A1 Refereed original research article in a scientific journal

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




AuthorsNyirenda Deborah, Sariola Salla, Gooding Kate, Phiri Mackwellings , Sambakunsi Rodrick , Moyo Elvis,
Bandawe Chiwoza, Squire Bertie, Desmond Nicola

PublisherJohn Wiley & Sons, Inc.

Publication year2018

JournalDeveloping World Bioethics

Volume18

Issue4

First page 420

Last page428

Number of pages9

ISSN1471-8731

eISSN1471-8847

DOIhttps://doi.org/10.1111/dewb.12163

Self-archived copy’s web addresshttps://research.utu.fi/converis/portal/detail/Publication/26027895


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.


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