Dixon S, Agha K, Ali F, El-Hindi L, Kelly B, Locock L, Otoo-Oyortey N, Penny S, Plugge E, Hinton L
1Nuffield department of Primary Care Health Sciences, University of Oxford, Oxford, UK.
Oxford Against Cutting, Oxford, UK.
Res Involv Engagem. 2018 Sep 17;4:29. doi: 10.1186/s40900-018-0103-5. eCollection 2018.
Female 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.
We 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.
The 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.
There 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.
女性生殖器切割（FGM）是指出于非医疗原因对女性生殖器进行切割、改变或伤害的所有行为。它是一种针对妇女和儿童的暴力形式，没有任何益处，却有诸多危害。2014年，英国政府承诺致力于消除女性生殖器切割。为实现这一目标所采取的措施包括为专业人员创建教育和保障资源，以及进行立法变革，包括在英格兰和威尔士对专业人员规定强制性报告义务（即如果一名18岁以下女孩透露或经检查发现患有女性生殖器切割，那么该专业人员必须向警方报告），还有一个适用于英格兰国民保健服务（NHS）组织的女性生殖器切割增强数据集，要求向NHS数字部门提交有关接受过女性生殖器切割的妇女和女孩的个人数据。迄今为止，基层医疗服务机构对数据集回报的合规率一直很低。本报告描述了如何利用患者和公众参与（PPI）来确定研究和服务重点，以支持受女性生殖器切割影响的社区。
在2015 - 2016年引入这些立法变革后，我们举办了一系列患者和公众参与活动（4个焦点小组和一次多机构研讨会），与社区成员以及参与其护理的专业人员进行交流。我们要求参与者思考他们认为哪些是支持受女性生殖器切割影响社区的研究、知识和服务重点。
这些立法和报告要求对社区成员寻求咨询医疗服务所需信任的影响被确定为进一步研究的重要内容。服务发展的重点是提供全面的服务，以满足女性一生的需求。参与者强调了在为专业人员开展教育、设计服务和制定政策时，理解如何倾听、纳入并利用社区声音的重要性。
人们希望变革能从受影响的社区内部产生；任何学习和资源都需要以一种能够在妇女、社区和专业人员之间有效共享的方式共同创建和构建。关于如何定义社区咨询、如何识别何时咨询足够充分以及如何超越社区活动家去听取更广泛的声音，仍然存在问题。
