Il est temps de changer la façon dont nous mesurons la qualité de vie et le bien-être des personnes autistes : une revue systématique

Ajouté le 07/07/2024

Type de contenu

Article de revue du type Revue de la littérature ( ; anglais)

Kate Simpson, Jessica Paynter, Marleen Westerveld, Larah van der Meer, Lee Patrick*, Gabrielle Hogg*, Helen Heussler, Melanie Heyworth*, Alison Gable, Hem Sid Chandran*, Rachael Bowen, Dawn Adams , Time to change how we measure quality of life and well‐being in autism: a systematic review publié dans la revue "Review journal of autism and developmental disorders", Preprint, 16 pages , doi:10.1007/s40489-024-00440-7

*Quatre co-auteur·rices sont autistes. [En savoir plus sur cette mention]

=> Accès libre et gratuit

Cette revue examine les méthodes utilisées pour rendre compte de la qualité de vie et/ou du bien-être des personnes autistes. Une recherche dans quatre bases de données (juin 2023) a identifié 256 études rapportant la qualité de vie et/ou le bien-être d'au moins une personne autiste. La qualité des études variait. Les résultats ont été synthétisés sur qui a fait rapport, sur qui a fait l'objet de rapport, comment les informations ont été obtenues, y compris les aménagements et la participation communautaire. Un tiers des études a utilisé des informateurs par procuration, plus de 80 % ont utilisé des mesures génériques de la qualité de vie et/ou du bien-être, les personnes autistes souffrant de déficience intellectuelle et de troubles de la communication étaient sous-représentées, un quart a inclus des aménagements et peu d'études ont inclus l'implication communautaire. Malgré les recherches croissantes sur la qualité de vie et le bien-être des personnes autistes, des recherches plus accessibles et inclusives sont nécessaires pour comprendre l’expérience des personnes autistes.

This review examines methods used to report on the QoL and/or well-being of autistic people. A search of four databases (June 2023) identified 256 studies that reported on the Qol and/or well-being of at least one autistic person. The quality of studies varied. Results were synthesised on who reported, who was reported on, how information was obtained including accommodations and community involvement. One-third used proxy informants, over 80% used generic measures of QoL and/or well-being, autistic people with intellectual impairment and communication disorders were underrepresented, one quarter included accommodations, and few studies included community involvement. Despite the growing research on QoL and well-being of autistic people, more accessible and inclusive research is required to understand autistic people’s experience.


Pour information:

(1) les références en bleu sont des ressources référencées sur notre site;

(2) les auteur·rices repris dans cette bibliographie dont le nom est en couleur ont publié d'autres ressources référencées sur le site. Cliquer sur le nom permet de voir la listes des ressources publiées et partagées sur le site;

(3) les auteur·rices dont le nom est suivi d'une astérisque ont publiquement divulgué être autistes. [En savoir plus sur cette mention]


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