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'We are the eyes and ears of researchers and community': understanding the role of community advisory groups in representing researchers and communities in Malawi.

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Nyirenda, Deborah, Sariola, Salla, Gooding, Kate ORCID: https://orcid.org/0000-0003-4926-0287, Phiri, Mackwellings, Sambakunsi, Rodrick, Moyo, Elvis, Bandawe, Chiwoza, Squire, Bertie ORCID: https://orcid.org/0000-0001-7173-9038 and Desmond, Nicola ORCID: https://orcid.org/0000-0002-2874-8569 (2018) ''We are the eyes and ears of researchers and community': understanding the role of community advisory groups in representing researchers and communities in Malawi.'. Developing World Bioethics, Vol 18, Issue 4, pp. 420-428.

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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 (CAG) 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.

Item Type: Article
Subjects: W General Medicine. Health Professions > W 21.5 Allied health personnel. Allied health professions
WA Public Health > WA 30 Socioeconomic factors in public health (General)
WA Public Health > Health Administration and Organization > WA 546 Local Health Administration. Community Health Services
WA Public Health > Health Administration and Organization > WA 590 Health education, Health communication
Faculty: Department: Clinical Sciences & International Health > Clinical Sciences Department
Clinical Sciences & International Health > Malawi-Liverpool-Wellcome Programme (MLW)
Digital Object Identifer (DOI): https://doi.org/10.1111/dewb.12163
Depositing User: Stacy Murtagh
Date Deposited: 17 Jan 2018 16:05
Last Modified: 23 Jan 2019 14:36
URI: https://archive.lstmed.ac.uk/id/eprint/8098

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