Title: Female Genital Mutilation: a qualitative study exploring the views of survivors, male partners and healthcare professionals on the timing of deinfibulation surgery (the FGM Sister Study)
Funder: Department of Health and Social Care

Abstract: Overall Aim To explore and understand female genital mutilation/cutting (FGM/C) survivors’, male partners', and healthcare professionals’ (HCP) preferences for the timing of deinfibulation and their views on how NHS services can best be delivered. This aim will be addressed in two work-packages (WP). Work-package 1 Aim: to qualitatively explore the timing preferences for deinfibulation and how NHS FGM/C services can be improved for type 3 FGM/C-survivors (WP1a), male partners (WP1b), and healthcare professionals (HCPs) (WP1c). Design: qualitative Methods: informed by the Silences Framework, semi-structured interviews and/or discussion groups with type 3 FGM/C-survivors (WP1a) (up to a total of 50 participants) and male partners of FGM/C-survivors (WP1b) (up to a total of 10 participants) who live in large ethnically diverse cities in England (Birmingham, London or Manchester) over the age of 18 years who speak English/Somali/Arabic/French will be undertaken. Semi-structured interviews and/or discussion groups (up to a total of 50 participants) with HCPs (WP1c) working in high and low FGM/C prevalence settings and who provide care to FGM/C-survivors (e.g. GPs, practice nurses, midwives, obstetrics and gynaecology clinicians, genitourinary clinicians and sexual health specialists) across the UK will be undertaken. Participants will be identified via pathways including NHS services, third sector organisations, advertising, and via word of mouth. Interviews/ discussions will be supported by interpreters, audio recorded and translated/transcribed. Data analysis will be informed by the Framework Approach. Work-package 2 Aim: to use established techniques to validate the qualitative findings, inform best practice and policy recommendations around the timing of deinfibulation and FGM/C care provision, and identify future actions. Design: local community engagement (WP2a) and national stakeholder (WP2b) workshops Methods: FGM/C experts from Barnardo’s will run two face to face workshops. WP2a will involve a local community engagement event with FGM/C-survivors and WP2b a national stakeholder event with HCPs, third sector organisations, commissioners and policy makers. The workshops will focus on a reflection on the results of the study and provide an opportunity for consensus discussion about the timing of deinfibulation and make recommendations for NHS FGM/C care practice and policy. Participants will be sent a plain English summary of the study results ahead of the events. During each workshop a tailored presentation of the results will be delivered. Participants will be split into smaller facilitated discussion groups to discuss results and identify recommendations. Workshops will be audio-recorded and transcribed. Analysis will be undertaken inductively against the research aims. Duration 24 months: 1st May 2018 to 30th April 2020. Months 1-3 study set up, finalising governance approvals, networking; months 4-15 qualitative data collection, preliminary data analysis (WP1); months 15-16 intensive data analysis (WP1); months 17-18 planning for WP2; months 19-20 community engagement workshop (WP2a) and analysis; months 21-22 national stakeholder workshop (WP2b) and analysis; months 3-24 publication, report writing and dissemination. Expertise Our research team includes inter/nationally recognised FGM/C experts (Alison Byrne, Hibo Wardere), FGM/C specialist clinicians (Alison Byrne, Pallavi Latthe, and Emma Danks), maternal health qualitative methodology (Laura Jones), safeguarding and qualitative methodology (Julie Taylor), public health mixed-methods/grant management (Kate Jolly), third sector FGM expertise (Meg Fassam-Wright) well as a FGM/C-survivor, expert and activist (Hibo Wardere).

Lay abstract: Female genital mutilation, also known as female cutting (we will use the abbreviation FGM/C from now on), is a practice that involves changing, altering or removing part of a girl or woman’s external genitalia without a medical or health reason. There are no health benefits, and some girls and women who undergo FGM/C may experience bleeding, pain, infections, and may have problems getting pregnant and giving birth. Some FGM/C-survivors may also experience mental health problems. Across the world, more than 200 million girls and women are affected by FGM/C, with 137,000 living with the consequences of FGM/C in England and Wales. The World Health Organisation has identified four different types (types 1, 2, 3 and 4) of FGM/C with Type 3 (which involves creating a seal over the vaginal opening) being the most severe. Girls and women who undergo type 3 may need to have a small operation to re-open this seal (known as deinfibulation surgery). At the moment, we know little about what women, their partners, and healthcare professionals (e.g. doctors and midwives) think about when this operation should be done (e.g. before pregnancy or at what stage during pregnancy). We would also like to know more about how NHS services can best support and care for FGM/C-survivors and their families. In order to understand when would be best for women to undergo re-opening surgery and how NHS FGM/C services could be improved we will carry out a programme of research that will include: (1) Discussions with up to 50 women with Type 3 FGM/C who have and have not been re-opened and up to 10 discussions with male partners to understand their views on when the operation should take place and how the NHS can best support their needs. FGM/C-survivors, from three different areas of England, will be identified via their healthcare professional, community organisations, advertising and word of mouth (2) Discussions with up to 50 healthcare professionals (e.g. doctors, midwives, practice nurses) who care for FGM/C-survivors and their families across the UK to explore their views on when re-opening surgery should be undertaken and how FGM/C NHS services could be improved. Healthcare professionals will be identified via professional networks, FGM/C clinics, advertising and word of mouth (3) Running two workshops (one with FGM/C-survivors and one with healthcare professionals and other key stakeholders) where we will discuss our findings from the programme of research, try to reach an overall decision about when re-opening surgery should take place, and make suggestions for how FGM/C-related care can be improved within the NHS Throughout the programme, we will engage with members of FGM/C-affected communities in a large city which has one of the highest rates of FGM/C in England. We have asked a number of FGM/C-survivors, who have and have not had re-opening surgery, to form a group to support the research team. This group, which will be led by a FGM/C-survivor and campaigner, will meet with the research team regularly to ensure that the research is appropriate and sensitive to the needs of FGM/C-affected communities. With the help of the FGM/C-survivor group we plan to share the results of the research with FGM/C-affected communities, healthcare professionals, researchers, policy makers and other groups involved in the delivery of FGM/C-related services by giving presentations, running information events, writing reports and research articles.

Research activity codes: 1.2 PSYCHOLOGICAL AND SOCIOECONOMIC PROCESSES;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH