Expériences des patients autistes en milieu hospitalier : une revue de portée

Titre original en anglais : Autistic patients' experiences of the hospital setting: A scoping review

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». un auteur·ice de cette publication est identifié·e comme autiste dans le projet.

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Greenwood, E., Cooklin, A., Barbaro, J., & Miller, C. (2023). Autistic patients' experiences of the hospital setting: A scoping review. Journal of Advanced Nursing, 80(3), 908-923. https://doi.org/10.1111/jan.15880

Date de publication: 24/09/2023 Ajout dans AutiHub: 07/09/2026 Type: Article Langue de l’article: Anglais
Source éditeur (DOI) Source OpenAlex

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Auteurs

Auteur·ices des publications
4
Auteur·ices de la publication identifié·es comme autistes
1 / 4 (25,0 %)
  1. Elly Greenwood
  2. Amanda Cooklin
  3. Josephine Barbaro *
  4. Charne Miller

Résumé

Résumé Objectif Explorer les facteurs qui influencent les expériences des patients autistes en milieu hospitalier. Méthode Une revue de portée. Sources de données Une recherche documentaire systématique utilisant les bases de données CINAHL, Medline et Google Scholar a été menée en septembre 2021 et mise à jour en janvier 2023. Cette revue repose sur le cadre méthodologique d'Arksey et O'Malley (International Journal of Social Research Methodology, 8(1):19–32, 2005), qui a été approfondi par l'extension des Preferred Reporting Items for Systematic Reviews and Meta-Analyses pour les revues de portée. Résultats Les patients autistes, ainsi que leurs familles et le personnel de santé, font face à plusieurs obstacles susceptibles d'avoir une incidence sur leurs expériences de soins de santé en milieu hospitalier. Parmi les 211 articles examinés, 30 étaient admissibles et ont été inclus. Notre revue a permis d'identifier deux thèmes principaux. Le premier thème, « difficultés liées aux expériences hospitalières », comprend quatre sous-thèmes : (1) la communication, (2) une inadéquation entre les besoins des patients autistes et l'environnement hospitalier, (3) les difficultés liées aux expériences des parents et (4) les difficultés liées aux systèmes hospitaliers. Le second thème, « facteurs facilitateurs améliorant les expériences hospitalières », comprend trois sous-thèmes : (1) la mise en place de parcours de soins, (2) le partenariat entre les parents et les experts et (3) les facteurs facilitateurs visant à améliorer les systèmes hospitaliers. En comprenant ces thèmes, nous pouvons nous efforcer de lever les obstacles auxquels sont confrontés les patients autistes et leurs familles, tout en tirant parti des facteurs facilitateurs afin d'améliorer leurs expériences hospitalières. Conclusion Il est essentiel de comprendre les expériences des patients autistes en milieu hospitalier, car ils présentent un risque important d'admission à l'hôpital en raison de leurs affections associées, allant d'aiguës à chroniques. En outre, les infirmiers et les autres membres du personnel médical doivent comprendre les expériences hospitalières et les difficultés propres aux patients autistes afin d'améliorer les soins et de favoriser de meilleures expériences hospitalières. Cette revue souligne en outre le besoin crucial d'adopter une approche collaborative et inclusive entre les patients autistes, leurs familles et le personnel de santé. Pour y parvenir, des initiatives de co-conception intégrant les perspectives et les expériences vécues de la communauté autiste sont nécessaires. En plaçant les voix autistes au premier plan de ces initiatives, il est espéré que les changements soient significatifs, pertinents et durables. Impact Comprendre les expériences hospitalières et les difficultés propres aux patients autistes peut améliorer leur qualité de vie et leur bien-être en réduisant le stress et l'anxiété pendant l'hospitalisation, conduisant à de meilleurs résultats de santé et potentiellement à des séjours hospitaliers plus courts. Cela peut également promouvoir une vision plus positive des soins de santé chez les personnes autistes, les encourageant à solliciter des soins médicaux lorsque cela est nécessaire, et avoir des répercussions sociétales plus larges, telles que la réduction des coûts de santé et l'amélioration de la santé et du bien-être généraux de la population. Les patients autistes présentent un risque important d'admission à l'hôpital en raison de leurs affections associées, allant d'aiguës à chroniques. Les infirmiers et les autres membres du personnel médical doivent comprendre les expériences hospitalières et les difficultés propres aux patients autistes afin d'améliorer les soins et de favoriser de meilleures expériences hospitalières. Contribution des patients ou du public Aucune contribution des patients ou du public.

Abstract Aim To explore the factors that affect the experiences of autistic patients in the hospital setting. Design A scoping review. Data Sources A systematic literature search using the databases CINAHL, Medline and Google Scholar was undertaken in September 2021 and updated in January 2023. This review is based on the methodological framework of Arksey and O'Malley (International Journal of Social Research Methodology, 8(1):19–32, 2005), which was further refined by the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses Extension for Scoping Reviews. Results Autistic patients, as well as their families and healthcare staff, face several barriers that can impact their healthcare experiences within hospital settings. Of 211 articles screened, 30 were eligible and included. Through our review, we identified two main themes. The first theme, ‘challenges to hospital experiences’, includes four sub‐themes: (1) communication, (2) a mismatch between the needs for autistic patients and the hospital environment, (3) challenges related to parents' experiences and (4) challenges related to hospital systems. The second theme, ‘facilitators that improve hospital experiences’, includes three sub‐themes: (1) provision of care pathways, (2) partnership between parents and experts and (3) facilitators to improve hospital systems. By understanding these themes, we can work to address the barriers that autistic patients and their families face, while leveraging the facilitators to improve their hospital experiences. Conclusion It is critical to understand the experiences of autistic patients in the hospital setting because they present a substantial risk of hospital admission due to their associated acute to chronic health conditions. Additionally, nurses and other medical staff must understand the unique hospital experiences and challenges of autistic patients to improve care and facilitate better hospital experiences. This review further highlights the crucial need to adopt a collaborative and inclusive approach between autistic patients, their families and healthcare staff. To achieve this, co‐design initiatives that incorporate the perspectives and lived experiences of the autistic community are necessary. By placing autistic voices at the forefront of these initiatives, it is hoped that changes are meaningful, relevant and can be sustained. Impact Understanding the unique hospital experiences and challenges of autistic patients can improve their quality of life and well‐being by reducing stress and anxiety during hospitalization, leading to better health outcomes and potentially shorter hospital stays. It can also promote a more positive view of healthcare among autistic individuals, encouraging them to seek medical care when needed and have broader societal impacts such as reducing healthcare costs and improving the overall health and well‐being of the population. Autistic patients present a substantial risk of hospital admission due to their associated acute to chronic conditions. Nurses and other medical staff must understand the unique hospital experiences and challenges of autistic patients to improve care and facilitate better hospital experiences. Patient or Public Contribution No patient or public contribution.

Bibliographie citée par cette référence

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Vue d’ensemble de la bibliographie citée

Ces indicateurs décrivent la bibliographie citée par cette publication. Un nom d’auteurice est compté chaque fois qu’il apparaît dans une référence citée : une même personne peut donc être comptée plusieurs fois. Les noms qui ne sont pas encore associés à un·e auteurice déjà présent·e dans AutiHub sont traités comme inconnus, pas comme non autistes. Dernier calcul : 12/09/2026 18:18.

Références citées
52
Avec un DOI
48
Sans DOI, à partir du texte brut de la bibliographie
4
3 / 52 (5,8 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
2 / 52 (3,8 %)
Références avec noms d’auteurices détectés
50 / 52 (96,2 %)
Sans nom d’auteurice détecté
2
Sans titre structuré
2
Sans identifiant stable
4
Références avec noms bruts d’auteurices restant à vérifier
2
Références avec problème de récupération des métadonnées externes
0
Ces indicateurs portent sur les références citées affichées sur cette page, après fusion des doublons techniques. Une référence sans DOI peut quand même soutenir les statistiques d’auteurices lorsqu’un titre et des noms d’auteurices sont disponibles.
Noms d’auteurices détectés dans la bibliographie citée
278
À partir du DOI ou de métadonnées externes
278
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
2
79 / 278 (28,4 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 199 / 278 (71,6 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
8 / 278 (2,9 %)
Calculé sur l’ensemble des noms d’auteurices détectés dans la bibliographie citée. Parmi les noms associés à un·e auteurice déjà présent·e dans AutiHub : 8 / 79 (10,1 %). Personnes distinctes identifiées comme autistes : 8 / 232 (3,4 %).
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