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

Area of Science:

• Health Research
• Disability Studies
• Community-Based Participatory Research

Background:

• Co-research methods are increasingly utilized to involve individuals with intellectual and developmental disabilities (IDDs) in research.
• The DS-TO-THE-MAX Co-Research Program pairs co-researchers with Down syndrome and academic researchers for health research projects.
• This study evaluates the DS-TO-THE-MAX program's processes and outcomes to understand its effectiveness.

Purpose of the Study:

• To evaluate the DS-TO-THE-MAX Co-Research Program's processes and outcomes.
• To identify facilitators and barriers to inclusive collaboration within the co-research team.
• To understand the experiences and perspectives of co-researchers with Down syndrome.

Main Methods:

• A logic model was developed to map program components and outcomes.
• Semi-structured interviews were conducted with seven co-researchers with Down syndrome.
• A focus group was held with research assistants, and thematic analysis was used for data interpretation.

Main Results:

• Mutual recognition and diverse communication methods fostered engagement and team cohesion.
• Co-researchers' contributions were driven by personal interests and experiences, leading to perceived benefits.
• Accessible practices and self-advocacy were noted, though participants did not always identify as researchers; challenges included difficult vocabulary.

Conclusions:

• Relationships and co-researchers' lived experiences are crucial for successful research engagement.
• Co-research team evaluations provide a feasible approach to enhance inclusive collaboration for individuals with IDDs.
• Findings offer insights for improving co-research programs to maximize participation and value for all team members.