Table 3.

Characteristics of papers eligible for inclusion in the systematic review and meta-synthesis

Record number	Authors, Year	Country & setting	Research aims	Sample: N, characteristics, gender, age, ethnicity	Data collection method, average interview duration (mins), interviewer	Data analysis
1	An et al., 2014 [20]	Republic of Korea, Korean RP Society	To investigate health behaviours of people with RP, qualitatively exploring reasons for unhealthy diet and physical inactivity	N = 374 (187 RP; 187 matched control), n = 5 RP interviewed, 247 males, xage = 40, Korean	Semi-structured interviews with 5 participants with RP, 120 mins, ND	Possibly inductive thematic analysis; ND
2	Bittner et al., 2010 [12]	USA, Johns Hopkins Wilmer Eye Institute	Understand how people with RP cope with and manage the stress generated from progressive vision loss and fluctuations in vision in daily life and explore preferences for different coping strategies	N = 8 legally blind adult RP (out of 10 invited); 6 Caucasian females, 2 African-American males; x = 49 (27–63) years old	Online focus groups (2, 3, 3 participants), 90 mins, 2 moderators with one experienced, but no previous experience with RP patients	Possibly inductive thematic analysis; ND
3	Falchetti et al., 2016 [21]	Brazil, Dorina Nowill Foundation	To examine the vulnerability perceived by blind consumers in the marketplace	N = 16 (4 females), age range from 15 to 67; n = 1 RP, female, age 50, social worker, married	Semi-structured interview, 55 mins, ND	Interpretative phenomenological analysis (Smith and Osborn, 2007)
4	Fourie, 2007 [22]	Ireland	Self-study to better understand researcher’s own personal identity and attitudes to blindness following a diagnosis of RP, to transform private experience in to public insight and solutions	n = 1, male, 36 at time of diagnosis, academic	Analysis of 12 emails to family, friends and colleagues pertaining to RP and issues around blindness experiences from 3 months prior to 3 months after receiving a long white mobility cane, researcher as participant	Self-study according to guidance by Bullough and Pinnegar (2012)
5	Hayeems et al., 2005 [23]	USA, Baltimore chapter of the Foundation Fighting Blindness and the Wilmer Eye Institute at Johns Hopkins Hospital	To explore the process of adjusting to RP and develop a model for ophthalmologists to consider and lessen patients’ suffering.	n = 43 adults (out of 88 invited); 24 male: 19 female; xage = 48 (SD = 21,79); 93% White, 7% African American	Semi-structured interviews (45 mins), focus groups (2 h), 2 trained moderators	Interview and focus group data combined, and analyzed according to Straus and Corbin (1998)
6	Schakel et al., 2017 [24]	The Netherlands, two large Dutch low vision rehabilitation organizations	To explore the patient perspective of perceived symptoms, causes, consequences, and coping strategies to deal with fatigue in Dutch adults with visual impairment.	n = 16 (out of an initially 21 interested), xage = 51 (+ or - 13); 9 male, 7 female, n = 4 with RP	Semi-structured in-depth interviews, 90 mins, interviewer was a male psychologist	Approach similar to framework method, combining deductive and inductive forms of analysis and a thematic analysis of data
7	Senthil et al., 2017a [25]	Australia, Royal Society for the Blind & Retina Australia	To explore quality of life issues of people with vitreoretinal diseases to develop group-specific item banks.	79 (32 hereditary retinal diseases of which 23 had RP, and 47 acquired retinal diseases), median age 57 (ranging from 44 to 69) for hereditary group, n = 23 with RP	Semi-structured interviews (45 mins), female lead author as interviewer	Phenomenological approach to data analysis
8	Senthil et al., 2017b [7]	Australia, Royal Society for the Blind & Retina Australia	Explore and understand the issues and impact of people with RP on quality of life	n = 23; xage = 56 (range 28–81), 14 females	Semi-structured telephone interviews, female lead author as interviewer	Inductive analysis approach according to Straus and Corbin (1998)
9	Spiegel et al., 2016 [26]	USA	Describe the interplay between the work trajectories and the passing patterns of individuals with degenerative eye conditions in different phases of career and disease progression. Secondly, to describe the career and wellbeing outcomes associated with different work trajectories and with various concealment and passing pathways	n = 36 (28 with RP, 13 female); age range 42–82, n = 28 with RP	Face to face and telephone semi-structured interviews, interviewer was a female sociologist	Grounded theory approach to data analysis
10	Thetford et al., 2011 [27]	United Kingdom, voluntary organizations	To examine the long-term needs of people with sight loss and barriers faced by people living with sight loss in accessing the support they need over time.	N = 36 males, n = 6 with RP, with at least 1 female in her 40s based on reported case study	Face to face individual BNI and semi-structured interviews, 45 mins, ND	Biographical-narrative interpretative method (Wengraf, 2001; 2005) analyzed thematically (Gifford, 1998; Miles and Huberman, 1994)
11	Thurston, 2010 [28]	United Kingdom, Blind and Partially Sighted Society and British Retinitis Pigmentosa Society	To examine counselling experiences of blind and partially sighted adults in four core areas (mood, self-concept, social connectedness, and loss) to identify their needs, enabling recommendations for future policy and practice.	N = 18, ages ranged from 53 to 85, n = 7 with RP (4 females)	Face to face and telephone interviews lasting between 1 h to 90 min, female researcher who became legally blind later in life interviewed participants	Data analyzed using a grounded theory approach informed by Strauss and Corbin (1990)
12	Thurston et al., 2010 [29]	United Kingdom, Blind and Partially Sighted Society and British Retinitis Pigmentosa Society	To explore the emotional impact of sight loss in mood, self-concept, social connectedness, and loss	N = 18, ages ranged from 53 to 85, n = 7 with RP (4 females)	Face to face and telephone interviews lasting between 1 h to 90 min, female researcher who was legally blind later in life interviewed participants	Data analyzed using a grounded theory approach informed by Strauss and Corbin (1990)

Note: ND No data, RP retinitis pigmentosa, N total sample size of study, n sample size of participants with RP, x_age mean age, SD standard deviation