Female Genital Mutilation (FGM) Sister Study

Why this was an important study

Female genital mutilation is an important UK healthcare 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 £100M. 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.

What we did

This was a qualitative study informed by the Sound of Silence framework. This framework is useful for researching sensitive issues and the healthcare needs of seldom heard populations. A total of 101 interviews with 44 survivors, 13 men and 44 healthcare professionals were conducted, supplemented by two workshops with affected communities (participants, n = 10) and one workshop with stakeholders (participants, n = 30). Data were analysed using a hybrid framework method.

Our findings

There was no clear consensus between groups on the optimal timing of deinfibulation. However, within groups, survivors expressed a preference for deinfibulation pre pregnancy; healthcare professionals preferred antenatal deinfibulation, with the caveat that it should be the survivor’s 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 healthcare professional. Decision-making around deinfibulation was complex. Deficiencies in professionals’ 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 healthcare 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.

What do we need to do next?

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.