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. 2024 Dec 15;14(12):e088343.
doi: 10.1136/bmjopen-2024-088343.

Participatory longitudinal qualitative interview study to understand Autistic gynaecological and obstetric health: the Autism from menstruation to menopause study protocol

Aimee Grant  1 , Gemma L Williams  2 , Harriet Axbey  2 , Abigail Wilkins  2 , Ellen Firth  2 , Hazel Lim  2 , Helen Cave  2 , Kathryn Williams  2   3 , Kay Ribbons  2 , Madeleine Sinfield  2 , Monique Craine  2 , Selena Caemawr  2 , Willow Holloway  2 , Amy Brown  2 , Christina Nicolaidis  4 , Helen Kara  5 , Rebecca Ellis  2
Affiliations

Participatory longitudinal qualitative interview study to understand Autistic gynaecological and obstetric health: the Autism from menstruation to menopause study protocol

Aimee Grant et al. BMJ Open. .

Abstract

Introduction: 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.

Methods and analysis: 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.

Ethics and dissemination: 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.

Keywords: Community-Based Participatory Research; Disabled Persons; GYNAECOLOGY; Health Services Accessibility; OBSTETRICS; QUALITATIVE RESEARCH.

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Conflict of interest statement

Competing interests: AG: Salary paid by the study's grant. Grants from Swansea University for Autism and maternity studies. Honoraria for speaking about Autism and reproductive health, including from Gold Lactation, iLactation, Lactation Consultants GB. Travel expenses paid for presenting at UNICEF Baby Friendly Conference 2023. Advisory board member for the FAMILIAR study. Non-executive director for Disability Wales. GLW: Salary paid by the study's grant. Economic and Social Research Council Postdoctoral Fellowship award paid to me. Consulting fees from National Development Team for Inclusion. Honoraria for lectures: Therapist Neurodiversity Collective (USA) and Max Planck Institute of Animal Behavior, Konstanz (Germany), which also included support for travel. Volunteer Grants Manager for The Queery, Brighton, England (a co-operative and radical bookshop / vegan café). HA: Salary paid by the study's grant. AW: Honoaraium paid for attending the study's community council. EF: Honoaraium paid for attending the study's community council. Payment of speaking fees: Edgehill University. HL: Honoaraium paid for attending the study's community council. Consulting fees: Autside education. Unpaid leadership roles in: West Glamorgan Regional Healthboard Stakeholder Reference Group; The Welsh Government's Ministerial Advisory Group on Neurodivergence; Director of Chinese Autism (CACIC). HC: Honoaraium paid for attending the study's community council. KW: Honoaraium paid for attending the study's community council. ESRC PhD studentship. Consulting fees paid to Autistic UK CIC: Pearson's Publishing, AQA. Non executive director for Autistic UK CIC. Member of Autism from Menstruation to Menopause study advisory board. KR: Honoaraium paid for attending the study's community council. Contractor to Campfire Cymru providing forest school services for Autistic people and their families. MS: Honoaraium paid for attending the study's community council. MC: Honoaraium paid for attending the study's community council. Contract paid to me from Size of Wales. Consulting fees paid to me from: Tata steel, Catnic, Steel Park, Bridgend Council, New Horizons, ARC mental health centre, Neurodiversity Self Advocacy, Aubergine Café, Unite Union, GMB Union, Community Union, University of Jersey. Travel expenses from: Independent Advisory Group for Dyfed Powys Police. Unpaid leadership roles: Independent Advisory Group for Dyfed Powys Police; Director of Neurodivergent Matters (sole trader). Paid Community council member on research studies run by Cardiff University, University of Kent, University of York. SC: Honoaraium paid for attending the study's community council. Grants or contracts paid to Aubergine: Arts Council Wales; National Emergencies Trust (via Disability Wales). Grants paid to me: Arts Council Wales. Director of Aubergine Café CIC. WH: Honoaraium paid for attending the study's community council. Member of Autism from Menstruation to Menopause study advisory board. Unpaid leadership roles: Director and Trustee of Disability Wales; Director of Autistic UKCIC; Trustee of Fair Treatment for the Women of Wales; Trustee Rape and Sexual Assault Centre North Wales; Member of The Welsh Government's Disability Task Force; Member of The Welsh Government's Ministerial Advisory Group on Neurodivergence; Member of The National Autism Teams Advisory Groups; Co-Chair of North Wales Integrated Autism Service Strategy Board. AB: Unpaid mentor to Grant on the fellowship associated with the study. Swansea University funding for Autism and maternity research. CN: Paid advisor on the study. Grants or contracts with payments to Portland State University as PI or Co-I: National Institutes of Health; Agency for Healthcare Research and Quality; Patient-Centered Outcomes Research Institute. consulting fees paid by: National Institutes of Mental Health; Organization for Autism Research. Stipend for serving as Editor-in-Child of peer reviewed journal (Autism in Adulthood) and support for attending International Society for Autism Research annual meetings: Mary Ann Liebert, Inc. Payment of honoraria for invited talks: Multiple universities; American Speech and Hearing Association; New Jersey Autism Center for Excellence.HK: Paid advisor on the study. RE: Salary paid by the study's grant.

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