Journal
QUALITATIVE HEALTH RESEARCH
Volume 29, Issue 7, Pages 1056-1064Publisher
SAGE PUBLICATIONS INC
DOI: 10.1177/1049732319833361
Keywords
qualitative research; quantitative research; health research; people with disabilities; community-based participatory research; recruitment and retention; qualitative; literature review; North American
Categories
Funding
- National Institutes of Health's National Cancer Institute [U54CA202995, U54CA202997, U54CA203000]
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There are 56.7 million people with disabilities (PWD) living in the United States; yet, PWD are significantly underrepresented in health research. Even when researchers purposively seek to include PWD in studies, challenges emerge related to recruitment and retention, leading to inadequate representation and surface understandings of this population. This in turn contributes to the perpetuation of implicit and explicit health disparities that are already experienced by this population. Grounded within a qualitative, community-based participatory health research framework, we highlight challenges associated with recruiting and retaining PWD in health research, including a critical analysis of the research enterprise structure, how this disables accessible research practices for PWD, and leads to continued skepticism among PWD regarding the value of participating in research. Finally, we propose solutions to create and maintain a culture of access and inclusion as well as long-term collaborative and equity-focused partnerships.
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