Recruiting and Retaining People With Disabilities for Qualitative Health Research: Challenges and Solutions

Author:

Banas Jennifer R.1ORCID,Magasi Susan2,The Kim2,Victorson David E.3

Affiliation:

1. Northeastern Illinois University, Chicago, Illinois, USA

2. The University of Illinois at Chicago, Illinois, USA

3. Northwestern University, Evanston, Illinois, USA

Abstract

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.

Funder

National Cancer Institute

Publisher

SAGE Publications

Subject

Public Health, Environmental and Occupational Health

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