Recruiting and Retaining People With Disabilities for Qualitative Health Research: Challenges and Solutions
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 represent...
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| Published in: | Qualitative health research Vol. 29; no. 7; pp. 1056 - 1064 |
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| Main Authors: | , , , |
| Format: | Journal Article |
| Language: | English |
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Los Angeles, CA
SAGE Publications
01-06-2019
SAGE PUBLICATIONS, INC |
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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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| AbstractList | 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. 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.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. |
| Author | Banas, Jennifer R. Victorson, David E. Magasi, Susan The, Kim |
| Author_xml | – sequence: 1 givenname: Jennifer R. orcidid: 0000-0003-1289-9255 surname: Banas fullname: Banas, Jennifer R. email: j-banas@neiu.edu – sequence: 2 givenname: Susan surname: Magasi fullname: Magasi, Susan – sequence: 3 givenname: Kim surname: The fullname: The, Kim – sequence: 4 givenname: David E. surname: Victorson fullname: Victorson, David E. |
| BackLink | https://www.ncbi.nlm.nih.gov/pubmed/30862260$$D View this record in MEDLINE/PubMed |
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| SubjectTerms | Community-Based Participatory Research Disabled Persons Health disparities Health Services Research Healthcare Disparities Humans Medical research Participation Participatory research Partnerships People with disabilities Perpetuation Personnel Selection Qualitative Research Recruitment United States |
| Title | Recruiting and Retaining People With Disabilities for Qualitative Health Research: Challenges and Solutions |
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