'Je ne suis pas seulement un cobaye': perception académique et communautaire de la recherche participative sur l'autisme

Ajouté le 09/07/2024

Type de contenu

Article de revue du type Recherche scientifique ( ; anglais)

Jac den Houting * , Julianne Higgins * , Kathy Isaacs * , Joanne Mahony , Elizabeth Pellicano
‘I’m not just a guinea pig’: Academic and community perceptions of participatory autism research publié dans la revue "Autism" n°25, vol.1, 16 pages , doi: 10.1177/1362361320951696

*Trois co-auteur·rices se sont publiquement identifié·es comme autistess. [En savoir plus sur cette mention]

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Résumé/Présentation

Malgré les appels à une augmentation de l'engagement communautaire dans la recherche sur l'autisme, la base de preuves publiée suggère que la recherche participative de l'autisme reste rare. Cette étude a examiné l'étendue et la nature de l'engagement communautaire dans des projets de recherche australiens commandés par 'Autism CRC'. Les données ont été recueillies à l'aide d'une enquête en ligne, comprenant des éléments d'échelle quantitative et des réponses qualitatives, pour laquelle ont participé 64 partenaires universitaires et 15 partenaires communautaires. Les résultats quantitatifs ont indiqué que les parties prenantes de la recherche sur l'autisme en Australie sont largement favorables à l'engagement communautaire dans la recherche et ont eu des expériences positives de la recherche participative. Ces résultats n'étaient cependant pas entièrement corroborés par les résultats qualitatifs, ce qui suggère que les participants manquaient de compréhension de la recherche participative et ont tenu des attitudes qui peuvent entraver la conduite d'une recherche participative réussie. Les problèmes systémiques dans les contextes de recherche ont également été perçus comme entrave de l'engagement communautaire dans la recherche. Les partenaires universitaires et communautaires bénéficieraient d'une meilleure compréhension des approches de recherche participative, associées à des changements pratiques et épistémologiques au niveau systémique, pour garantir que l'engagement communautaire futur dans la recherche sur l'autisme soit respectueux, équitable et bénéfique pour toutes les parties prenantes.

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