Obstacles et facilitateurs de la coproduction éthique avec des personnes autistes souffrant d'un trouble du comportement alimentaire

Titre original en anglais : Barriers and facilitators to ethical co-production with Autistic people with an eating disorder

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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Nimbley, E., Maloney, E., Buchan, K., Sader, M., Gillespie-Smith, K., & Duffy, F. (2024). Barriers and facilitators to ethical co-production with Autistic people with an eating disorder. Journal of Eating Disorders, 12(1), 113-113. https://doi.org/10.1186/s40337-024-01076-y

Date de publication: 09/08/2024 Ajout dans AutiHub: 06/07/2026 Type: Article Langue de l’article: Anglais
Source éditeur (DOI) Texte intégral Source OpenAlex

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Auteurs

Auteur·ices des publications
6
Auteur·ices de la publication identifié·es comme autistes
1 / 6 (16,7 %)
  1. Emy Nimbley
  2. Ellen Maloney *
  3. Kyle Buchan
  1. Michelle Sader
  2. Karri Gillespie-Smith
  3. Fiona Duffy

Résumé

CONTEXTE : La coproduction est la collaboration entre les chercheurs et la communauté ayant une expérience vécue dans la conception, la réalisation et la diffusion de la recherche. L'importance de la coproduction est de plus en plus défendue tant dans les domaines de l'autisme que des troubles du comportement alimentaire. Malgré cela, un manque de clarté persiste quant à la manière de définir, d'appliquer et de mener une coproduction éthique. Comprendre les difficultés courantes et ce que nous pouvons faire pour les surmonter est essentiel pour garantir une recherche éthique et significative avec des personnes autistes souffrant d'un trouble du comportement alimentaire. La présente étude a donc exploré la question suivante : quels sont les obstacles et les facilitateurs de la coproduction éthique avec des personnes autistes présentant un ED ? MÉTHODES : Cinq ateliers ont été menés avec 30 collaborateurs afin d'explorer les obstacles et les facilitateurs de la coproduction éthique. Les données synchrones (ateliers en ligne) et asynchrones (forum de discussion hors ligne) ont été analysées à l'aide d'une analyse thématique. Les thèmes ont été coproduits par un chercheur neurotypique et un chercheur autiste ayant une expérience vécue/en cours d'un trouble du comportement alimentaire. RÉSULTATS : Quatre thèmes ont été identifiés et exploraient les obstacles à la coproduction éthique : des partenariats inégaux, l'inaccessibilité de la recherche, l'exclusion liée aux diagnostics et les différences de communication. Trois thèmes ont été identifiés concernant les facilitateurs de la coproduction éthique : le pouvoir partagé (avec les sous-thèmes les relations, et non les rôles, et la compensation créative), la clarté et la transparence, et les approches affirmant l'autisme. DISCUSSION : Mener une coproduction éthique avec des personnes autistes souffrant de troubles du comportement alimentaire a le potentiel de générer une recherche significative pouvant être traduite en améliorations de la vie de la communauté autiste et de la communauté des troubles du comportement alimentaire. Pour y parvenir, les équipes de coproduction devraient tendre vers un pouvoir partagé et des relations à long terme, s'adapter aux différences et aux préférences de communication et opérer fermement dans le cadre d'une approche affirmant l'autisme. Il est espéré que les résultats de l'étude inspireront la collaboration, la discussion et une recherche novatrice, transposable.

BACKGROUND: Co-production is the collaboration between researchers and the lived experience community in designing, conducting and sharing research. The importance of co-production is increasingly advocated in both the autism and eating disorder fields. Despite this, there remains a lack of clarity at how to define, apply and conduct ethical co-production. Understanding common challenges and what we can do to overcome these challenges are integral to ensuring ethical and meaningful research with Autistic people with an eating disorder. The current study therefore explored: What are the barriers and facilitators to ethical co-production with Autistic people with an ED? METHODS: Five workshops were conducted with 30 collaborators exploring barriers and facilitators to ethical co-production. Synchronous (online workshops) and asynchronous (offline discussion forum) data was analysed using thematic analysis. Themes were co-produced by a neurotypical and Autistic researcher with lived/living experience of an eating disorder. RESULTS: Four themes were identified that explored barriers to ethical co-production: unequal partnerships, the inaccessibility of research, excluded by diagnoses and communication differences. Three themes were identified with regards to facilitators of ethical co-production: shared power (with sub-themes relationships, not roles and creative compensation), clarity and transparency and autism-affirming approaches. DISCUSSION: Conducting ethical co-production with Autistic people with eating disorders has the potential to generate meaningful research that can be translated into improving the lives of the Autistic and eating disorder community. To achieve this, co-production teams should strive towards shared power and long-term relationships, adapting for communication differences and preferences and operating firmly within an autism-affirming framework. It is hoped that study findings will inspire collaboration, discussion and novel, translatable research.

Bibliographie citée par cette référence

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Vue d’ensemble de la bibliographie citée

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Références citées
69
Avec un DOI
61
Sans DOI, à partir du texte brut de la bibliographie
7
12 / 69 (17,4 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
8 / 69 (11,6 %)
Références avec noms d’auteurices détectés
67 / 69 (97,1 %)
Sans nom d’auteurice détecté
2
Sans titre structuré
8
Sans identifiant stable
6
Références avec noms bruts d’auteurices restant à vérifier
2
Références avec problème de récupération des métadonnées externes
2
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
355
À partir du DOI ou de métadonnées externes
355
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
7
133 / 355 (37,5 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 222 / 355 (62,5 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
25 / 355 (7,0 %)
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 : 25 / 133 (18,8 %). Personnes distinctes identifiées comme autistes : 23 / 297 (7,7 %).
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