Literature DB >> 28654823

Supporting the role of community members employed as research staff: Perspectives of community researchers working in addiction research.

Gala True1, Leslie B Alexander2, Celia B Fisher3.   

Abstract

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. Published by Elsevier Ltd.

Entities:  

Keywords:  Addiction research; Community based research; Community engaged research; Community researchers; HIV/AIDS research; Moral experience; Research ethics; United States

Mesh:

Year:  2017        PMID: 28654823      PMCID: PMC5554448          DOI: 10.1016/j.socscimed.2017.06.023

Source DB:  PubMed          Journal:  Soc Sci Med        ISSN: 0277-9536            Impact factor:   4.634


  21 in total

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6.  "When they see us, it's like they have seen the benefits!": experiences of study benefits negotiations in community-based studies on the Kenyan Coast.

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Journal:  BMC Med Ethics       Date:  2016-04-29       Impact factor: 2.652

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6.  A systematic review on ethical challenges of 'field' research in low-income and middle-income countries: respect, justice and beneficence for research staff?

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  6 in total

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