Female genital mutilation in the UK- where are we, where do we go next? Involving communities in setting the research agenda

Abstract

BackgroundFemale Genital Mutilation (FGM) is all practices involving cutting, alteration or injury to the female genitalia for non-medical reasons. It is a form of violence against women and children, with no benefits and many harms. In 2014, the UK Government committed to working to eliminate FGM. Steps taken towards this aim included creation of educational and safeguarding resources for professionals, and legislative changes including a mandatory reporting duty for professionals in England and Wales (where if a girl under 18 discloses or is found on examination to have FGM then the professional is mandated to report this to the police), and an FGM Enhanced Dataset applicable to NHS organisations in England requiring the submission of personal data about women and girls who have had FGM to NHS Digital. To date, compliance with dataset returns from primary care services have been low. This report describes using patient and public involvement (PPI) to identify research and service priorities to support communities affected by FGM.MethodsWe held a series of PPI events (4 focus groups, and a multi-agency seminar) in 2015–2016, following the introduction of these legislative changes, speaking to community members, and professionals involved in their care. We asked participants to consider what they identified as research, knowledge and service priorities to support communities affected by FGM.ResultsThe impact of these legislative and reporting requirements on the trust needed for community members to seek to consult health services was identified as important for further research. Priorities for service development were holistic services, that met a woman’s needs throughout her lifecourse. Participants emphasised the importance of understanding how to listen, involve and utilise community voices in developing education for professionals, designing services, and developing policy.ConclusionsThere was a desire for change to develop from within affected communities; any learning and resources need to be co-created and constructed in such a way that they can be effectively shared between women, communities, and professionals. Questions remain about how to define community consultation, how to recognise when it was adequate, and how to hear beyond community activists to hear a wider range of voices.

Seeking culturally safe care: a qualitative systematic review of the healthcare experiences of women and girls who have undergone female genital mutilation/cutting

“…Further mapping and evaluation of models of care would be beneficial to understand better their differential impact on accessibility, outcomes, cost and patient satisfaction. Finally, there was no research that specifically explored women’s/girls’ experiences of healthcare professional’s involvement in the implementation of legal safeguarding or prevention interventions, which in some countries (such as the UK) are inserting new complexities into the patient–professional relationship and reportedly undermining trust 32 33 195–197…”

Understanding the Experiences and Needs of Migrant Women Affected by Female Genital Mutilation Using Maternity Services in Australia

“…For example, many health professionals lack clinical skills and knowledge about the law in relation to FGM [17,18]. Health professionals have also been found to have a poor understanding of the cultural background of women affected by FGM and find communication challenging [19,20]. These issues, combined with inadequate support services, such as interpreting and counselling services, mean that many women may face difficulties expressing their needs [21].…”

Conversations about FGM in primary care: a realist review on how, why and under what circumstances FGM is discussed in general practice consultations

“…This synthesis was developed following a patient and public involvement research priority setting project, in which SD was involved in developing and reporting, which identified this question as a research priority. 16 The findings of this synthesis were reviewed with stakeholders and PPI collaborators who commented on resonance and relevance.…”

“…This was identified as an important area for exploration in a research user consultation where community members and professionals were asked what they identified as FGM research and service priorities. 16 General practice care in England is typically delivered by primary care health teams, including GPs, practice nurses, advanced nurse practitioners (ANPs) and, increasingly, pharmacists and paramedics who are based in GP practices located within community settings. Primary care in England holds patients and families in holistic and longitudinal care (and care records) and has a gatekeeper role.…”