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让代表性不足的群体参与健康研究:经验教训。

Engaging Underrepresented Communities in Health Research: Lessons Learned.

作者信息

Yu Zhiyuan, Kowalkowski Jennifer, Roll Anne E, Lor Maichou

机构信息

School of Nursing, Johns Hopkins University, Baltimore, MD, USA.

School of Nursing, University of Wisconsin-Madison, Madison, WI, USA.

出版信息

West J Nurs Res. 2021 Oct;43(10):915-923. doi: 10.1177/0193945920987999. Epub 2021 Jan 15.

Abstract

Members of marginalized communities experience health disparities or inequities and are underrepresented in health research. Community engagement in research is a catalyst for researchers to address health disparities while prioritizing community needs and strengthening community capacity. There is limited knowledge on how to engage underrepresented communities throughout the research process, particularly on initiating a partnership and planning research with a community. The purpose of this reflection piece is to share individual cases of research engagement within four communities: immigrant postpartum women, rural residents engaged in farming, low literate and non-English speaking adults, and individuals with intellectual disabilities in the United States. In each case, we explain how we initiated partnerships with the communities, continued to integrate community feedback to guide research questions, and implemented tailored methodologies. Finally, we discuss commonalities and differences in approaches used, tailoring within, and lessons learned when working with these diverse, underrepresented communities during the research process.

摘要

边缘化社区的成员面临健康差异或不平等,且在健康研究中的代表性不足。社区参与研究是促使研究人员解决健康差异问题的催化剂,同时优先考虑社区需求并增强社区能力。关于如何在整个研究过程中让代表性不足的社区参与进来,尤其是如何与社区建立伙伴关系并规划研究,目前的相关知识有限。这篇反思文章的目的是分享在四个社区开展研究参与的具体案例:美国的移民产后妇女、从事农业的农村居民、低文化水平且非英语母语的成年人以及智障人士。在每个案例中,我们都解释了我们是如何与这些社区建立伙伴关系的,如何持续整合社区反馈以指导研究问题,以及如何实施量身定制的方法。最后,我们讨论了在研究过程中与这些多样化的、代表性不足的社区合作时,所采用方法的共性与差异、内部调整以及所吸取的经验教训。

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