Albert Juliet, Fyle Janet, Kartallozi Njomeza, Coho Christie, Otoo-Oyortey Naana, Papadaki Hekate, Evans Catrin, Saidan Dalia, Elneil Sohier, Anderson-Foster Natasha, Abdulcadir Jasmine, Mohamed Huda, Almadori Aurora
Imperial College Division of Womens, Children and Clinical Support, Imperial College Healthcare NHS Trust (ICHNT) and Imperial College London, London, UK.
Royal College of Midwives, London, UK.
Health Expect. 2025 Jun;28(3):e70275. doi: 10.1111/hex.70275.
This article presents patient and public involvement and engagement (PPIE) work undertaken to explore FGM survivors' and stakeholders' views on reconstructive surgery, potential service models, care pathways, barriers to access and other support needs. The aim was to set research priorities, identify key themes and help inform subsequent research in the field.
A national research collective was established comprising over 20 stakeholders, including FGM survivors/women with lived experience, healthcare professionals, academics and advocacy groups. The group undertook two discussion workshops with FGM survivors (n = 11 participants), two national stakeholder events (n = 142 attendees) and significant advocacy and partnership-building activities.
Key insights were that FGM survivors would value reconstructive surgery to address body image concerns, genital pain and sexual difficulties. Potential barriers to surgery included stigma, safeguarding concerns, lack of awareness and fear. Significant gaps were identified around women's knowledge of clitoral anatomy, FGM types and specialist services. Survivors and stakeholders emphasised the need to complement surgical reconstruction with a comprehensive care pathway including trauma counselling and psychosexual therapy.
This study highlights the importance of a survivor-led approach to FGM service development, as often the voices of FGM survivors are not included. The exercise demonstrated that, with the right approach, it is possible to engage 'minoritised communities/individuals from the global majority' and communities dispayed considerable willingness to participate in this sensitive research field. It also emphasises an urgent need for accessible, high-quality FGM care informed by the voices of those affected, to improve outcomes and support for FGM survivors in the United Kingdom.
Women with lived experience of FGM and women from FGM-affected communities, as well as other national stakeholders (including Non Government Organisation's and charities working with FGM survivors, academics, artists and campaigners were involved in the design and conduct of this study, analysis and interpretation of the data and preparation of the manuscript.
本文介绍了患者和公众参与及介入（PPIE）工作，旨在探讨女性生殖器切割（FGM）幸存者及利益相关者对重建手术、潜在服务模式、护理途径、获取障碍及其他支持需求的看法。目的是确定研究重点，识别关键主题，并为该领域的后续研究提供参考。
成立了一个全国性研究团队，由20多名利益相关者组成，包括FGM幸存者/有实际经历的女性、医疗保健专业人员、学者和倡导团体。该团队与FGM幸存者举办了两次讨论研讨会（11名参与者）、两次全国性利益相关者活动（142名与会者），并开展了重要的宣传和建立伙伴关系活动。
关键见解是，FGM幸存者重视通过重建手术解决身体形象问题、生殖器疼痛和性方面的困难。手术的潜在障碍包括耻辱感、安全保障问题、缺乏认识和恐惧。在女性对阴蒂解剖结构、FGM类型和专科服务的了解方面发现了重大差距。幸存者和利益相关者强调，需要通过包括创伤咨询和性心理治疗在内的全面护理途径来补充手术重建。
本研究强调了以幸存者为主导的方法对FGM服务发展的重要性，因为FGM幸存者的声音往往未被纳入。该活动表明，采用正确的方法，有可能让“来自全球多数群体的少数化社区/个人”参与进来，并且这些社区表现出相当大的意愿参与这个敏感的研究领域。它还强调迫切需要以受影响者的声音为依据，提供可及的、高质量的FGM护理，以改善英国FGM幸存者的治疗效果并为其提供支持。
有FGM实际经历的女性和来自受FGM影响社区的女性，以及其他国家利益相关者（包括与FGM幸存者合作的非政府组织和慈善机构、学者、艺术家和活动家）参与了本研究的设计与实施、数据的分析与解读以及稿件的撰写。
