Table 1 Characteristics of qualitative studies
Author | Title | Year | Research focus | Recruitment | Sample size | Data Collection Method |
|---|---|---|---|---|---|---|
Bento & Moreira [58] | Quando os olhos não veem o que as mulheres sentem: a dor nas narrativas de mulheres com endometriose | 2018 | Pain | Community - Internet support groups | 20 | Interview |
Boersen et al. [59] | Patients’ perspective on cognitive behavioural therapy after surgical treatment of endometriosis: a qualitative study | 2021 | CBT | Clinical - from a referral centre for endometriosis - | 17, in 5 focus groups | Focus groups |
Bullo & Hearne [60] | Parallel worlds and personified pain: A mixed methods analysis of pain metaphor use by women with endometriosis | 2021 | Language | Community - self-selecting, advert on social media | 21 | Interview |
Clark [61] | Experiences of women with endometriosis: An Interpretative Phenomenological Analysis. | 2012 | General experience | Community - Endometriosis UK support groups, and adverts in local areas | 13 | Interview |
Cole et al. [57] | “The most lonely condition I can imagine”: Psychosocial impacts of endometriosis on women’s identity | 2020 | Identity | Community- online - advertised through charity | 34 | Open written response |
Cox et al. [62] | Focus group study of endometriosis: Struggle, loss and the medical merry-go-round | 2003 | Experiences of endometriosis and laparoscopy | Clinical - patients of specialist unit invited | 61 in 5 focus groups | Focus group, interview, survey |
Denny [63] | Women’s experience of endometriosis | 2004 | Living with endometriosis | Community and clinical - online message board, snowball | 15 | Interview |
Di Biasi [64] | The meaning of endometriosis to females experiencing the disease | 1995 | Living with endometriosis (specifically for nurses) | Community - advertised through charity and support group | 33 | Open written response |
Di-benedetti [65] | Patients’ perspectives of endometriosis related fatigue: qualitative interviews | 2020 | Fatigue | Clinical - medical recruitment company | 22 | Interview |
Drabble et al. [66] | Constellations of pain: a qualitative study of the complexity of women’s endometriosis-related pain | 2021 | Complexity of pain experience | Community - support groups, Facebook, snowball | 20 | Interview |
Eastwood [67] | Endometriosis: Medical Delegitimation and the Reconstruction of Narrative Identity | 2005 | Living with endometriosis – social | Community - advert in newspaper | 35 | Open written response |
Gater et al. [68] | Development and content validation of two new patient-reported outcome measures for endometriosis: the Endometriosis Symptom Diary (ESD) and Endometriosis Impact Scale (EIS) | 2020 | Development of research tools | Clinical - referrals from treating physicians | 45 | Interview |
Guan et al. [69] | The endometriosis daily diary: qualitative research to explore the patient experience of endometriosis and inform the development of a patient-reported outcome (PRO) for endometriosis-related pain | 2022 | Development of research tools | Clinical - recruitment agency - referrals from medical professions | 30 | Interview |
Hållstam et al. [70] | Living with painful endometriosis – A struggle for coherence. A qualitative study | 2018 | Pain | Clinical - pain clinic | 13 | Interview |
Hudson et al. [56] | Endometriosis: improving the wellbeing of couples | 2013 | Experience of partner/couples | Community and Clinical - support groups, hospital clinics, word of mouth | 22 | interview |
Hunting-don & Gilmour [71] | A life shaped by pain: women and endometriosis | 2005 | Living with endometriosis (nursing literature) | Community - support group | 18 | interview |
Jaeger et al. [72] | “A little monster inside me that comes out now and again”: endometriosis and pain in Austria | 2022 | Living with endometriosis, particular focus on pain | Community - outpatient clinic attendees | 10 | interview |
Jones et al. [73] | The impact of endometriosis upon quality of life: a qualitative analysis | 2004 | Living with endometriosis – impact on quality of life | Clinical - online advert, Facebook, snowball | 24 | interview |
Mander-son et al. [74] | Circuit Breaking: Pathways of Treatment Seeking for Women With Endometriosis in Australia | 2008 | Diagnosis | Community - from a larger study, also newspapers and noticeboards and snowball | 40 | interview |
Márki et al. [75] | Challenges of and possible solutions for living with endometriosis: a qualitative study | 2022 | General experience | Clinical - from a larger study | 21 | Focus groups |
Markovic et al. [76] | Endurance and contest: women’s narratives of Endometriosis | 2008 | Illness narratives | Clinical - from a larger study | 30 | interview |
Matias-Gonzales et al. [77] | “Es que tú eres una changa”: stigma experience | 2021 | Stigmatisation/taboo | Community - flyers | 50 (10–12 per focus groups) | Focus groups |
Mellado et al. [78] | Social isolation in women with endometriosis and chronic pelvic pain | 2015 | Social isolation | Clinical - patients at a clinic | 29 | Focus groups |
Moradi et al. [79] | Impact of endometriosis on women’s lives: a qualitative study | 2014 | General experience (across different ages) | Clinical and community - endometriosis centre, also information night, & recommendations from a doctor | 35 | Focus groups |
Olliges et al. [80] | The Physical, Psychological, and Social Day-to-Day Experience of Women Living With Endometriosis Compared to Healthy Age-Matched Controls—A Mixed-Methods Stud | 2021 | Experience across the menstrual cycle | Clinical - outpatient centres | 12 endometri-osis patients, 11 age-matched healthy controls | interview |
Osborne [81] | The effects of symptomatic endometriosis on womanhood | 2008 | Identity/womanhood | Clinical through clinic and outpatients - identified by doctor | 7 (response rate 50%) | interview |
Rea et al. [82] | Living with endometriosis: a phenomenological study | 2020 | General experience | Clinical - identified by doctor/healthcare providers | 25 (data saturation achieved) | interview |
Riazi et al. [53] | Patients’ and physicians’ descriptions of occurrence and diagnosis of endometriosis: a qualitative study from Iran | 2014 | Diagnosis | Clinical - at a hospital | 6 gynaeco-logists, 12 patients | interview |
Rowe et al. [53] | Improving clinical care for women with endometriosis: qualitative analysis of women’s and health professionals’ views | 2021 | Compare women’s perceptions of healthcare with health professionals’ | Community - advertisements on Facebook | 46 women, 13 health profess-ionals | combination of focus group and open written response - questions posted online, recorded, prompts and additional questions |
Silva et al. [83] | Experiences of women regarding their pathways to the diagnosis of endometriosis | 2021 | Diagnosis | Community - recruited online support groups, adverts | 10 | interview |
Varney [84] | Women’s experiences of endometriosis: Qualitative explorations of psychological support, and interactions with healthcare professionals | 2020 | General experience – with focus on support systems | Clinical - identified by healthcare workers | 15 (5 withdrew prior to interviews - reasons given) | interview |
Zale et al. [55] | Shedding light on endometriosis: Patient and provider perspectives on a challenging disease | 2019 | General experience – comparison of healthcare providers and patients | Community - recruitment flyer on social media pages of endo organisation | 4 providers, 12 patients | interview |
Zarbo et al. [28] | Cognitive and Personality Factors Implicated in Pain Experience in Women With Endometriosis: A mixed method study | 2019 | Links between experience of pain and psychological/cognitive factors | Clinical - from larger study | 6 | interview |