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

Jennifer R. Banas; Susan Magasi; Kim The; David E. Victorson

doi:10.1177/1049732319833361

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

Jennifer R. Banas^*, Susan Magasi, Kim The, David E. Victorson

^*Corresponding author for this work

Medical Social Sciences

Research output: Contribution to journal › Article › peer-review

46 Scopus citations

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.

Original language	English (US)
Pages (from-to)	1056-1064
Number of pages	9
Journal	Qualitative Health Research
Volume	29
Issue number	7
DOIs	https://doi.org/10.1177/1049732319833361
State	Published - Jun 1 2019

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Research reported in this publication was supported, in part, by the National Institutes of Health’s National Cancer Institute, Grant Numbers U54CA202995, U54CA202997, and U54CA203000. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Research reported in this publication was supported, in part, by the National Institutes of Health?s National Cancer Institute, Grant Numbers U54CA202995, U54CA202997, and U54CA203000. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Keywords

North American
community-based participatory research
health research
literature review
people with disabilities
qualitative
qualitative research
quantitative research
recruitment and retention

ASJC Scopus subject areas

Public Health, Environmental and Occupational Health

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1177/1049732319833361

Cite this

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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.",

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

Abstract

Funding

Keywords

ASJC Scopus subject areas

UN SDGs

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