Une revue réaliste des passeports de santé pour les adultes autistes

Titre original en anglais : A realist review of health passports for Autistic adults

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Ellis, R., Williams, K., Brown, A., Healer, E., & Grant, A. (2023). A realist review of health passports for Autistic adults. PLOS ONE, 18(9), e0279214. https://doi.org/10.1371/journal.pone.0279214

Date de publication: 08/09/2023 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
5
Auteur·ices de la publication identifié·es comme autistes
3 / 5 (60,0 %)
  1. Rebecca Ellis *
  2. Kathryn Williams *
  3. Amy Brown
  4. Eleanor Healer
  5. Aimee Grant *

Résumé

CONTEXTE : L’autisme est une composante normale de la diversité cognitive, entraînant des différences de communication et de traitement sensoriel, qui peuvent devenir invalidantes dans un monde neurotypique. Les personnes autistes présentent une probabilité accrue d’affections physiques et mentales concomitantes et meurent plus tôt que leurs pairs neurotypiques. Des soins de santé inaccessibles peuvent y contribuer. Les passeports de santé pour l’autisme (AHPs) sont des outils sur papier ou numériques qui peuvent être utilisés pour décrire les besoins en matière d’accessibilité des soins de santé ; ils sont recommandés dans les recommandations cliniques britanniques. Cependant, des questions subsistaient quant aux fondements théoriques et à l’efficacité des AHPs. MÉTHODES : Nous avons entrepris une recherche systématique de la littérature afin d’identifier des études portant sur les AHPs destinés aux adultes (âgés de plus de 16 ans) dans cinq bases de données. La littérature incluse a fait l’objet d’une évaluation réaliste. Les données ont été extraites à l’aide d’un formulaire standardisé, élaboré par l’équipe de recherche, qui prenait en compte le plan de recherche, la qualité des études pour la revue réaliste et les Contextes, Mécanismes et Résultats (CMOs) associés à chaque outil AHP. RÉSULTATS : 162 documents uniques ont été identifiés, et 13 éléments ont été inclus dans la revue. Un seul élément a été considéré comme étant de haute qualité. Les facteurs contextuels portaient sur l’inaccessibilité des soins de santé pour les patients autistes ainsi que sur le manque de confiance et de formation du personnel pour répondre aux besoins des personnes autistes. Les interventions étaient hétérogènes, la plupart des sources rapportant peu de détails quant à la manière dont elles avaient été élaborées. Les contenus le plus fréquemment inclus concernaient les préférences de communication. Les mécanismes n’étaient souvent pas énoncés ou étaient déduits par les examinateurs et manquaient de spécificité. Les résultats étaient inclus dans quatre études et portaient principalement sur l’adoption des AHPs, plutôt que sur des Résultats mesurant l’impact. CONCLUSION : Les données probantes sont insuffisantes pour conclure que les AHPs réduisent les inégalités de santé vécues par les personnes autistes. L’utilisation d’un outil AHP seul dans un Contexte de soins de santé qui ne répond pas aux besoins des personnes autistes, sans l’inclusion de la communauté autiste locale dans l’élaboration de l’outil, et sans une intervention plus large visant à réduire les obstacles connus aux inégalités de santé, peut signifier que les AHPs ne déclenchent aucun Mécanisme et ne peuvent donc pas affecter les Résultats.

BACKGROUND: Autism is a normal part of cognitive diversity, resulting in communication and sensory processing differences, which can become disabling in a neurotypical world. Autistic people have an increased likelihood of physical and mental co-occurring conditions and die earlier than neurotypical peers. Inaccessible healthcare may contribute to this. Autism Health Passports (AHPs) are paper-based or digital tools which can be used to describe healthcare accessibility needs; they are recommended in UK clinical guidance. However, questions remained as to the theoretical underpinnings and effectiveness of AHPs. METHODS: We undertook a systematic literature search identifying studies focused on AHPs for adults (aged over 16 years) from five databases. Included literature was subjected to realist evaluation. Data were extracted using a standardised form, developed by the research team, which considered research design, study quality for realist review and the Context, Mechanisms and Outcomes (CMOs) associated with each AHP tool. FINDINGS: 162 unique records were identified, and 13 items were included in the review. Only one item was considered high quality. Contextual factors focused on the inaccessibility of healthcare to Autistic patients and staff lack of confidence and training in supporting Autistic needs. Interventions were heterogeneous, with most sources reporting few details as to how they had been developed. The most frequently included contents were communication preferences. Mechanisms were often not stated or were inferred by the reviewers and lacked specificity. Outcomes were included in four studies and were primarily focused on AHP uptake, rather than Outcomes which measured impact. CONCLUSION: There is insufficient evidence to conclude that AHPs reduce the health inequalities experienced by Autistic people. Using an AHP tool alone in a healthcare Context that does not meet Autistic needs, without the inclusion of the local Autistic community developing the tool, and a wider intervention to reduce known barriers to health inequality, may mean that AHPs do not trigger any Mechanisms, and thus cannot affect Outcomes.

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
80
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
9 / 80 (11,2 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
18 / 316 (5,7 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 18 / 72 (25,0 %). Auteurices cité·es distinct·es identifié·es comme autistes : 14 / 283 (4,9 %).
Occurrences citées rattachées à la base AutiHub
72 / 316 (22,8 %)
Auteurices cité·es distinct·es rattaché·es : 51 / 283 (18,0 %)
Occurrences rattachées, non identifiées comme autistes
54 / 72 (75,0 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 54 / 316 (17,1 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 37 / 51 (72,5 %).
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