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

被引:47
作者
Banas, Jennifer R. [1 ]
Magasi, Susan [2 ]
The, Kim [3 ]
Victorson, David E. [4 ]
机构
[1] NE Illinois Univ, Dept Hlth Sci & Phys Educ, Chicago, IL 60625 USA
[2] Univ Illinois, Occupat Therapy & Disabil Studies, Chicago, IL 60680 USA
[3] Univ Illinois, Disabil Studies, Chicago, IL 60680 USA
[4] Northwestern Univ, Med Social Sci, Feinberg Sch Med, Evanston, IL USA
基金
美国国家卫生研究院;
关键词
qualitative research; quantitative research; health research; people with disabilities; community-based participatory research; recruitment and retention; qualitative; literature review; North American; INTELLECTUAL DISABILITIES; LEARNING-DISABILITY; INCLUSIVE RESEARCH; BARRIERS; ETHICS; PARTICIPATION; PERSPECTIVES; REFLECTIONS; STRATEGIES; RETENTION;
D O I
10.1177/1049732319833361
中图分类号
R1 [预防医学、卫生学];
学科分类号
1004 ; 120402 ;
摘要
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.
引用
收藏
页码:1056 / 1064
页数:9
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