Title: Improving care for women and girls who have undergone female genital mutilation (FGM): qualitative evidence synthesis
Funder: Department of Health and Social Care

Abstract: BACKGROUND Female Genital Mutilation (FGM) refers to all procedures that involve the partial or total removal of the external female genitalia or other injury to the female genital organs for non-medical reasons. FGM is associated with significant negative medical, psychological, and sexual consequences. FGM is illegal in the UK. Due to increased migration, it is a growing problem, with over 137,000 women and girls thought to be living with FGM. Costs to the NHS associated with FGM are unknown. In 2014, a National FGM Prevention Programme was initiated and there is a strong policy drive across the NHS to improve the identification and care of women and girls have who undergone FGM. There are currently only 14 specialist FGM clinics in England and Wales, hence many women lack access to appropriate services. Currently, women with FGM are identified primarily in the context of maternity services where care can be highly variable, dependent on the interests of individual staff, and often exclusively medically-focused (rather than addressing other health needs). There is a lack of information on FGM care in non-maternity settings. Evidence indicates that health professionals lack confidence around FGM, and that, even when trained, they do not always follow guidance. Reasons for this are unclear. In addition, research suggests that women/girls experience significant barriers to seeking and receiving care, and are often unhappy with care received. Recent Guidelines propose that NHS care for women/girls who have undergone FGM should comprise a multi-agency approach and should include services that address their multiple and complex health needs. There is a recognised lack of coherent evidence with which to inform service development however, with no intervention studies currently available that could illuminate service design. In order to address this gap and to lay the foundations for future research in this area, we propose to undertake two systematic reviews of relevant qualitative evidence. AIM To synthesise qualitative evidence on the experiences, needs, barriers and facilitators around seeking and providing FGM-related care from the perspectives of: (i) women and girls who have undergone FGM and (ii) health professionals. METHODS A thematic synthesis approach will be adopted. All steps will involve two or more reviewers. A systematic search of published literature will be conducted including 7 databases and hand searching of reference lists. We will also search for relevant grey literature and unpublished research reports using established grey literature databases. We will include papers from high income OECD countries (as these are most relevant to a UK context), with no date or language restrictions. Papers will be critically appraised and data extracted using JBI-QARI tools and NVivo software. Findings will be synthesised using inductive thematic analysis. Confidence in the review findings will be assessed using the CERQUAL approach. The reviews will be conducted sequentially and reported separately following ENTREQ guidelines. However, a discussion section of the final project report will compare, contrast and integrate both sets of review findings to generate recommendations for policy, practice and training. PPI involvement is integral throughout. DISSEMINATION A stakeholder event will inform recommendations which will be used to produce a report, publications and a best practice guide.

Lay abstract: BACKGROUND This project has been developed collaboratively by a team of researchers, community representatives and NHS professionals. It is about improving care for women and girls who have experienced a procedure called Female Genital Mutilation (FGM). FGM involves the cutting and/or stitching together of parts of a woman or girls’ clitoris and/or vaginal area. The cutting can be minor or very severe. FGM can cause many different physical, sexual and mental health problems. FGM is practised by different communities in Africa and the Middle East. Over 137,000 women and girls living in the UK have experienced FGM and numbers are growing (e.g. over 2,600 cases were identified in the 4 months between September 2014 and January 2015). There is no available information on how much FGM-related care costs the NHS each year. FGM is illegal in the UK. Health professionals are required by law to record all cases of FGM and to tell the police if they find FGM in a girl under the age of 18. We know from research evidence that health professionals find it very difficult to talk about FGM, lack confidence in dealing with it, and miss many cases. At the same time, other research shows that women with FGM find it hard to go for help and are often unhappy with the care that they receive. This means that many women do not get the care they need and opportunities to talk about prevention are being missed. At the moment, there are very few specialist services available for women/girls who have undergone FGM. Recent Government guidelines call for more services to be developed and for staff to be trained. There is very little research available that can tell us what the most effective models of care are. In order to develop such models (and staff training programmes), we need to understand the problems, issues and barriers from the point of view of women/girls who have experienced FGM as well as the staff who have to care for them. Qualitative research can help to provide this information. AIM In this project, we aim to find and to summarise (systematically review) all the qualitative research available that can tell us about the needs, views and experiences of FGM care from the perspective of (i) women/girls who have had FGM and (ii) health professionals. WHAT WE WILL DO We will follow clear scientific steps to undertake the two systematic reviews: (i) Systematic literature search to find all the relevant research. We will only include studies from high income OECD countries as these will be most relevant to the UK context; (ii) Careful assessment of the quality of each research paper; (iii) Summarising the research details and identifying the main findings; (iv) Analysing the main findings to identify key themes, including a section that shows how confident we are in these findings; (v) Writing a report that will highlight new insights to help with FGM service development and staff training. The report will include one section for each review as well as a final section where we compare the reviews and make some recommendations. SHARING OUR WORK We will invite many different NHS staff and community representatives to a meeting to discuss our work and to suggest recommendations for policy, practice, training and future research. We will publish the work in professional journals, community newsletters, academic journals and conferences. We will create a best practice guide.

Research activity codes: 7.3 MANAGEMENT AND DECISION MAKING;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: RENAL AND UROGENITAL;REPRODUCTIVE HEALTH AND CHILDBIRTH