Utilisation de Photovoice pour saisir la qualité de vie de la communauté autiste australienne

Titre original en anglais : Using Photovoice to Capture the Quality of Life of the Australian Autistic Community

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Kuzminski, R., Black, M. H., Bölte, S., Lawson, W., Falkmer, M., Philips, S., Girdler, S., & Milbourn, B. (2025). Using Photovoice to Capture the Quality of Life of the Australian Autistic Community. Autism in Adulthood, 8(4), 735-754. https://doi.org/10.1089/aut.2023.0178

Date de publication: 29/01/2025 Ajout dans AutiHub: 06/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
8
Auteur·ices de la publication identifié·es comme autistes
1 / 8 (12,5 %)
  1. Rebecca Kuzminski
  2. Melissa H. Black
  3. Sven Bölte
  4. Wenn Lawson *
  1. Marita Falkmer
  2. Simon Philips
  3. Sonya Girdler
  4. Ben Milbourn

Résumé

Contexte : Les recherches suggèrent que les adultes autistes ont une qualité de vie (QdV) moins bonne que leurs pairs non autistes. Cependant, la plupart des recherches à ce jour ont examiné la QdV des adultes autistes à travers un prisme neurotypique. Examiner qualitativement les facteurs de QdV du point de vue des personnes autistes elles-mêmes est nécessaire afin de fournir des éclairages plus précis sur la nature et la mesure de la QdV des adultes autistes. Méthodes : Nous avons exploré les facteurs influençant la QdV du point de vue de 15 adultes autistes à l'aide d'une méthodologie participative Photovoice. Les participants ont fourni 289 photos saisissant les facteurs influençant leur QdV, en discutant de la signification de ces photos dans des groupes de discussion et des entretiens. Un groupe de pilotage composé de quatre adultes autistes a travaillé en partenariat avec l'équipe de recherche tout au long du projet, coproduisant les résultats. Résultats : Une analyse thématique des photographies, des groupes de discussion et des entretiens a fait ressortir cinq thèmes : Activités, Environnement, Émotions et expériences, Identité individuelle et Besoins. Ces thèmes se recoupaient, influençant d'autres composantes de la QdV. Au sein de ces thèmes et sous-thèmes, les adultes autistes ont discuté de facteurs tels que les passions, l'identité et les expériences sensorielles qui influencent leur QdV. Conclusion : À l'aide de Photovoice, les personnes autistes ont saisi des facteurs influençant leur QdV, mettant en lumière les facteurs qui pourraient être inclus dans des outils de mesure de la QdV afin d'aider à mesurer la QdV des adultes autistes. Résumé à l'intention de la communauté : Ces résultats nous aident à comprendre les facteurs influençant la QdV des adultes autistes. Comprendre ces facteurs nous aide à déterminer quels facteurs devraient être représentés et évalués dans les outils de mesure de la QdV chez les adultes autistes, améliorant ainsi la précision de ces mesures.

Background: Research suggests that autistic adults experience poorer quality of life (QoL) than their non-autistic peers. However, most research to date has examined QoL in autistic adults through a neurotypical lens. Qualitatively examining QoL factors from the perspectives of autistic individuals themselves is necessary to provide more accurate insights into the nature and measurement of QoL for autistic adults. Methods: We explored factors influencing QoL from the perspective of 15 autistic adults using a participatory photovoice methodology. Participants provided 289 photos capturing the factors influencing their QoL, discussing the meaning of these photos in focus groups and interviews. A steering group of four autistic adults worked in partnership with the research team through the project, co-producing the results. Results: A thematic analysis of photographs, focus groups, and interviews captured five themes: Activities, Environment, Emotions and Experiences, Individual Identity, and Needs. These themes intersected with one another, influencing other components of QoL. Within these themes and subthemes, autistic adults discussed factors such as passions, identity, and sensory experiences that impact their QoL. Conclusion: Using photovoice, autistic individuals captured factors influencing their QoL, illuminating the factors that could be included in QoL measurement tools to help measure autistic adults' QoL. Community Brief: These findings help us to understand the factors influencing autistic adults' QoL. Understanding these factors helps us to determine what factors should be represented and rated in measurement tools of QoL in autistic adults, enhancing the accuracy of these measurements.

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
77
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
9 / 77 (11,7 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
15 / 247 (6,1 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 15 / 95 (15,8 %). Auteurices cité·es distinct·es identifié·es comme autistes : 11 / 211 (5,2 %).
Occurrences citées rattachées à la base AutiHub
95 / 247 (38,5 %)
Auteurices cité·es distinct·es rattaché·es : 70 / 211 (33,2 %)
Occurrences rattachées, non identifiées comme autistes
80 / 95 (84,2 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 80 / 247 (32,4 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 59 / 70 (84,3 %).
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