Abstract
ABSTRACTBuilding trust between researchers and communities involved in research is one goal of community engagement. This paper examines the implications of community engagement for trust within communities, including trust among community volunteers who assist with research and between these volunteers and other community members. We describe the experiences of two groups of community volunteers recruited as part of an HIV and TB intervention trial in Malawi: cluster representatives, recruited both to act as key informants for TB suspects and mortality reporting and to identify and report community concerns, and community counsellors, recruited to provide semi-supervised HIV self-testing. We examine tensions experienced due to playing multiple roles, and the implications of volunteer responsibilities for short- and long-term community relationships. Data was collected through a workshop, in-depth interviews and focus group discussions with volunteers and community members. While the volunteer system initially enhanced trust among volunteers and with the community, relationships deteriorated when cluster representatives assumed an additional supervisory role part-way through the trial. Combined with challenging recruitment targets and unequal power relations between volunteers, this new role damaged trust, with implications for volunteer well-being and social relationships. These experiences suggest researchers should consider potential social implications when designing community engagement systems.
Highlights
Community engagement (CE) is increasingly seen as important in biomedical research
This paper describes the experiences of two groups of community volunteers recruited to work within their own communities participating within an HIV/TB intervention trial in Malawi: cluster representatives (CRs) recruited as key informants for TB outcomes and mortality and concurrently as representing and reporting community concerns, and community counsellors (CCs) recruited more formally to provide semi-supervised HIV selftesting
We focus on community representatives recruited as key informants for TB outcomes and mortality and concurrently as representing and reporting community concerns and community counsellors recruited to provide semi-supervised HIV selftesting within the context of a community-based HIV/TB intervention trial, HitTB, in urban Blantyre, Malawi
Summary
Community engagement (CE) is increasingly seen as important in biomedical research. There is no universal understanding of the terms community or community engagement. The attention to community engagement is based largely on ethical goals (Simon & Mosavel, 2010) These goals include ensuring safety of research subjects through understanding community views on the research and identifying potential risks and means of averting those dangers (Anderson & Solomon, 2013; Dickert & Sugarman, 2005), ensuring that study procedures meet community needs (Boga et al, 2011), and protecting communities from exploitation, in developing country settings (Chantler et al, 2013; Gbadegesin & Wendler, 2006). Supporting these aims, development of trust between communities and researchers is often understood as a key function of engagement (Anderson & Solomon, 2013; Dunn, 2011; Kamuya, Marsh, Kombe, Geissler, & Molyneux, 2013; Molyneux, Peshu, & Marsh, 2005)
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