“We are the stakeholders with the most at stake”: scientific and autism community co-researchers reflect on their collaborative experience in the CONNECT project

Research Involvement and Engagement

Patricia George-Zwicker¹  Jeffrey Gaudet²  Marc Robichaud²  Caroline Jose³  Aaron Bouma⁴  Louise Tardif⁴  Darlene Pugsley⁴  Luke Pugsley⁴  Mathieu Bélanger⁵ 

[1] Autistics Aloud, Halifax, NS, Canada;Patient partner, CONNECT project, Maritime Strategy for Patient Oriented Research Support Unit, Université de Moncton, Moncton, NB, Canada;Maritime SPOR SUPPORT Unit, Université de Moncton, Moncton, NB, Canada;Research Laboratory on Chronic Disease Prevention, Centre de formation médicale du Nouveau-Brunswick, Moncton, NB, Canada;Maritime SPOR SUPPORT Unit, Université de Moncton, Moncton, NB, Canada;Research Laboratory on Chronic Disease Prevention, Centre de formation médicale du Nouveau-Brunswick, Moncton, NB, Canada;Department of Family Medicine, Université de Sherbrooke, Sherbrooke, QC, Canada;Patient partner, CONNECT project, Maritime Strategy for Patient Oriented Research Support Unit, Université de Moncton, Moncton, NB, Canada;Research Laboratory on Chronic Disease Prevention, Centre de formation médicale du Nouveau-Brunswick, Moncton, NB, Canada;Department of Family Medicine, Université de Sherbrooke, Sherbrooke, QC, Canada;Vitalité Health Network, Centre hospitalier universitaire Dr Georges-L.-Dumont/Dr. Georges-L.-Dumont University Hospital Centre, Moncton, NB, Canada;

关键词: Autism Spectrum disorder;    Co-building;    Co-learning;    Multi-stakeholder;    Patient engagement;    Patient-oriented research;    Patient partner;   

DOI  :  10.1186/s40900-020-00233-2

来源: Springer

【 摘 要 】

BackgroundLittle research describes the everyday challenges and needs of autistic adults. In order to fill this data gap, the CONtiNuity of carE and support for autistiC adulTs (CONNECT) project set out to learn about the health and well-being of autistic adults as well as their service and support needs. To do so, CONNECT welcomed autistic adults and caregivers of autistic adults as members of the research team, alongside researchers, policy-makers, service providers and health professionals. Autistic adults were involved in every stage of the research project and participated in team meetings held several times a year as well as in numerous email exchanges.MethodsTwo feedback questionnaires were designed for this study: one for the scientific co-researchers and one for the autism community co-researchers (the project’s “patient partners”). Although the surveys varied from one another, they probed respondents to provide critical and constructive comments on issues that were central to their engagement in CONNECT. Four scientific co-researchers and four autism community co-researchers filled out the questionnaires. A comparative analysis was carried out on the responses provided to the open- and closed-ended survey questions as well as on complimentary data collected from the team’s documents.ResultsCONNECT was seen as a positive experience for both groups. Highlights included: helping tailor and design research and its relevant materials to better suit the needs of the autistic community; establishing relationships and creating long-lasting friendships with other autistic adults; gaining a better understanding of the research process; and forging new connections with regional, national and international stakeholders. Areas for improvement include: establishing clear roles, responsibilities and expectations from the start; outlining a strategy to address unforeseen changes in project leadership; and creating a platform allowing for the involvement and participation of a more representative sample of adults on the autism spectrum.ConclusionsWhile not without its challenges, CONNECT demonstrates that a collaborative multi-stakeholder approach engaging autistic adults can be an effective model for conducting research on adult autism. Autistic adults and their caregivers can make the research process more open and accessible and make its outputs more relevant, useful and meaningful to the wider autistic adult community.

【 授权许可】

CC BY