Deborah Nyirenda, Salla Sariola, Kate Gooding, Mackwellings Phiri, Rodrick Sambakunsi, Elvis Moyo, Chiwoza Bandawe, Bertie Squire & Nicola Desmond
Developing World Bioethics 18 (4):420-428 (2018)
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Abstract |
Community engagement to protect and empower participating individuals and communities is an ethical requirement in research. There is however limited evidence on effectiveness or relevance of some of the approaches used to improve ethical practice. We conducted a study to understand the rationale, relevance and benefits of community engagement in health research. This paper draws from this wider study and focuses on factors that shaped Community Advisory Group members’ selection processes and functions in Malawi. A qualitative research design was used; two participatory workshops were conducted with CAG members to understand their roles in research. Workshop findings were triangulated with insights from ethnographic field notes, key informant interviews with stakeholders, focus group discussions with community members and document reviews. Data were coded manually and thematic content analysis was used to identify main issues. Results have shown that democratic selection of CAG members presented challenges in both urban and rural settings. We also noted that CAG members perceived their role as a form of employment which potentially led to ineffective representation of community interests. We conclude that democratic voting is not enough to ensure effective representation of community's interests of ethical relevance. CAG members’ abilities to understand research ethics, identify potential harms to community and communicate feedback to researchers is critical to optimise engagement of lay community and avoid tokenistic engagement.
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Keywords | Africa bioethics community advisory group or community advisory board community engagement community representatives research |
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DOI | 10.1111/dewb.12163 |
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Experiences From a Community Advisory Board in the Implementation of Early Access to ART for All in Eswatini: A Qualitative Study.Charmaine Khudzie Mlambo, Eva Vernooij, Roos Geut, Eliane Vrolings, Buyisile Shongwe, Saima Jiwan, Yvette Fleming & Gavin Khumalo - 2019 - BMC Medical Ethics 20 (1):1-11.
Experiences From a Community Advisory Board in the Implementation of Early Access to ART for All in Eswatini: A Qualitative Study.Charmaine Khudzie Mlambo, Eva Vernooij, Roos Geut, Eliane Vrolings, Buyisile Shongwe, Saima Jiwan, Yvette Fleming & Gavin Khumalo - 2019 - BMC Medical Ethics 20 (1):50.
Forming and Implementing Community Advisory Boards in Low- and Middle-Income Countries: A Scoping Review.Yang Zhao, Thomas Fitzpatrick, Bin Wan, Suzanne Day, Allison Mathews & Joseph D. Tucker - 2019 - BMC Medical Ethics 20 (1):1-11.
Structural Coercion in the Context of Community Engagement in Global Health Research Conducted in a Low Resource Setting in Africa.Deborah Nyirenda, Salla Sariola, Patricia Kingori, Bertie Squire, Chiwoza Bandawe, Michael Parker & Nicola Desmond - 2020 - BMC Medical Ethics 21 (1):1-10.
Researching Multisystemic Resilience: A Sample Methodology.Michael Ungar, Linda Theron, Kathleen Murphy & Philip Jefferies - 2021 - Frontiers in Psychology 11.
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