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Article
Community-Based Participatory Research to Adapt Health Measures for Use by People With Developmental Disabilities
Progress in Community Health Partnerships: Research, Education, and Action
  • Christina Nicolaidis, Portland State University
  • Dora Raymaker, Portland State University
  • Marsha Katz, Autistic Self Advocacy Network
  • Mary Oschwald, Portland State University
  • Rebecca Goe, University of Montana
  • Sandra Leotti, Portland State University
  • Leah Grantham, University of Montana
  • Eddie Plourde, Self-Advocacy Coalition of Oregon
  • Janice Salomon, Missoula People First
  • Rosemary B. Hughes, University of Montana
  • Laurie E. Powers, Portland State University
  • Partnering With People With Disabilities to Address Violence Consortium, Partnering With People With Disabilities to Address Violence Consortium
Document Type
Article
Publication Date
7-1-2015
Subjects
  • Public health -- Research -- Citizen participation,
  • People with disabilities -- Medical care -- Surveys,
  • Developmental disabilities -- Quantitative research,
  • Health planning,
  • Adaptability (Psychology) -- Measurement
Abstract

Background: People with developmental disabilities (DD) are often not included as participants in research owing to a variety of ethical and practical challenges. One major challenge is that traditional measurement instruments may not be accessible to people with DD. Participatory research approaches promise to increase the participation of marginalized communities in research, but few partnerships have successfully used such approaches to conduct quantitative studies people with DD.

Objective: To use a community-based participatory research (CBPR) approach to create an accessible, computer-assisted survey about violence and health in people with DD, and to psychometrically test adapted health instruments.

Methods: Our academic–community partnership, composed of academic researchers, people with DD, and supporters, collaboratively selected and modified data collection instruments, conducted cognitive interviews and pilot tests, and then administered the full survey to 350 people with DD.

Results: Although team members sometimes had opposing accommodation needs and adaptation recommendations, academic and community partners were able to work together successfully to adapt instruments to be accessible to participants with a wide range of DD. Results suggest the adapted health instruments had strong content validity and all but one had good to excellent internal consistency reliability (alpha, 0.81–0.94). The majority of participants (75%) responded that all or most of the questions were easy to understand.

Conclusions: Researchers should consider using participatory approaches to adapting instruments so people with DD can be validly included in research.

Description

Originally appeared in Progress in Community Health Partnerships: Research, Education, and Action, Volume 9, Issue 2, published by Johns Hopkins University Press. Can be found at https://www.press.jhu.edu/journals/progress_in_community_health_partnerships/

© 2015 The Johns Hopkins University Press

DOI
10.1353/cpr.2015.0037
Persistent Identifier
http://archives.pdx.edu/ds/psu/17300
Citation Information
Nicolaidis, C., Raymaker, D., Katz, M., Oschwald, M., Goe, R., Leotti, S., ... & Powers, L. E. (2015). Community-based participatory research to adapt health measures for use by people with developmental disabilities. Progress in community health partnerships: research, education, and action, 9(2), 157-170.