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

Prog Community Health Partnersh. 2011 Summer;5(2):143-50. doi: 10.1353/cpr.2011.0022.

Abstract

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.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Autistic Disorder / psychology*
  • Community-Based Participatory Research / methods
  • Community-Based Participatory Research / organization & administration*
  • Community-Institutional Relations
  • Decision Making
  • Humans
  • Patient Advocacy*
  • Self Disclosure*