Evaluation of a Co-Research Program: optimising engagement in research.

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.