Collaboration strategies in nontraditional community-based participatory research partnerships: lessons from an academic-community partnership with autistic self-advocates.

摘要

BACKGROUND: Most community-based participatory research (CBPR) projects involve local communities defined by race, ethnicity, geography, or occupation. Autistic self-advocates, a geographically dispersed community defined by disability, experience issues in research similar to those expressed by more traditional minorities. OBJECTIVES: We sought to build an academic-community partnership that uses CBPR to improve the lives of people on the autistic spectrum. METHODS: The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) includes representatives from academic, self-advocate, family, and professional communities. We are currently conducting several studies about the health care experiences and well-being of autistic adults. LESSONS LEARNED: We have learned a number of strategies that integrate technology and process to successfully equalize power and accommodate diverse communication and collaboration needs. CONCLUSIONS: CBPR can be conducted successfully with autistic self-advocates. Our strategies may be useful to other CBPR partnerships, especially ones that cannot meet in person or that include people with diverse communication needs.