Views of female genital mutilation survivors, men and health-care professionals on timing of deinfibulation surgery and NHS service provision: qualitative FGM Sister Study

Background: Female genital mutilation is an important UK healthcare challenge. There are no health benefits and it is associated with lifelong physical, psychological and sexual impacts. The annual cost to the NHS to care for survivors is £100 million. Deinfibulation may improve health and wellbeing; however, there is no consensus on optimal timing of surgery for type 3 survivors. UK care provision is reportedly suboptimal.

Objectives: To explore the views of survivors, men and healthcare professionals on the timing of deinfibulation surgery and NHS service provision.

Methods: Qualitative study informed by the Sound of Silence framework. This framework is useful for researching sensitive issues and the healthcare needs of marginalised populations. 101 interviews with 44 survivors, 13 men, and 44 healthcare professionals. Supplemented with two workshops with affected communities (n=10) and one with stakeholders (n=30). Data were analysed using a hybrid framework method.

Results: There was no clear consensus across groups on the optimal timing of deinfibulation. However, within groups survivors expressed a preference for deinfibulation pre-pregnancy; healthcare professionals preferred antenatal deinfibulation with a caveat that it should be the survivor’s choice. There was no consensus for men. There was agreement that deinfibulation should take place in a hospital setting and be undertaken by a suitable healthcare professional. Decision making around deinfibulation was complex. Deficiencies in professionals’ awareness, knowledge and understanding resulted in impacts on providing appropriate care. Whilst there were examples of good practice and positive care interactions, in general, service provision was opaque and remains sub-optimal with deficiencies most notable in mental health. Deinfibulation reportedly helped to mitigate some of the impacts of FGM. Interactions between survivors and healthcare professionals were disproportionately framed around the law. The way services are planned and provided often silenced the perspectives, and preferences of survivors and their families.

Limitations: Only a minority of the interviews were conducted in languages other than English and recruitment of survivors was predominantly through maternity settings. Meaning that some voices may not have been heard. The sample of men was relatively small, limiting interpretation.

Conclusions: In general, service provision remains sub-optimal and can silence the perspectives and preferences of survivors.. Deinfibulation services need to be widely advertised, offering the procedure in hospitals, using suitable HCPs at a range of time points to facilitate choice. Future services should be developed with survivors to ensure they are clinically and culturally appropriate. Guidelines should be updated to better reflect the needs of survivors and to ensure consistency in service provision..

Future Work: 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 healthcare professionals, and (3) develop, monitor and evaluate clinically and culturally competent female genital mutilation services.
Study Registration: International Standard Registered Clinical/soCial sTudy Number 14710507.

Funding: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment Programme (project number 16/78/04) and will be published in full in XXX Journal; Vol. XX, No. XX.