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

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». un auteur·ice de cette publication est identifié·e comme autiste dans le projet.

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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 la bibliographie citée

Ces indicateurs décrivent la bibliographie citée par cette publication. Un nom d’auteurice est compté chaque fois qu’il apparaît dans une référence citée : une même personne peut donc être comptée plusieurs fois. Les noms qui ne sont pas encore associés à un·e auteurice déjà présent·e dans AutiHub sont traités comme inconnus, pas comme non autistes. Dernier calcul : 02/10/2026 13:57.

Références citées
77
Avec un DOI
63
Sans DOI, à partir du texte brut de la bibliographie
14
13 / 77 (16,9 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
4 / 77 (5,2 %)
Références avec noms d’auteurices détectés
73 / 77 (94,8 %)
Sans nom d’auteurice détecté
4
Sans titre structuré
2
Sans identifiant stable
10
Références avec noms bruts d’auteurices restant à vérifier
3
Références avec problème de récupération des métadonnées externes
0
Ces indicateurs portent sur les références citées affichées sur cette page, après fusion des doublons techniques. Une référence sans DOI peut quand même soutenir les statistiques d’auteurices lorsqu’un titre et des noms d’auteurices sont disponibles.
Noms d’auteurices détectés dans la bibliographie citée
247
À partir du DOI ou de métadonnées externes
247
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
3
114 / 247 (46,2 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 133 / 247 (53,8 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
21 / 247 (8,5 %)
Calculé sur l’ensemble des noms d’auteurices détectés dans la bibliographie citée. Parmi les noms associés à un·e auteurice déjà présent·e dans AutiHub : 21 / 114 (18,4 %). Personnes distinctes identifiées comme autistes : 15 / 215 (7,0 %).
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