Table 1.

Characteristics of the included studies.

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
Study ID	Country	n	Age, Yrs	Sex, M:F	Disease Duration/Time since Diagnosis, Yrs	dcSSc	lcSSc	NS	Data Collection	Conceptual Methodological Framework	Analysis	Main Topic
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 al^{19^†}	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 al^{20^†}	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
Newton^{26^*}	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 al^{31^‡}	USA, Canada	NS	NS	NS	NS	NS	NS	NS	Focus groups	Qualitative study	Thematic analysis	Interstitial lung disease experiences
Mittoo 2, et al^{32^‡}	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.