« Je me suis sentie rabaissée et ridiculisée parce que j'avais mal » : une enquête en ligne sur l'expérience des personnes autistes concernant les soins pour la perte de grossesse (perte périnatale) au Royaume-Uni✰

Titre original en anglais : “I felt belittled and ridiculed for being in pain”: An online survey of Autistic people's experience of care for pregnancy loss (perinatal loss) in the United Kingdom✰

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Grant, A., Griffiths, C., Williams, K., & Brown, A. (2024). “I felt belittled and ridiculed for being in pain”: An online survey of Autistic people's experience of care for pregnancy loss (perinatal loss) in the United Kingdom✰. Midwifery, 141, 104266. https://doi.org/10.1016/j.midw.2024.104266

Date de publication: 13/12/2024 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
4
Auteur·ices de la publication identifié·es comme autistes
2 / 4 (50,0 %)
  1. Aimee Grant *
  2. Catrin Griffiths
  3. Kathryn Williams *
  4. Amy Brown

Résumé

CONTEXTE : Environ 3 % des personnes sont autistes ; les femmes peuvent être sous-diagnostiquées. Les personnes autistes signalent un manque de compréhension de la part du personnel, de la stigmatisation et des obstacles environnementaux à l'utilisation des services de sage-femme. On ne sait pas si ces problèmes sont présents dans les services de perte périnatale. OBJECTIF : Comprendre les expériences des personnes autistes en matière de soins pour la perte périnatale. MÉTHODES : Une enquête en ligne destinée aux adultes autistes au Royaume-Uni ayant été enceintes, utilisant des questions fermées et ouvertes. Les données ont été analysées de manière descriptive, à l'aide de tests de Kruskal-Wallis et d'une analyse thématique. RÉSULTATS : La majorité des pertes semblaient être survenues au début de la grossesse. Parmi les 67 participants, plus de la moitié (58,2 %, n = 39) sollicitaient systématiquement des soins de santé lors d'une perte périnatale, mais 28,4 % (n = 19) n'ont jamais eu accès à des soins. Parmi ceux qui ont reçu des soins de santé (n = 48 ; 71,6 %), plus de la moitié (n = 27 ; 56,3 %) ne savaient pas qu'ils étaient autistes à ce moment-là, et une seule personne a indiqué aux professionnels de santé qu'elle était autiste. Quatre participants ont identifié des situations où le personnel était soutenant ou bienveillant, mais la majorité des expériences étaient négatives, les problèmes signalés portant sur la communication, la manière dont le soutien était fourni, le soulagement insuffisant de la douleur et l'environnement hospitalier. Nous avons généré un thème général : « traumatisme ». CONCLUSION : Les personnes autistes du Royaume-Uni ont identifié d'importants problèmes d'accès liés au handicap concernant les soins pour la perte périnatale, en plus des problèmes signalés par la population générale. Les services de perte périnatale du Royaume-Uni ont besoin d'investissements urgents afin de pouvoir fournir des soins centrés sur la personne à tous. Le personnel soutenant les personnes confrontées à une perte périnatale devrait recevoir une formation à l'autisme affirmant la neurodiversité et être conscient que de nombreuses personnes autistes confrontées à une perte périnatale peuvent ne pas avoir de diagnostic ou ne pas le partager.

BACKGROUND: Around 3 % of people are Autistic; women may be under-diagnosed. Autistic people report lack of staff understanding, stigma and environmental barriers to using midwifery services. It is not known if these issues are present in perinatal loss services. AIM: To understand Autistic people's experiences of care for perinatal loss. METHODS: An online survey for Autistic adults in the United Kingdom who had been pregnant, using closed and open questions. Data were analysed descriptively, using Kruskal-Wallis tests and thematically. RESULTS: The majority of losses appeared to be early in pregnancy. Among 67 participants, over half (58.2 %, n = 39) always sought healthcare during a perinatal loss, but 28.4 % (n = 19) never accessed care. Of those who received healthcare (n = 48; 71.6 %), over half (n = 27; 56.3 %) did not know they were Autistic at the time, and just one person told health professionals that they were Autistic. Four participants identified instances where staff were supportive or kind, but the majority of experiences were negative, with reported issues focused on communication, the way support was provided, inadequate pain relief and the hospital environment. We generated one overarching theme: "trauma". CONCLUSION: Autistic people from the UK identified significant Disability-related access issues with perinatal loss care in addition to issues reported by a general population. UK Perinatal loss services need urgent investment to be able to provide person-centred care to all. Staff supporting perinatal loss should receive neurodiversity-affirming Autism training and be aware that many Autistic people experiencing perinatal loss may not have or share a diagnosis.

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
54
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
12 / 54 (22,2 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
35 / 201 (17,4 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 35 / 95 (36,8 %). Auteurices cité·es distinct·es identifié·es comme autistes : 21 / 175 (12,0 %).
Occurrences citées rattachées à la base AutiHub
95 / 201 (47,3 %)
Auteurices cité·es distinct·es rattaché·es : 72 / 175 (41,1 %)
Occurrences rattachées, non identifiées comme autistes
60 / 95 (63,2 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 60 / 201 (29,9 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 51 / 72 (70,8 %).
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