1 Northeastern Illinois University, Chicago, Illinois, USA.
2 The University of Illinois at Chicago, Illinois, USA.
Qual Health Res. 2019 Jun;29(7):1056-1064. doi: 10.1177/1049732319833361. Epub 2019 Mar 12.
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.
美国有 5670 万残疾人（PWD）；然而，残疾人在健康研究中代表性严重不足。即使研究人员有意将残疾人纳入研究，也会在招募和保留方面遇到挑战，导致代表性不足，对这一人群的理解浮于表面。这反过来又加剧了已经存在于这一人群中的隐性和显性健康差距。本研究基于定性的、以社区为基础的参与式健康研究框架，强调了在健康研究中招募和保留残疾人所面临的挑战，包括对研究企业结构的批判性分析，这如何使残疾人无法获得可及的研究实践，并导致残疾人对参与研究的价值持续持怀疑态度。最后，我们提出了一些解决方案，以创造和维持一种无障碍和包容的文化，以及长期的合作和以公平为重点的伙伴关系。
