{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,4]],"date-time":"2026-07-04T01:29:45Z","timestamp":1783128585721,"version":"3.54.6"},"reference-count":166,"publisher":"National Institute for Health and Care Research","issue":"3","license":[{"start":{"date-parts":[[2023,3,1]],"date-time":"2023-03-01T00:00:00Z","timestamp":1677628800000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000664","name":"Health Technology Assessment programme","doi-asserted-by":"publisher","award":["16\/78\/04"],"award-info":[{"award-number":["16\/78\/04"]}],"id":[{"id":"10.13039\/501100000664","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journalslibrary.nihr.ac.uk"],"crossmark-restriction":false},"short-container-title":["Health Technology Assessment"],"abstract":"<jats:sec id=\"abs1-1\"><jats:title>Background<\/jats:title>\n<jats:p>Female genital mutilation is an important UK health-care challenge. There are no health benefits of female genital mutilation, and it is associated with lifelong physical, psychological and sexual impacts. The annual cost to the NHS to care for survivors is \u00a3100M. Deinfibulation may improve the health and well-being of some women, but there is no consensus on the optimal timing of surgery for type 3 survivors. UK care provision is reportedly suboptimal.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-2\"><jats:title>Objectives<\/jats:title>\n<jats:p>We aimed to explore the views of survivors, men and health-care professionals on the timing of deinfibulation surgery and NHS service provision.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-3\"><jats:title>Methods<\/jats:title>\n<jats:p>This was a qualitative study informed by the Sound of Silence framework. This framework is useful for researching sensitive issues and the health-care needs of marginalised populations. A total of 101 interviews with 44 survivors, 13 men and 44 health-care professionals were conducted, supplemented by two workshops with affected communities (participants, <jats:italic>n<\/jats:italic>\u2009=\u200910) and one workshop with stakeholders (participants, <jats:italic>n<\/jats:italic>\u2009=\u200930). Data were analysed using a hybrid framework method.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-4\"><jats:title>Results<\/jats:title>\n<jats:p>There was no clear consensus between groups on the optimal timing of deinfibulation. However, within groups, survivors expressed a preference for deinfibulation pre pregnancy; health-care professionals preferred antenatal deinfibulation, with the caveat that it should be the survivor\u2019s choice. There was no consensus among men. There was agreement that deinfibulation should take place in a hospital setting and be undertaken by a suitable health-care professional. Decision-making around deinfibulation was complex. Deficiencies in professionals\u2019 awareness, knowledge and understanding resulted in impacts on the provision of appropriate care. Although there were examples of good practice and positive care interactions, in general, service provision was opaque and remains suboptimal, with deficiencies most notable in mental health. Deinfibulation reportedly helps to mitigate some of the impacts of female genital mutilation. Interactions between survivors and health-care professionals were disproportionately framed around the law. The way in which services are planned and provided often silences the perspectives and preferences of survivors and their families.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-5\"><jats:title>Limitations<\/jats:title>\n<jats:p>Only a minority of the interviews were conducted in a language other than English, and the recruitment of survivors was predominantly through maternity settings, which meant that some voices may not have been heard. The sample of men was relatively small, limiting interpretation.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-6\"><jats:title>Conclusions<\/jats:title>\n<jats:p>In general, service provision remains suboptimal and can silence the perspectives and preferences of survivors. Deinfibulation services need to be widely advertised and information should highlight that the procedure will be carried out in hospital by suitable health-care professionals and that a range of time points will be offered to facilitate choice. Future services should be developed with survivors to ensure that they are clinically and culturally appropriate. Guidelines should be updated to better reflect the needs of survivors and to ensure consistency in service provision.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-7\"><jats:title>Future work<\/jats:title>\n<jats:p>Research is needed to (1) map female genital mutilation service provision; (2) develop and test effective education to address deficits in awareness and knowledge for affected communities and health-care professionals; and (3) develop, monitor and evaluate clinically and culturally competent female genital mutilation services.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-8\"><jats:title>Trial registration<\/jats:title>\n<jats:p>Current Controlled Trials ISRCTN14710507.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"abs1-9\"><jats:title>Funding<\/jats:title>\n<jats:p>This project was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment Programme and will be published in full in <jats:italic>Health Technology Assessment<\/jats:italic>; Vol. 27, No. 3. See the NIHR Journals Library website for further project information.<\/jats:p>\n<\/jats:sec>","DOI":"10.3310\/jhwe4771","type":"journal-article","created":{"date-parts":[[2023,3,15]],"date-time":"2023-03-15T16:12:21Z","timestamp":1678896741000},"page":"1-113","update-policy":"https:\/\/doi.org\/10.3310\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":6,"title":["Views of female genital mutilation survivors, men and health-care professionals on timing of deinfibulation surgery and NHS service provision: qualitative FGM Sister Study"],"prefix":"10.3310","volume":"27","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4018-3855","authenticated-orcid":true,"given":"Laura","family":"Jones","sequence":"first","affiliation":[{"name":"Institute of Applied Health Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9166-1650","authenticated-orcid":true,"given":"Emma","family":"Danks","sequence":"additional","affiliation":[{"name":"Institute of Applied Health Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4744-5659","authenticated-orcid":true,"given":"Benjamin","family":"Costello","sequence":"additional","affiliation":[{"name":"Institute of Applied Health Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6224-2115","authenticated-orcid":true,"given":"Kate","family":"Jolly","sequence":"additional","affiliation":[{"name":"Institute of Applied Health Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5223-1789","authenticated-orcid":true,"given":"Fiona","family":"Cross-Sudworth","sequence":"additional","affiliation":[{"name":"Institute of Applied Health Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0529-0409","authenticated-orcid":true,"given":"Pallavi","family":"Latthe","sequence":"additional","affiliation":[{"name":"Birmingham Women\u2019s and Children\u2019s NHS Foundation Trust, Birmingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1864-5291","authenticated-orcid":true,"given":"Meg","family":"Fassam-Wright","sequence":"additional","affiliation":[{"name":"National FGM Centre, Barnardo\u2019s, Barnardo House, Ilford, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2563-5451","authenticated-orcid":true,"given":"Joanne","family":"Clarke","sequence":"additional","affiliation":[{"name":"Institute of Applied Health Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2366-0162","authenticated-orcid":true,"given":"Alison","family":"Byrne","sequence":"additional","affiliation":[{"name":"University Hospitals Birmingham NHS Foundation Trust, Heartlands Hospital, Birmingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7259-0906","authenticated-orcid":true,"given":"Julie","family":"Taylor","sequence":"additional","affiliation":[{"name":"School of Nursing, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"6221","published-online":{"date-parts":[[2023,3]]},"reference":[{"key":"key2023022816310900_ref2-bib2","volume-title":"Female Genital Mutilation","author":"National FGM Centre","year":"2020"},{"key":"key2023022816310900_ref3-bib3","volume-title":"Potential Health Consequences of Female Genital Mutilation","author":"National FGM Centre","year":"2020"},{"key":"key2023022816310900_ref5-bib5","volume-title":"Sexual and Reproductive Health: Classification of Female Genital Mutilation 2007","author":"World Health Organization"},{"key":"key2023022816310900_ref6-bib6","doi-asserted-by":"publisher","first-page":"1835","DOI":"10.1016\/S0140-6736(06)68805-3","article-title":"WHO study group on female genital mutilation and obstetric outcome. 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