Étude d'entretiens qualitatifs longitudinaux participatifs visant à comprendre la santé gynécologique et obstétricale des personnes autistes : protocole de l'étude Autism from menstruation to menopause

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

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Grant, A., Williams, G., Axbey, H., Wilkins, A., Firth, E., Lim, H., Cave, H., Williams, K., Ribbons, K., Sinfield, M., Craine, M., Caemawr, S., Holloway, W., Brown, A., Nicolaidis, C., Kara, H., & Ellis, R. (2024). Participatory longitudinal qualitative interview study to understand Autistic gynaecological and obstetric health: the Autism from menstruation to menopause study protocol. BMJ Open, 14(12), e088343. https://doi.org/10.1136/bmjopen-2024-088343

Date de publication: 01/12/2024 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
17
Auteur·ices de la publication identifié·es comme autistes
8 / 17 (47,1 %)
  1. Aimee Grant *
  2. Gemma Williams *
  3. Harriet Axbey *
  4. Abigail Wilkins
  5. Ellen Firth
  6. Hazel Lim
  1. Helen Cave
  2. Kathryn Williams *
  3. Kay Ribbons
  4. Madeleine Sinfield
  5. Monique Craine *
  6. Selena Caemawr *
  1. Willow Holloway *
  2. Amy Brown
  3. Christina Nicolaidis
  4. Helen Kara
  5. Rebecca Ellis *

Résumé

INTRODUCTION : L'autisme est un neurotype minoritaire présent tout au long de la vie, dès la naissance. Il existe peu de données probantes crédibles suggérant une variation selon le genre de la prévalence de l'autisme, malgré le sous-diagnostic historique des femmes. Les personnes autistes assignées de sexe féminin à la naissance (AFAB) présentent une santé physique et mentale moins bonne que leurs pairs non autistes. À ce jour, les expériences en matière de santé reproductive des personnes autistes AFAB ont été insuffisamment étudiées. MÉTHODES ET ANALYSE : Cette étude vise à co-développer une intervention d'amélioration de la qualité afin d'améliorer la santé reproductive des personnes autistes. L'étude utilise la recherche participative en partenariat avec la communauté (une approche similaire à la recherche participative communautaire), principalement par l'intermédiaire d'un Conseil communautaire qui co-gouverne l'étude. Afin de comprendre les besoins en santé reproductive, une investigation qualitative longitudinale utilisant des méthodes créatives sera menée auprès de 100 personnes autistes AFAB, avec 10 vagues de collecte de données sur 5 ans (entretiens n=500-1000). Les participants seront sélectionnés de manière raisonnée afin d'inclure des membres de la communauté autiste plus difficiles à atteindre, notamment ceux qui ne parlent pas ou parlent peu, qui présentent une déficience intellectuelle et ceux issus d'ethnies marginalisées. Les données seront analysées thématiquement avec la participation du Conseil communautaire. Le développement de l'intervention sera entrepris à partir de 2029. ÉTHIQUE ET DIFFUSION : Nous sommes une équipe dirigée par des personnes autistes qui adopte un modèle social du handicap. Toutefois, cette étude soulève des questions éthiques liées à des sujets sensibles et à des populations marginalisées. En conséquence, nous disposons de procédures robustes pour évaluer la capacité afin de garantir un consentement éclairé et de permettre aux participants de prendre part à l'étude sans accepter le partage des données. L'approbation éthique a été accordée par le comité d'éthique de la recherche de la School of Health and Social Care de l'Université de Swansea. Nous publierons nos résultats sous forme d'articles en libre accès dans des revues à comité de lecture.

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.

Bibliographie citée par cette référence

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Vue d’ensemble de l’inclusion dans la bibliographie

Ces indicateurs décrivent la bibliographie citée importée pour cette publication. Les métriques de références citées utilisent le total des références citées comme dénominateur. Les métriques d’auteurices cité·es indiquent si elles utilisent toutes les occurrences d’auteurices cité·es ou seulement les occurrences rattachées à des auteurices déjà intégré·es à la base de données AutiHub. Ils utilisent les rattachements mis en cache entre les auteurices cité·es et les auteurices intégré·es à la base de données AutiHub. Dernier calcul : 16/08/2026 11:30.

Références citées
56
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
16 / 56 (28,6 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
39 / 212 (18,4 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 39 / 94 (41,5 %). Auteurices cité·es distinct·es identifié·es comme autistes : 22 / 181 (12,2 %).
Occurrences citées rattachées à la base AutiHub
94 / 212 (44,3 %)
Auteurices cité·es distinct·es rattaché·es : 63 / 181 (34,8 %)
Occurrences rattachées, non identifiées comme autistes
55 / 94 (58,5 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 55 / 212 (25,9 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 41 / 63 (65,1 %).
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