Title: Improving specialist services for women who have experienced Female Genital Mutilation. A sequential mixed methods study to inform service transformation.
Funder: Health Education England

Abstract: Background Female Genital Mutilation (FGM) is when the female genitals are deliberately cut or injured without medical reason, carrying lifelong negative health consequences. Globally, more than 200 million women have suffered FGM, and this is a significant public health concern. An estimated 137,000 FGM survivors live in England and Wales, predominantly from Black Asian and Minority ethnic communities, costing the NHS approximately 100 million annually. Early FGM specialist services adopted a biomedical approach to care, primarily aimed at pregnant women to ensure safe childbirth. Psychological support was rarely integrated into models of care. Where available, it was trauma-focused and often inaccessible to non-English speakers. Recently new clinics for non-pregnant women have been established, with co-located counsellors and health advocates. However, specialist provision varies considerably across the UK and no national standards exist for FGM care. Women attending FGM clinics increasingly seek information about sexual function, bodily integrity, and reconstruction surgery but these topics rarely feature in UK-specific research. Surgery to restore original genital appearance does not exist in the UK but is available in other countries within holistic models integrating psychosexual assessment and therapies. There is little evidence to underpin optimal FGM specialist care - service configuration, content of consultations, how women's needs are assessed, and what women and their partners want from services. Research Question Are specialist services for women who have experienced Female Genital Mutilation (and their partners) meeting their needs? AimsTo: - (1) map the configuration and content of FGM specialist services in the UK. (2) explore women's and their partner's expectations and experiences of specialist care. (3) identify information and treatment needs and make recommendations for theoretically-informed models of care. Patient and Public InvolvementFGM survivors have said this research is important and will be involved throughout the study. Two PPI groups helped plan the project: - FGM survivors. Health Advocates (women from FGM-practising communities working in healthcare).A group for partners of FGM survivors will be established if funding is successful. Project Plan This is a sequential mixed method study. Phase 1 -h; Identifying the evidence base. Undertake a comprehensive scoping review; Co-design questionnaires and topic guides with PPI members and expert advisory groups; Complete research protocol. Phase 2 -h; Mapping FGM specialist service provision. Survey and documentary analysis of UK FGM clinics and three purposively sampled European clinics. Semi-structured interviews with lead clinicians to follow up questionnaire responses. Phase 3 -h; Prospective Longitudinal study. Qualitative semi-structured interviews with 20 FGM survivors at two time points along the patient journey (within two weeks of initial appointment, and 3 months later); and interviews with 5 partners of FGM survivors. Phase 4 -h; Data analysis and synthesis of findings to identify new information and treatment interventions and make recommendations for service configuration and provision.DisseminationRecommendations will be published in academic and practice-facing journals; shared through presentations, public events, social media, with study participants, policymakers and FGM specialists through professional networks. PPI members will co-design outputs and advise how findings are shared with FGM-practising communities.

Lay abstract: Background Female Genital Mutilation (FGM) is when the female genitals are cut or injured for no medical reason. This is usually carried out on girls without their consent. Worldwide more than 200 million women have had FGM. Around 137,000 women and girls with FGM, mainly from Black, Asian and Minority ethnic communities, live in England and Wales. FGM often causes lifelong health problems which costs the NHS approximately 100 million every year. Women who have had FGM usually do not talk about this sensitive subject and rarely attend NHS specialist clinics. In the past, women with FGM usually attended an FGM clinic during pregnancy, with care concentrated on the woman's physical problems. The woman's mental health was rarely mentioned and, if counselling was offered, it was often only for English speakers. Counselling usually focused on the trauma of FGM itself rather than treating the woman as a whole. More and more often women with FGM ask for information about their body and how it functions. They want to know how FGM affects their sexual relationships, and they want their partners included in discussions. Women also ask about reconstruction surgery. This surgery can restore the genitals to their original appearance and is offered in several European clinics but is not available in the UK. FGM specialist services in the UK are all quite different. Some have community workers and counsellors working in the clinics. Some only treat pregnant women. Some are located in the community rather than in hospital and some are led by midwives not doctors. There are no national standards to make sure that clinics all provide good quality care and few studies have asked women what they want and whether the care could be improved. Research Aims This study aims to: - (1) find out in detail what information and treatments specialist FGM services provide in the UK and compare these with what is offered in Europe. (2) talk to women and their partners after they attend a specialist appointment to find out what they thought about their care and how it could be improved. (3) use the information gained to improve the care women receive in specialist FGM clinics. How will patients and the public help guide the research?Women with FGM have told me this research is important. They have helped plan the project and will advise me throughout the study. I have established two patient and public advisory groups: - 1) Women who have FGM. 2) health advocates (women from FGM-practicing communities working in healthcare).If funding is successful, I will also set up another group with the partners of women who have had FGM. What will this research involve?Part one I will review existing research and develop my study plan with help from my patient and public groups. Part two I will use questionnaires to survey all nineteen FGM clinics in the UK, and three clinics in Europe. I will then interview professionals from these clinics to better understand the care they provide. Part three I will interview twenty women when they attend an FGM clinic and then again 3 months later. I will also interview partners of five women. Part four The evidence will be used to identify any changes needed to services and make recommendations to improve specialist care. How will the findings be shared?Patient and Public groups will advise how findings are shared with study participants and FGM-practicing community members. I will publish findings in research journals; share them through presentations, public events, social media, and with other healthcare professionals and groups involved in making policies and guidelines.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: RENAL AND UROGENITAL;MENTAL HEALTH