Background: Co-research methods have improved the inclusion of people with intellectual and developmental disabilities on research teams. This article presents the evaluation of the DS-TO-THE-MAX Co-Research Program to assess program process and outcomes. The team consists of co-researchers with Down syndrome and academic researchers who collaborate on health research projects important to the Down syndrome community.
Methods: We developed a logic model to map program components and outcomes. From the model, we identified and assessed five key areas. We interviewed seven co-researchers with Down syndrome and conducted a focus group with research assistants based on key areas. We analysed using thematic analysis.
Findings: We found that mutual recognition of contributions and multiple communication modes facilitated engagement and team connectedness. Co-researchers reported their interests and experiences drove contributions, and they saw benefits from collaborating with each other. Co-researchers noticed accessible team practices and described self-advocating. Though co-researchers did not explicitly identify as researchers, they reported making decisions and feeling heard and valued. They shared barriers such as difficult vocabulary.
Conclusions: Our evaluation showed that relationships and co-researchers' experiences and interests were central to research engagement. Co-research team evaluations are feasible mechanisms to improve inclusive collaboration for research team members with intellectual and developmental disabilities.
Accessible abstract: People with intellectual and developmental disabilities are working on research teams as co-researchers to study health.We looked at DS-TO-THE-MAX Co-Research Team to understand the program's goals and the experiences of co-researchers' with Down syndrome.We interviewed seven co-researchers with Down syndrome and did a focus group with research assistants to understand their experiences. We asked questions about the program's organisation and how co-researchers participate and feel included in research projects.Team connections and good communication were helpful for co-researchers, but sometimes difficult vocabulary made it hard to participate. Co-researchers did not see themselves as researchers but said they felt included and participated more when the project matched their interests.It is important to understand how co-research programs work. We can improve programs like ours to help team members with intellectual and developmental disabilities participate.
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