Stratégies de collaboration dans des partenariats de recherche participative communautaire non traditionnels : leçons tirées d'un partenariat universitaires-communauté avec des auto-représentants autistes

Titre original en anglais : Collaboration Strategies in Nontraditional Community-Based Participatory Research Partnerships: Lessons From an Academic–Community Partnership With Autistic Self-Advocates

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Nicolaidis, C., Raymaker, D. M., McDonald, K., Dern, S., Ashkenazy, E., Boisclair, W. C., Robertson, S., & Baggs, A. (2011). Collaboration Strategies in Nontraditional Community-Based Participatory Research Partnerships: Lessons From an Academic–Community Partnership With Autistic Self-Advocates. Progress in Community Health Partnerships: Research, Education, and Action, 5(2), 143-150. https://doi.org/10.1353/cpr.2011.0022

Date de publication: 01/06/2011 Ajout dans AutiHub: 04/07/2026 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
4 / 8 (50,0 %)
  1. Christina Nicolaidis
  2. Dora M Raymaker *
  3. Katherine McDonald
  4. Sebastian Dern
  1. Elesia Ashkenazy *
  2. W. Cody Boisclair *
  3. Scott Robertson *
  4. Amanda Baggs

Résumé

Contexte : La plupart des projets de recherche participative communautaire (CBPR) impliquent des communautés locales définies par la race, l’origine ethnique, la géographie ou la profession. Les auto-représentants autistes, une communauté géographiquement dispersée définie par le handicap, rencontrent dans la recherche des problèmes similaires à ceux exprimés par des minorités plus traditionnelles. Objectifs : Nous avons cherché à établir un partenariat entre le milieu universitaire et la communauté qui utilise la CBPR pour améliorer la vie des personnes appartenant au spectre autistique. Méthodes : L’Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) comprend des représentants des communautés universitaire, d’auto-représentants, de familles et de professionnels. Nous menons actuellement plusieurs études sur les expériences en matière de soins de santé et le bien-être des adultes autistes. Enseignements tirés : Nous avons appris un certain nombre de stratégies qui intègrent la technologie et les processus afin d’égaliser avec succès le pouvoir et de répondre à divers besoins de communication et de collaboration. Conclusions : La CBPR peut être menée avec succès avec des auto-représentants autistes. Nos stratégies peuvent être utiles à d’autres partenariats de CBPR, en particulier à ceux qui ne peuvent pas se réunir en personne ou qui incluent des personnes ayant des besoins de communication divers.

Background: Most community-based participatory research (CBPR) projects involve local communities defined by race, ethnicity, geography, or occupation. Autistic self-advocates, a geographically dispersed community defined by disability, experience issues in research similar to those expressed by more traditional minorities. Objectives: We sought to build an academic–community partnership that uses CBPR to improve the lives of people on the autistic spectrum. Methods: The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) includes representatives from academic, self-advocate, family, and professional communities. We are currently conducting several studies about the health care experiences and well-being of autistic adults. Lessons Learned: We have learned a number of strategies that integrate technology and process to successfully equalize power and accommodate diverse communication and collaboration needs. Conclusions: CBPR can be conducted successfully with autistic self-advocates. Our strategies may be useful to other CBPR partnerships, especially ones that cannot meet in person or that include people with diverse communication needs.

Bibliographie citée par cette référence

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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
60
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
2 / 60 (3,3 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
3 / 86 (3,5 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 3 / 8 (37,5 %). Auteurices cité·es distinct·es identifié·es comme autistes : 3 / 81 (3,7 %).
Occurrences citées rattachées à la base AutiHub
8 / 86 (9,3 %)
Auteurices cité·es distinct·es rattaché·es : 8 / 81 (9,9 %)
Occurrences rattachées, non identifiées comme autistes
5 / 8 (62,5 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 5 / 86 (5,8 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 5 / 8 (62,5 %).
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