| | Author | Study design | Number of participants included | Themes | Disruption to daily life | Communication | Impact of diagnosis | Preferences for care | Stigma |
| General population | Blasiole et al., 2006 | Semistructured interview | 342 | | | ✓ | | ✓ | Bova et al., 2008 | Semistructured interviews | 39 | ✓ | | | | | Brunings et al., 2013 | Semistructured focus group interviews | 44 | | ✓ | | ✓ | | Butt et al., 2008 | Interviews and daily think-aloud recordings | 26 | | | | | ✓ | Conrad et al., 2006 | Semistructured interviews | 70 | ✓ | | ✓ | | ✓ | Dudley et al., 2007 | In-depth interviews | 8 | ✓ | | | | | Faye and Irurita, 2003 | Semistructured interviews | 24 | | | | | ✓ | Fry and Bates, 2012 | Semistructured interviews | 15 | ✓ | ✓ | ✓ | | ✓ | Glacken et al., 2003 | In-depth interviews | 28 | ✓ | | | | | Glacken et al., 2001 | Descriptive exploratory design | 9 | ✓ | | ✓ | | | Groessl et al., 2008 | Semistructured interviews | 22 | ✓ | | ✓ | | | Grundy and Beeching, 2004 | Semistructured interviews | 8 | | | | | ✓ | Harris, 2010 | Phenomenological research design | 40 | ✓ | | | | | Harris, 2005 | Not reported | 20 | | | ✓ | ✓ | ✓ | Harris, 2009 | Semistructured interviews | 40 | | ✓ | ✓ | | | Hepworth and Krug, 1999 | Semistructured interviews | 66 | | ✓ | ✓ | | | Hill et al., 2015 | Unstructured interviews | 23 | ✓ | ✓ | ✓ | ✓ | ✓ | Janke et al., 2008 | Focus groups | 40 | | | | | ✓ | Jiwani et al., 2013 | Semistructured interviews | 10 | ✓ | | ✓ | ✓ | | Kinder, 2009 | Interviews using open-ended questions | 8 | | | ✓ | | | Le Talec, 2013 | Semistructured, open-ended interviews | 31 | | | ✓ | | | MacNeil, 2012 | Semistructured, open-ended interviews | 9 | | | ✓ | | | McCreaddie et al., 2011 | Semistructured interviews | 16 | ✓ | | | ✓ | ✓ | Moore et al., 2009 | Written questionnaire with open ended questions | 39 | | ✓ | ✓ | | ✓ | North et al., 2014 | Semistructured focus group interviews | 48 | | ✓ | | ✓ | ✓ | Olsen et al., 2013 | Semistructured, open-ended interviews | 109 | | | ✓ | | | Olsen et al., 2009 | Semistructured, open-ended interviews | 109 | ✓ | | | | | Owen, 2008 | In-depth, open-ended interviews | 6 | | | | | ✓ | Paterson et al., 2006 | “Think aloud” approach during a face-to-face interview | 33 | | ✓ | | ✓ | | Sgorbini et al., 2009 | Semistructured, open-ended interview | 5 | | | ✓ | ✓ | ✓ | Sinclair et al., 2011 | Semi-structured open-ended interview | 13 | | | ✓ | | | Stewart et al., 2012 | Semistructured, open-ended interviews | 13 | | ✓ | | ✓ | ✓ | Stoller et al., 2009 | Semi-structured, open-ended interviews | 42 | ✓ | | | | | Sutton and Treloar, 2007 | Semistructured, open-ended interviews | 36 | | | ✓ | | ✓ | Temple-Smith et al., 2004 | Open-ended interview | 32 | | ✓ | | ✓ | ✓ | Treloar et al., 2010 | Open-ended interview | 24 | | ✓ | | | | Treloar and Hopwood, 2008 | Open-ended interview | 20 | | ✓ | | | | Treloar and Hopwood, 2004 | Semistructured, open-ended interviews | 19 | | ✓ | | | |
| Injection drug users | Contreras and Jason, 2013 | Semistructured interviews | 4 | ✓ | | ✓ | | | Copeland, 2004 | Semistructured interviews, conducted in groups | | | ✓ | | | | Crockett and Gifford, 2004 | Semistructured interviews | 25 | ✓ | ✓ | ✓ | ✓ | ✓ | Habib and Adorjany, 2003 | Self-reported questionnaire with open- and closed-ended questions | 274 | | ✓ | | ✓ | ✓ | Olsen et al., 2012 | Semistructured, open-ended interviews | 83 | | | ✓ | | | Tompkins et al., 2005 | In-depth, open-ended interviews | 17 | | ✓ | ✓ | | | Wright et al., 2005 | In-depth interviews | 17 | ✓ | | | | |
| Other | Dunne and Quayle, 2001 | Semistructured focus groups | 32 | ✓ | | ✓ | | |
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