Grant Aimee, Williams Gemma L, Axbey Harriet, Wilkins Abigail, Firth Ellen, Lim Hazel, Cave Helen, Williams Kathryn, Ribbons Kay, Sinfield Madeleine, Craine Monique, Caemawr Selena, Holloway Willow, Brown Amy, Nicolaidis Christina, Kara Helen, Ellis Rebecca
Swansea University, Swansea, UK
Swansea University, Swansea, UK.
BMJ Open. 2024 Dec 15;14(12):e088343. doi: 10.1136/bmjopen-2024-088343.
Autism is a lifelong minority neurotype present from birth. There is a dearth of credible evidence to suggest gender variation in Autism prevalence, despite historical under-diagnosis of women. Autistic people Assigned Female At Birth (AFAB) have worse physical and mental health compared with non-Autistic peers. To date, the reproductive health experiences of Autistic AFAB people have been under-investigated.
This study aims to co-develop a quality improvement intervention to improve the reproductive health of Autistic people. The study uses Community Partnered Participatory Research (an approach similar to Community-Based Participatory Research), largely through a Community Council that co-governs the study. To understand reproductive health needs, a longitudinal qualitative investigation using creative methods will be undertaken with 100 Autistic AFAB people with 10 waves of data collection over 5 years (interview n=500-1000). Participants will be purposively selected to include harder-to-reach members of the Autistic community, including those who are non-speaking or semi-speaking, have a learning disability and those from marginalised ethnicities. Data will be analysed thematically with Community Council involvement. Intervention development will be undertaken from 2029 onwards.
We are an Autistic-led team that adopts a social model of disability. However, this study raises ethical issues relating to sensitive topics and marginalised populations. Accordingly, we have robust procedures in place to assess capacity to ensure informed consent and to allow participants to take part without opting into data sharing. Ethical approval has been awarded by the Swansea University School of Health and Social Care Research Ethics Committee. We will publish our findings as open access articles in peer-reviewed journals.
自闭症是一种从出生就存在的终身性少数神经类型。尽管历史上女性被诊断不足，但缺乏可信证据表明自闭症患病率存在性别差异。出生时被指定为女性的自闭症患者（AFAB）与非自闭症同龄人相比，身心健康状况更差。迄今为止，自闭症AFAB人群的生殖健康经历尚未得到充分研究。
本研究旨在共同开发一种质量改进干预措施，以改善自闭症患者的生殖健康。该研究采用社区伙伴参与式研究（一种类似于基于社区的参与式研究的方法），主要通过一个共同管理该研究的社区委员会进行。为了了解生殖健康需求，将对100名自闭症AFAB人群进行一项使用创新方法的纵向定性调查，在5年内进行10轮数据收集（访谈n = 500 - 1000）。参与者将被有目的地选择，以纳入自闭症社区中较难接触到的成员，包括那些不会说话或半会说话、有学习障碍以及来自边缘化种族的人。数据将在社区委员会的参与下进行主题分析。干预措施的开发将从2029年开始。
我们是一个由自闭症患者主导的团队，采用残疾社会模式。然而，本研究提出了与敏感话题和边缘化人群相关的伦理问题。因此，我们制定了完善的程序来评估能力，以确保知情同意，并允许参与者在不选择参与数据共享的情况下参与。斯旺西大学健康与社会关怀研究伦理委员会已授予伦理批准。我们将在同行评审期刊上以开放获取文章的形式发表我们的研究结果。
