Une exploration coproduite des facteurs influençant la qualité de vie du point de vue d'adultes autistes

Titre original en anglais : A Coproduced Exploration of Factors Influential to Quality of Life from the Perspective of Autistic Adults

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Kuzminski, R., Bölte, S., Lawson, W., Falkmer, M., Black, M. H., Girdler, S., & Milbourn, B. (2024). A Coproduced Exploration of Factors Influential to Quality of Life from the Perspective of Autistic Adults. Autism in Adulthood, 7(5), 594-611. https://doi.org/10.1089/aut.2023.0091

Date de publication: 08/11/2024 Ajout dans AutiHub: 06/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
7
Auteur·ices de la publication identifié·es comme autistes
1 / 7 (14,3 %)
  1. Rebecca Kuzminski
  2. Sven Bölte
  3. Wenn Lawson *
  4. Marita Falkmer
  1. Melissa H. Black
  2. Sonya Girdler
  3. Ben Milbourn

Résumé

Objectif : Il est rapporté que les adultes autistes ont une qualité de vie (QoL) moins bonne que leurs pairs non autistes. Cependant, de nombreux outils utilisés pour mesurer leur QoL n'ont pas été élaborés pour les adultes autistes, mais pour la population générale. Il est possible que les facteurs contribuant à la QoL des personnes autistes diffèrent de ceux de la population générale, ce qui signifie que les outils couramment utilisés pourraient ne pas saisir adéquatement les nuances de la QoL des personnes autistes. Il est donc impératif que la QoL des personnes autistes soit conceptualisée de manière exhaustive du point de vue des adultes autistes. Méthodes : Nous avons utilisé une méthodologie d'entretiens qualitatifs semi-structurés guidée par une approche globale de coproduction afin de recueillir les facteurs contribuant à la QoL des personnes autistes. Une équipe de recherche, comprenant un chercheur autiste et un groupe de pilotage de cinq adultes autistes, a travaillé ensemble tout au long du processus de recherche. Un chercheur autiste supplémentaire a fourni des conseils sur la manière de coproduire authentiquement cette recherche. La coproduction de cette recherche a inclus le groupe de pilotage et le chercheur autiste dans l'élaboration de la méthodologie, du guide d'entretien, de l'analyse thématique et de la désignation des thèmes. Nous avons interrogé 29 adultes autistes âgés de 18 à 55 ans vivant en Australie. Résultats : L'analyse thématique coproduite a identifié cinq thèmes : activités et routines ; soutiens relationnels et socialisation ; esprit et corps ; expériences personnelles ; et environnement. Les participants ont décrit comment les sous-thèmes de chaque thème influençaient positivement et/ou négativement leur QoL. Parmi les exemples de sous-thèmes pouvant représenter des facteurs ayant une incidence particulière sur la QoL des adultes autistes figurent la compréhension de leur propre identité, les expériences sensorielles et l'incidence des attitudes sociétales. Conclusion : Bien que certains éléments identifiés par les adultes autistes apparaissent également dans les conceptualisations non autistes de la QoL, l'incidence et l'importance de ces facteurs peuvent différer des expériences non autistes. Nous avons également identifié certains facteurs pouvant avoir une incidence particulière sur la QoL des adultes autistes. Résumé à l'intention de la communauté : Ces résultats mettent en évidence les facteurs que les professionnels de la santé devraient prendre en compte lorsqu'ils travaillent avec des adultes autistes afin d'améliorer leur QoL. Ces résultats peuvent également éclairer l'élaboration de meilleures évaluations pour mesurer la QoL des personnes autistes.

Purpose: Autistic adults reportedly experience poorer quality of life (QoL) than their non-autistic peers. However, many tools used to measure their QoL were not developed for autistic adults, but for the general population. It is possible that factors contributing to the QoL of autistic individuals could vary from that of the general population, meaning commonly used tools may inadequately capture the nuances of autistic QoL. It is, therefore, imperative that autistic QoL is comprehensively conceptualized from the perspective of autistic adults. Methods: We used a qualitative semi-structured interview methodology guided by an overarching coproduction approach to capture factors contributing to autistic QoL. A research team, including an autistic researcher and a steering group of five autistic adults, worked together throughout the entire research process. An additional autistic researcher provided consultation about how to authentically coproduce this research. Coproducing this research included the steering group and autistic researcher in developing the methodology, the interview guide, and the thematic analysis and naming of the themes. We interviewed 29 autistic adults aged 18-55 who lived in Australia. Results: Coproduced thematic analysis identified five themes: activities and routines; relationship supports and socialization; mind and body; personal experiences; and environment. Participants described how subthemes within each theme positively and/or negatively impacted their QoL. Examples of subthemes that may represent factors uniquely impacting QoL for autistic adults include understanding their self-identity, sensory experiences, and the impact of societal attitudes. Conclusion: While some elements identified by autistic adults also appear in non-autistic conceptualizations of QoL, the impact and importance of these factors may vary from non-autistic experiences. We also identified some factors that may uniquely impact QoL for autistic adults. Community Brief: These findings highlight the factors that health professionals should consider when working with autistic adults to enhance their QoL. These results can also inform the development of better assessments to measure autistic QoL.

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
78
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
10 / 78 (12,8 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
21 / 262 (8,0 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 21 / 105 (20,0 %). Auteurices cité·es distinct·es identifié·es comme autistes : 15 / 227 (6,6 %).
Occurrences citées rattachées à la base AutiHub
105 / 262 (40,1 %)
Auteurices cité·es distinct·es rattaché·es : 77 / 227 (33,9 %)
Occurrences rattachées, non identifiées comme autistes
84 / 105 (80,0 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 84 / 262 (32,1 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 62 / 77 (80,5 %).
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