We were overwhelmed by the passion and energy that participants brought to these PPI events. The willingness to speak out with courage and commitment was noteworthy.
Many felt their culture was stigmatised by the association with FGM, and expressed a wish for a more balanced representation of their cultures and communities, including the positive values and traditions associated with the transition to womanhood. FGM is but one part of women’s lifecourse, and only one thing of many that had happened to them. Women told us that they did not want to feel defined by their FGM, nor be denied the opportunity to consider other health and social issues which may be more important to them.
What should be researched?
Understanding differences
Different generations within diasporan communities may have different health and educational needs with regard to FGM. More understanding of these differences is vital. This included understanding women’s needs related to FGM at different life stages, but also that the needs of those born in the UK may differ from those who had travelled to live in the UK after birth. There is a need to understand diversity both within and between communities and the different information and support needs they may have.
How much, where and when?
The need to know more about how much/whether/where/how and why FGM was being performed in the UK now, or by UK residents, was identified as an important knowledge gap that could help inform both service design, preventative work and resource development.
Cultural authenticity
Women and professionals discussed that FGM affects a wide range of different communities, with different traditions, FGM practices, and potentially different on-going health consequences. Learning from other groups’ traditions and experiences was identified as necessary and useful, but how and whether resources and stories can or should be shared between cultures was identified as an uncertainty. Having information and resources relevant to all cultures and covering all types of FGM was felt to be a priority, but whether each community needed a personalised resource, or whether unified resources shared across communities was felt to be unknown.
Legal changes
The potential impact of the UK legislation, specifically the 2015 changes including mandatory reporting, the FGM enhanced dataset, and the introduction of the offence of failure to protect a child from FGM, was a key area identified that was felt to warrant further exploration. We heard that it would be important to understand what community members know and understand about the legislation. Questions were raised about what community consultation is for, what makes it adequate and how it is fed back to communities, including understanding how community voices were used in policy development. Whether the laws would alter community or community members’ behaviour, their perception of the accessibility of health services, or influence how professionals interacted with families from affected communities was identified as an important area for further research.
What services do women want?
Women asked us to consider their health needs throughout their life course, stretching from puberty, to their needs before and during marriage, pregnancy and childbirth, and through to the menopause. They noted that antenatal care is an important time to engage with women about FGM, but that they wanted services that looked after women both through the antenatal period and beyond. They asked for services to not be solely focussed on sexual and reproductive health.
While the term “mental health” was identified as potentially difficult by some community members, describing a perception of stigma against mental illness, (we were told that in many cultures the word “mental” is heavily aligned with “being mad” in common parlance), participants requested holistic service provision, in which both physical and emotional or psychological needs were able to be met. The impact of FGM on both women’s and men’s psycho-sexual function was raised as important to learn more about, including how to support couples affected by FGM. The need for safe spaces to discuss FGM, in the context of known difficulties, and pre-existing cultural taboo’s around discussing FGM was raised, and there was considerable reflection on what these might look like.
The appropriate setting for FGM support services was discussed as something that needed exploring, including whether health was the right location for this, and if so whether hospital or community settings would be more acceptable. Many participants questioned whether health settings were the best or only place to discuss FGM. In particular, some uncertainty was raised in one group about whether GPs are the right people to be asking about FGM.
The need for professionals to be aware of FGM, including having skills to respond appropriately to women with FGM without seeming to be horrified or judgemental, was identified as important, with women describing their distress at reactions they or their friends had experienced in healthcare encounters.
What future needs were identified?
The best way of educating professionals was discussed, including learning how to incorporate community voices and experience into the education offered to professionals. Learning how to continue to break down barriers to talking about FGM, for community members and professionals was identified as important. The involvement of affected communities in designing services and facilitating acceptability and usage of services was a recurrent theme, and the role of community facilitators, or health advocates, both to support community members when accessing services, but also in training and educating professionals and developing services was felt to be important to learn more about, and consider implementing. The need to learn more about how legislation may be altering the types of FGM being practiced now, and how much FGM was occurring, when and where, was important.
What are the barriers
Legislation
The potential impact of the new legislation, on whether services could still be considered as safe and confidential, or acceptable to community members, was a dominant theme in all of our focus groups. The potential impact of the requirement to record and to report FGM to authorities without the consent of the community member on trust was consistently voiced as a major concern throughout this work, by community members (activists, advocates and community members) and by professionals (across health, education, and social care). Specific concerns were also raised by both community members and health professionals about a perceived double standard in the law, specifically, the FGM Act 2003- in particular that FGM is illegal yet there is a permissive societal attitude towards female cosmetic genital surgery which also comprises a range of genital-altering procedures for non-medical reasons.
Some expressed their views that the legislation against FGM was stigmatising and some participants described feeling that it was discriminatory against them and their culture. The community members we spoke to were united in their understanding that FGM is a form of child abuse, and in their commitment to supporting communities and families to protect their children from FGM (safeguarding). Some women observed however, that the safeguarding procedures for FGM were significantly different from the regulations for other forms of child abuse, and that they perceived this as discriminatory and disproportionate.
Cross cultural learning?
Much of the UK research into FGM has been undertaken within single community groups. One of our focus groups, and the multi-agency meeting included participants from a number of community groups (including women and men from Nigeria, Gambia, Ghana, Sudan, and Somalia). There was uncertainty about how transferable the experiences and needs of one community group may be to other communities, who may have different traditions and needs. How and whether to share experiences between communities, and how to create resources was raised. Many felt that learning from different communities’ experiences was informative and enriching, but for health education and resources, there was uncertainty about how this process could be used. There are repeated calls for resources to be community based, but a lack of clear understanding about what this entails, and how we can know if it has been achieved.
Whose voices?
The contribution of anti-FGM activists was acknowledged and hugely valued, but we were asked how to challenge the assumption that they speak for whole communities, and to create opportunities from which to hear and add previously unheard voices to the debate around FGM. How to involve men in the campaign against FGM, and also to understand their views and needs regarding FGM was identified as a research priority. We were asked whether anyone had researched the beliefs and needs of the cutters themselves, noting that they may depend on FGM for financial and status reasons, and therefore we should learn more about how to involve them in aspiring to eliminate the practice of FGM. The question of whether “any” FGM, or type of FGM was acceptable was raised.