期刊
PROGRESS IN COMMUNITY HEALTH PARTNERSHIPS-RESEARCH EDUCATION AND ACTION
卷 5, 期 2, 页码 143-150出版社
JOHNS HOPKINS UNIV PRESS
DOI: 10.1353/cpr.2011.0022
关键词
Community-based participatory research; process issues; autism; autistic community; self-advocacy; disability; remote collaboration; atypical communication
资金
- NCRR NIH HHS [UL1 RR024140] Funding Source: Medline
- NIMH NIH HHS [K23 MH073008, K23MH073008, K23 MH073008-01] Funding Source: Medline
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.
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