For truly inclusive research: developing a training program co-developed with adults with intellectual disabilities

Project origin and summary
In recent years, Vivre Grand has been increasingly approached by social science and health research teams to encourage the participation of adults with intellectual disabilities in research projects. However, supporting these people in an equitable way requires significant human resources, which puts a great deal of pressure on the organization.

Due to a lack of resources, staff often return to the same experienced people, which limits the diversity of viewpoints represented. This situation raises the issue of epistemic justice, i.e. the importance of all voices, including those who are often marginalized, being able to contribute to the production of knowledge.

In response to this challenge, Vivre Grand wishes to co-develop a research training program for adults with intellectual disabilities. This program aims to give them the tools they need to participate fully in research, while making these environments more accessible and inclusive. Ultimately, this initiative will contribute to improving the overall health and well-being of those involved.

Objective
The aim of this project is to co-develop, with Vivre Grand, a research training program for adults with intellectual disabilities. Two specific objectives will guide the process:

  1. To improve the training program by evaluating its content, structure, pedagogical activities and proposed forms of support.

  2. Document the inclusive research process, highlighting the strategies used and their impact.

Deliverables
Three main deliverables will be produced by the team:

  • A page on the Chaire Autodétermination et Handicap website
  • A training program and implementation support guide
  • A workshop at the annual Grand Rendez-vous of the Société québécoise de la déficience intellectuelle (SQDI)

Anticipated results / Spin-offs
This project will enable adults with intellectual disabilities to develop research skills and actively influence the projects in which they participate. Their contribution will foster the adoption of more inclusive practices in scientific circles. The program will be offered free of charge online, tested with new groups, and integrated into a university course. These actions will reinforce Vivre Grand’s role as a leader in inclusive research.

Global progress
Define the research question based on a literature review.
Choose research methods and explore funding sources.
Prepare and initiate the first data collection, taking ethical issues into account.
Continue data collection and begin analysis.
Prepare and carry out initial knowledge mobilization activities.
Launch the program and disseminate results on a large scale.
Partners
Team members

Chercheur·euse·s principal·e·s :

  • Élise Milot, Université Laval
  • Marie Grandisson, Université Laval

Partenaire principal :

  • Ariane Deveau, Responsable de la formation et de la recherche chez Vivre Grand

Personnes avec un savoir expérientiel :

  • Nicolas Giroux
  • Rosalie Voyer

Autres membres de l’équipe et affiliations :

  • Bertille Marthouret, Étudiante à la maîtrise en travail social
  • Martin Caouette, Professeur en psychoéducation à l’UQTR et titulaire de la Chaire de recherche Autodétermination et Handicap
  • Sarah Pellerin, Professionnelle de recherche et coordonnatrice de la Chaire de recherche Autodétermination et Handicap
Intersectoral collaboration agent
Scientific sectors
Innovation stages
  • Émergence
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