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Evaluation Protocol for an Online Social Support Platform for Parents of Autistic Children And for Autistic Person

Principal investigator at CHU Sainte-Justine

Dre Alena Valderrama, MD, MSc, FRCPC
CHU Sainte Justine and University of Montreal

Research project summary

The objectives of this research are to identify barriers and facilitators to the implementation of the Autism Together platform; and to evaluate the effects of the use of the platform such as: improved perception of social support; improved coping skills; improved sense of personal self-efficacy; decreased feelings of loneliness and self-stigmatisation.

Who can participate?

  • Be a parent (father and/or mother) of an autistic child or be un autistic person;
  • Be 16 years of age or older;
  • Reside in Quebec;
  • Be registered on the ''Autisme-Ensemble'' platform and
  • Communicate in French and be comfortable with writing in French.

What should they expect in terms of process and engagement?

We will ask parents to complete a 15-minute online questionnaire. After two weeks of using the platform, we will invite you to complete another 8-minute online questionnaire to measure your satisfaction with the platform's functionality and ease of use in order to improve it. Finally, after 12 weeks of use, we will invite you to complete the same baseline instruments to measure and evaluate the effects of the platform on your well-being and coping strategies.

Why participate?

There are no direct benefits for you. However, you will contribute to the improvement of the tools developed to help parents of autistic children and autistic persons.

Risks and inconvenients

There are no risks involved in participating in this research. The only disadvantage is the time that will have to be spent filling in the questionnaires and participating in interviews. Participation in this research project is voluntary. You are free to refuse to participate in this research project. You can decide to stop participating in the research project at any time. If you do not participate in the research project or decide to withdraw, this will not penalise you in any way and you will be able to continue your exchanges in the platform. A list of community resources will be provided if needed.

Project team

  • Dr. Baudouin Forgeot d'Arc, MD, PhD, Research Psychiatrist, CHU Sainte-Justine and UdeM
  • Dr. Evengelia Lila Amirali, MD Psychiatrist, CHU Sainte-Justine and UdeM
  • Mme Jennifer Cohen, Assistante de recherche Research Assistant
  • Ms. Lucila Guerrero, expert collaborator, peer helper and autistic person
  • Ms. Ginette Boulanger, moderator and expert collaborator
  • Ms Joëlle Coriolan, Moderator and expert contributor
  • Ms. Andréanne Pâquet, Humanovis
  • Mr. Mathieu Giroux, expert collaborator and autistic person

Partnership

  • CIUSSS de la Mauricie-et-du-Centre-du-Québec
  • CIUSSS du Centre-Sud-de-l'Île-de-Montréal
  • CIUSSS du Nord-de-l'île-de-Montréal
  • Fédération québécoise de l'autisme
  • Fondation petits trésors
  • Institut universitaire en DI et en TSA

Contact information

Jennifer Cohen-Reyes
jennifer.cohen.reyes.hsj@ssss.gouv.qc.ca

Website

https://autisme-ensemble.org/

About this page
Updated on 11/15/2022
Created on 11/15/2022
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