Il est temps de changer la manière dont nous mesurons la qualité de vie et le bien-être dans l’autisme : une revue systématique

Titre original en anglais : Time to Change How We Measure Quality of Life and Well-Being in Autism: A Systematic Review

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Simpson, K., Paynter, J., Westerveld, M. F., Meer, L. v. d., Patrick, L., Hogg, G., Heussler, H., Heyworth, M., Gable, A., Chandran, H. S., Bowen, R., & Adams, D. (2024). Time to Change How We Measure Quality of Life and Well-Being in Autism: A Systematic Review. Review Journal of Autism and Developmental Disorders, 13(2), 337-352. https://doi.org/10.1007/s40489-024-00440-7

Date de publication: 19/03/2024 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
Source OpenAlex Source éditeur (DOI) Texte intégral

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Auteurs

Auteur·ices des publications
12
Auteur·ices de la publication identifié·es comme autistes
4 / 12 (33,3 %)
  1. Kate Simpson
  2. Jessica Paynter
  3. Marleen F. Westerveld
  4. Larah van der Meer
  1. Lee Patrick *
  2. Gabrielle Hogg *
  3. H. Heussler
  4. Melanie Heyworth *
  1. Alison Gable
  2. Hem Sid Chandran *
  3. Rachael Bowen
  4. Dawn Adams

Résumé

Résumé 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 rendant compte de la qualité de vie et/ou du bien-être d’au moins une personne autiste. La qualité des études variait. Les résultats ont été synthétisés selon qui rendait compte, de qui il était rendu compte, et comment les informations étaient obtenues, y compris les aménagements et l’implication de la communauté. Un tiers utilisait des informateurs indirects, plus de 80 % utilisaient des mesures génériques de la qualité de vie et/ou du bien-être, les personnes autistes présentant une déficience intellectuelle et des troubles de la communication étaient sous-représentées, un quart incluait des aménagements, et peu d’études incluaient l’implication de la communauté. Malgré l’augmentation des recherches 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.

Abstract 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.

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
134
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
9 / 134 (6,7 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
18 / 510 (3,5 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 18 / 156 (11,5 %). Auteurices cité·es distinct·es identifié·es comme autistes : 13 / 447 (2,9 %).
Occurrences citées rattachées à la base AutiHub
156 / 510 (30,6 %)
Auteurices cité·es distinct·es rattaché·es : 108 / 447 (24,2 %)
Occurrences rattachées, non identifiées comme autistes
138 / 156 (88,5 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 138 / 510 (27,1 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 95 / 108 (88,0 %).
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