methodological Framework | Analysis | Main Topic | ||
---|---|---|---|---|---|---|---|---|---|---|---|---|
dcSSc | lcSSc | NS | ||||||||||
Peer-reviewed journal articles | ||||||||||||
Brown, et al10 | UK | 5 | 40–75 | 0:5 | NS | NS | NS | 5 | Face-to-face, semi-structured interviews | Qualitative study | Content and thematic analysis interviews | Group education experiences |
Cinar, et al11 | Turkey | 16 | Mean 48 (SD 12) | 0:16 | Mean 13 (SD 8) | NS | NS | 16 | Face-to-face, semi-structured interviews | Phenomenology | Colaizzi’s phenomenological data analysis | Illness experiences |
Ennis, et al12 | UK | 113 | Median 63 (IQR 14) | 17:96 | Median 12 (IQR 12) | NS | 81 | 32 | Open-ended questionnaire | Qualitative study | Thematic analysis | Telangiectasias and body image dissatisfaction |
Joachim and Acorn13 | Canada | 13 | 46–79 | 0:13 | 2–17 | NS | NS | 13 | Focus groups | Qualitative study | Thematic analysis | Illness experiences |
Kocher, et al14 | Germany, Switzerland | 8 | 44–77 | 3:5 | 0–11 | 4 | 3 | 1 | Face-to-face interviews | Qualitative study | Content and thematic analysis | Skin and mucosa care, general illness experiences |
Mendelson and Poole15 | USA | 11 | 43–84 | 0:11 | Mean 16 (SD 4) | 7 | 1 | 3 | Focus groups | Qualitative study | Immersion and crystallization method of thematic analysis | Illness experience, self-management |
Mendelson, et al16 | USA | 32 | Mean 47 (SD 8) | 6:26 | Mean 10 (SD 9) | 18 | NS | 14 | Structured phone interviews | Qualitative study | Thematic analysis | Work experiences |
Oksel and Gündüzoğlu17 | Turkey | 20 | Mean 51 (SD 10) | 0:20 | Mean 9 (SD 8) | NS | NS | 20 | Face-to-face, semi-structured interviews | Phenomenology | Colaizzi’s phenomenological data analysis | Illness experiences |
Sandqvist, et al18 | Sweden | 17 | 38–62 | 1:16 | 2–22 | 2 | 15 | Focus groups | Qualitative study | Thematic analysis | Work experiences | |
Stamm, et al19† | Austria, Romania, Sweden, Switzerland | 63 | 30–85 | 10:53 | 0.5–48 | 25 | 38 | Focus groups | Qualitative study | “Meaning condensation” thematic analysis | Illness experiences | |
Stamm, et al20† | Romania, Norway, Netherlands, Germany, Sweden, Austria, UK, Switzerland | 63 | 30–85 | 10:53 | 0.5–48 | 25 | 38 | Focus groups | Qualitative study | Content analysis | Functioning in daily life | |
Suarez-Almazor, et al21 | USA | 19 | Median 49 | 6:13 | Mean 8 | 18 | 1 | Face-to-face, semi-structured individual interviews and focus groups | Grounded theory | Thematic analysis | Illness experiences | |
PhD and Masters dissertations | ||||||||||||
Ananian22 | USA | NS | NS | NS | NS | NS | NS | NS | Focus groups | Grounded theory | Social ecological model | Barriers to exercise/ experiences of management of arthritis |
Lees23 | UK | 5 | 35–86 | 0:5 | Mean 14 | NS | NS | 5 | Face-to-face, open-ended interviews | Qualitative study | Thematic analysis | Arthritis self-management program experiences |
Johnson24 | UK | 6 | 40s, 50s, 60s | 1:5 | NS | NS | NS | 5 | Face-to-face, semi-structured interviews | Biographical methods** | Thematic analysis | Work experiences |
Mills25 | Canada | 9 | NS | NS | NS | NS | NS | 9 | Face-to-face, semi-structured interviews | Grounded theory | Thematic analysis | Living well with chronic disease |
Newton26* | Canada | 16 | 28–79 | 0:16 | NS | NS | NS | 16 | Face-to-face, semi-structured interviews | Qualitative study | Thematic analysis | Emotional distress |
Thorne27 | USA | 4 | NS | NS | NS | NS | NS | 4 | Face-to-face, semi-structured interviews | Naturalistic inquiry, phenomenology, grounded theory | Phenomenological and grounded theory analysis | Relationships with health professionals |
Wood28 | USA | 12 | 34–62 | 0:12 | 5–43 | 3 | NS | 9 | Face-to-face, semi-structured interviews | Grounded theory | Thematic analysis | Facial changes |
Conference abstracts | ||||||||||||
Decuman, et al29 | Belgium | 14 | NS | NS | NS | NS | NS | 14 | Semi-structured interviews | Qualitative study | NS | Work experiences |
Mendelson, et al30 | USA | 25 | Mean 54 | 2:23 | Mean 12 | NS | NS | 25 | Semi-structured phone interviews | Qualitative study | Thematic synthesis | Leisure activities experiences |
Mittoo 1, et al31‡ | USA, Canada | NS | NS | NS | NS | NS | NS | NS | Focus groups | Qualitative study | Thematic analysis | Interstitial lung disease experiences |
Mittoo 2, et al32‡ | Canada | 5 | NS | NS | NS | NS | NS | 5 | Focus groups | Qualitative study | Thematic analysis | Interstitial lung disease experiences |
Mouthon, et al33 | France | 25 | NS | NS | NS | NS | NS | 25 | Semi-structured interviews, life story interviews, focus groups, patient observations | Qualitative study | NS | Illness and disease management experiences |
Poole, et al34 | USA | 10 | Mean 45 | 10:0 | 4 | NS | NS | NS | Phone interviews | Qualitative study | Content analysis | Experience of being a father |
Stamm, et al35 | Austria | 15 | Mean 46 | 7:8 | NS | NS | NS | 15 | Biographic narrative interviews | Qualitative study | Narrative biographic method | Illness experience |
↵* Same study published as a journal article in 2012.
↵† Same scleroderma subjects in both journal articles.
↵‡ Mittoo 2, et al may be a study that forms a part of Mittoo 1, et al.
↵** Biographical methods use life histories as a method of social research. dcSSc: diffuse cutaneous systemic sclerosis; lcSSc: limited cutaneous systemic sclerosis; NS: not stated; IQR: interquartile range.