You say you want a revolution: An empirical study of community-based participatory research with people with developmental disabilities

Abstract Background Community-based participatory research (CBPR) seeks to improve the responsiveness of science to community priorities and foster positive community change through equitable research collaborations between scientists and community members. CBPR resonates with disability rights principles, and is increasingly being used in disability research, though there are few studies of its use with people with developmental disabilities. Objective We conducted a prospective qualitative study to explore the experiences of scientists and community members in a multi-year CBPR project with people with developmental disabilities. Methods Over the four project years, we conducted periodic individual interviews and focus groups with members of the CBPR project, and used an inductive thematic analysis to identify and develop relational themes. Results We identified factors that contributed to the success of the CBPR project and factors that presented challenges to the CBPR project. We also identified potential individual, project, and societal level impacts of the CBPR project. Conclusions CBPR with people with developmental disabilities is possible and fruitful, and can serve as an effective model for the full inclusion of people with developmental disabilities in science and society at large.