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

Nyirenda, Deborah ORCID: 0000-0002-5867-4687, Sariola, Salla, Gooding, Kate, Phiri, Mackwellings, Sambakunsi, Rodrick, Moyo, Elvis, Bandawe, Chiwoza, Squire, Bertie and Desmond, Nicola ORCID: 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, 18 (4). pp. 420-428.

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Official URL: http://dx.doi.org/10.1111/dewb.12163

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
Uncontrolled Keywords:	Africa, bioethics, community advisory group or community advisory board, community engagement, community representatives, research
Depositing User:	Symplectic Admin
Date Deposited:	07 Feb 2020 09:56
Last Modified:	19 Jan 2023 00:04
DOI:	10.1111/dewb.12163
Open Access URL:	https://doi.org/10.1111/dewb.12163
Related URLs:	Author Publisher
URI:	https://livrepository.liverpool.ac.uk/id/eprint/3073920