FGM Sister Study

The Female Genital Mutilation (FGM) Sister Study, led by Dr Laura Jones, aimed to explore the views of survivors, men and healthcare professionals on the timing of deinfibulation (opening) surgery and NHS service provision.

Why was this 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 did we do: 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.

What did we find: 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.

FGM Sister Study  


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


  • Preferences for deinfibulation (opening) surgery and female genital mutilation service provision: A qualitative study


  • Radio 4 Woman’s hour exclusive interview about the FGM Sister Study


  • Exploring the views of female genital mutilation survivors, their male partners and healthcare professionals on the timing of deinfibulation surgery and NHS FGM care provision (the FGM Sister Study): protocol for a qualitative study



Funded by NIHR

This study was funded by the National Institute for Health Research (NIHR) Health Technology Assessment (project reference 16/78/04). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Contact us

 For all FGM Sister Study enquiries please email Dr Laura Jones