IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v187y2017icp67-75.html
   My bibliography  Save this article

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

Author

Listed:
  • True, Gala
  • Alexander, Leslie B.
  • Fisher, Celia B.

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.

Suggested Citation

  • True, Gala & Alexander, Leslie B. & Fisher, Celia B., 2017. "Supporting the role of community members employed as research staff: Perspectives of community researchers working in addiction research," Social Science & Medicine, Elsevier, vol. 187(C), pages 67-75.
    • Handle: RePEc:eee:socmed:v:187:y:2017:i:c:p:67-75
    DOI: 10.1016/j.socscimed.2017.06.023
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277953617303921
    Download Restriction: Full text for ScienceDirect subscribers only
    File URL: https://libkey.io/10.1016/j.socscimed.2017.06.023?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    1. Mosavel, Maghboeba & Ahmed, Rashid & Daniels, Doria & Simon, Christian, 2011. "Community researchers conducting health disparities research: Ethical and other insights from fieldwork journaling," Social Science & Medicine, Elsevier, vol. 73(1), pages 145-152, July.
    2. Catherine Molyneux & Jane Goudge & Steve Russell & Jane Chuma & Tebogo Gumede & Lucy Gilson, 2009. "Conducting health-related social science research in low income settings: ethical dilemmas faced in Kenya and South Africa," Journal of International Development, John Wiley & Sons, Ltd., vol. 21(2), pages 309-326.
    3. Grady, C. & Hampson, L.A. & Wallen, G.R. & Rivera-Goba, M.V. & Carrington, K.L. & Mittleman, B.B., 2006. "Exploring the ethics of clinical research in an urban community," American Journal of Public Health, American Public Health Association, vol. 96(11), pages 1996-2001.
    4. P. W. Geissler, 2011. "Transport To Where?," Journal of Cultural Economy, Taylor & Francis Journals, vol. 4(1), pages 45-64, February.
    5. Kingori, Patricia, 2013. "Experiencing everyday ethics in context: Frontline data collectors perspectives and practices of bioethics," Social Science & Medicine, Elsevier, vol. 98(C), pages 361-370.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Tengbeh, Angus Fayia & Enria, Luisa & Smout, Elizabeth & Mooney, Thomas & Callaghan, Mike & Ishola, David & Leigh, Bailah & Watson-Jones, Deborah & Greenwood, Brian & Larson, Heidi & Lees, Shelley, 2018. "“We are the heroes because we are ready to die for this country”: Participants' decision-making and grounded ethics in an Ebola vaccine clinical trial," Social Science & Medicine, Elsevier, vol. 203(C), pages 35-42.
    2. Gouda, H.N. & Kelly-Hanku, A. & Wilson, L. & Maraga, S. & Riley, I.D., 2016. "“Whenever they cry, I cry with them”: Reciprocal relationships and the role of ethics in a verbal autopsy study in Papua New Guinea," Social Science & Medicine, Elsevier, vol. 163(C), pages 1-9.
    3. Gouda, Hebe N. & Flaxman, Abraham D. & Brolan, Claire E. & Joshi, Rohina & Riley, Ian D. & AbouZahr, Carla & Firth, Sonja & Rampatige, Rasika & Lopez, Alan D., 2017. "New challenges for verbal autopsy: Considering the ethical and social implications of verbal autopsy methods in routine health information systems," Social Science & Medicine, Elsevier, vol. 184(C), pages 65-74.
    4. Ragin, Deborah Fish & Ricci, Edmund & Rhodes, Rosamond & Holohan, Jennifer & Smirnoff, Margaret & Richardson, Lynne D., 2008. "Defining the "community" in community consultation for emergency research: Findings from the community VOICES study," Social Science & Medicine, Elsevier, vol. 66(6), pages 1379-1392, March.
    5. Chiumento, Anna & Rahman, Atif & Frith, Lucy, 2020. "Writing to template: Researchers’ negotiation of procedural research ethics," Social Science & Medicine, Elsevier, vol. 255(C).
    6. Watson, Sharon, 2022. "‘Don't cross the line, you're a researcher and not an educator’: Incorporating indigenous researchers' moral perspectives to improve ethical protocols in health research," Social Science & Medicine, Elsevier, vol. 315(C).
    7. Hutchinson, Eleanor & Nayiga, Susan & Nabirye, Christine & Taaka, Lilian & Staedke, Sarah G., 2018. "Data value and care value in the practice of health systems: A case study in Uganda," Social Science & Medicine, Elsevier, vol. 211(C), pages 123-130.
    8. Enid Schatz & Nicole Angotti & Sangeetha Madhavan & Christie Sennott, 2015. "Working with teams of "insiders"," Demographic Research, Max Planck Institute for Demographic Research, Rostock, Germany, vol. 32(12), pages 369-396.
    9. James, Myfanwy & Kasereka, Joseph Grace & Kasiwa, Benjamin & Kavunga-Membo, Hugo & Kambale, Kasonia & Grais, Rebecca & Muyembe-Tamfum, Jean-Jacques & Bausch, Daniel G. & Watson-Jones, Deborah & Lees, , 2023. "Protection, health seeking, or a laissez-passer: Participants’ decision-making in an EVD vaccine trial in the eastern Democratic Republic of the Congo," Social Science & Medicine, Elsevier, vol. 323(C).

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:socmed:v:187:y:2017:i:c:p:67-75. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Catherine Liu (email available below). General contact details of provider: http://www.elsevier.com/wps/find/journaldescription.cws_home/315/description#description .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.