Associate Professor, Section of General Internal Medicine & Geriatrics, Tulane University School of Medicine, Core Investigator, South Central Mental Illness Research Education and Clinical Center, Southeast Louisiana Veterans Healthcare System, 1555 Poydras St. Room 827, New Orleans LA 70112, United States.
Mary Hale Chase Chair in the Social Sciences and Social Work Research and Professor, Graduate School of Social Work and Social Research, 300 Airdale Rd, Bryn Mawr, PA 19010, United States.
Soc Sci Med. 2017 Aug;187:67-75. doi: 10.1016/j.socscimed.2017.06.023. Epub 2017 Jun 20.
Community researchers are laypersons who conduct research activities in their own communities. In addiction and HIV research, community researchers are valued for their insider status and knowledge. At the same time, their presence on the research team raises concerns about coercion and confidentiality when community researchers and participants know each other personally, and the work of navigating between the worlds of research and community leads to moral distress and burnout for some community researchers. In this paper, we draw upon the concept of 'moral experience' to explore the local moral worlds of community researchers in the context of addiction research. In February and March 2010, we conducted focus groups with 36 community researchers employed on community-based addiction studies in the United States to elicit perspectives on ethical and moral challenges they face in their work and insights on best practices to support their role in research. Community researchers described how their values were realized or thwarted in the context of research, and their strategies for coping with shifting identities and competing priorities. They delineated how their knowledge could be used to inform development of research protocols and help principal investigators build and maintain trust with the community researchers on their teams. Our findings contribute to current understandings of the moral experiences of community members employed in research, and inform policies and practices for the growing field of community-engaged research. Funders, research organizations, and research ethics boards should develop guidelines and standards to ensure studies have key resources in place to support community researchers and ensure quality and integrity of community-engaged work. Investigators who work with community researchers should ensure channels for frontline staff to provide input on research protocols and to create an atmosphere where challenges and concerns can be openly and safely discussed.
社区研究人员是指在自己所在社区开展研究活动的非专业人士。在成瘾和 HIV 研究中,社区研究人员因其内部人士的身份和知识而受到重视。与此同时,由于社区研究人员和参与者彼此熟悉,他们在研究团队中的存在引起了关于强制和保密的担忧,同时,在研究和社区之间进行协调的工作也导致一些社区研究人员产生道德困境和倦怠感。在本文中,我们借鉴“道德体验”的概念,探讨了成瘾研究背景下社区研究人员的局部道德世界。2010 年 2 月和 3 月,我们在美国进行了 36 次社区研究人员的焦点小组讨论,以了解他们在工作中面临的伦理和道德挑战的观点,以及支持他们在研究中发挥作用的最佳实践的见解。社区研究人员描述了他们的价值观在研究背景下是如何实现或受阻的,以及他们应对身份转变和竞争优先级的策略。他们详细说明了他们的知识如何用于为研究方案的制定提供信息,并帮助首席研究员在团队中与社区研究人员建立和维护信任。我们的研究结果有助于当前对参与研究的社区成员的道德体验的理解,并为日益发展的社区参与研究领域的政策和实践提供信息。资助者、研究组织和研究伦理委员会应制定准则和标准,以确保研究有必要的资源来支持社区研究人员,并确保社区参与工作的质量和完整性。与社区研究人员合作的研究人员应确保一线工作人员有渠道对研究方案提出意见,并营造一个可以公开和安全地讨论挑战和关注点的氛围。