‘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; Sariola, Salla; Gooding, Kate; Phiri, Mackwellings; Sambakunsi, Rodrick; Moyo, Elvis; Bandawe, Chiwoza; Squire, S. Bertel; Desmond, Nicola

doi:10.1111/dewb.12163

Cited by 35 publications

(63 citation statements)

References 2 publications

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“…This exercise helped to improve community understanding of study information before giving consent [ 24 ]. Ethical issues pertaining to community engagement have however been widely discussed particularly in the literature on Community Advisory Boards (CABs) [ 25 – 29 ]. Nevertheless, successful examples of engaging CABs to enhance ethical conduct of research have been reported in cases where CABs have been properly set up, they understand their advisory roles and they have the ability to analyze and communicate ethical issues [ 27 ].…”

Section: Discussionmentioning

confidence: 99%

Structural coercion in the context of community engagement in global health research conducted in a low resource setting in Africa

et al. 2020

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Background While community engagement is increasingly promoted in global health research to improve ethical research practice, it can sometimes coerce participation and thereby compromise ethical research. This paper seeks to discuss some of the ethical issues arising from community engagement in a low resource setting. Methods A qualitative study design focusing on the engagement activities of three biomedical research projects as ethnographic case studies was used to gain in-depth understanding of community engagement as experienced by multiple stakeholders in Malawi. Data was collected through participant observation, 43 In-depth interviews and 17 focus group discussions with community leaders, research staff, community members and research participants. Thematic analysis was used to analyse and interpret the findings. Results The results showed that structural coercion arose due to an interplay of factors pertaining to social-economic context, study design and power relations among research stakeholders. The involvement of community leaders, government stakeholders, and power inequalities among research stakeholders affected some participants’ ability to make autonomous decisions about research participation. These results have been presented under the themes of perception of research as development, research participants’ motivation to access individual benefits, the power of vernacular translations to influence research participation, and coercive power of leaders. Conclusion The study identified ethical issues in community engagement practices pertaining to structural coercion. We conclude that community engagement alone did not address underlying structural inequalities to ensure adequate protection of communities. These results raise important questions on how to balance between engaging communities to improve research participation and ensure that informed consent is voluntarily given.

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Section: Discussionmentioning

confidence: 99%

Structural coercion in the context of community engagement in global health research conducted in a low resource setting in Africa

et al. 2020

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“…For instance, several studies have reported challenges in engaging community members as collaborative partners through community advisory boards (CABs) or community advisory groups (CAGs). These studies have reported conflicting roles of CABs, which are asked to provide input to protocol development and minimize harm but also to advance research goals by facilitating participant recruitment 12 – 14 . Other challenges include limited understanding of health research and monetary expectations among CAB members, dependence on researchers for finances, and lack of authority to influence decisions concerning research 15 – 18 .…”

Section: Introductionmentioning

confidence: 99%

Strengthening ethical community engagement in contemporary Malawi

Nyirenda¹,

Gooding²,

Sambakunsi³

et al. 2019

Wellcome Open Res

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Although community engagement is increasingly promoted in global health research to improve ethical research practice, there is sometimes a disconnect between the broader moral ambitions for community engagement in the literature and guidelines on the one hand and its rather narrower practical application in health research on the other. In practice, less attention is paid to engaging communities for the ‘intrinsic’ value of showing respect and ensuring inclusive participation of community partners in research design. Rather, more attention is paid to the use of community engagement for ‘instrumental’ purposes to improve community understanding of research and ensure successful study implementation. Against this backdrop, we reviewed the literature and engaged various research stakeholders at a workshop to discuss ways of strengthening ethical engagement of communities and to develop context-relevant guidelines for community engagement in health research in Malawi.

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“…CAB activities included training sessions, periodic meetings, focus group discussions, site visits, conference calls, and group emails. Ten articles described training sessions for CAB members, including technical medical expertise trainings, CAB and community leadership skills improvement sessions, protocol specific training, report writing guidance, and protection of research participants, which typically lasted several days and were uniformly conducted before CABs began operating in their advisory capacity [13, 18, 26, 33]. Most CAB members had no formal medical or public health training, and consequently organizing teams (e.g.…”

Section: Resultsmentioning

confidence: 99%

“…Most CAB members had no formal medical or public health training, and consequently organizing teams (e.g. research teams, staff from professional training institutions, and universities) tended to focus training on improving members’ medical knowledge as well as addressing research goals and ethics [13, 18, 33, 38, 45, 48, 49]. Once formed, most CABs held periodic meetings, with meeting frequently ranging from weekly to monthly to quarterly to yearly.…”

Section: Resultsmentioning

confidence: 99%

Forming and implementing community advisory boards in low- and middle-income countries: a scoping review

et al. 2019

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Background Community advisory boards (CABs) have expanded beyond high-income countries (HICs) and play an increasing role in low- and middle-income country (LMIC) research. Much research has examined CABs in HICs, but less is known about CABs in LMICs. The purposes of this scoping review are to examine the creation and implementation of CABs in LMICs, including identifying frequently reported challenges, and to discuss implications for research ethics. Methods We searched five databases (PubMed, Embase, Global Health, Scopus, and Google Scholar) for publications describing or evaluating CABs in LMICs. Two researchers independently reviewed articles for inclusion. Data related to the following aspects of CABs were extracted from included publications: time, country, financial support, research focus, responsibilities, and challenges. Thematic analyses were used to summarize textual data describing challenges. Results Our search yielded 2005 citations, 83 of which were deemed eligible for inclusion. Most studies (65) were published between 2010 and 2017. Upper-middle-income countries were more likely to have studies describing CABs, with South Africa (17), China (8), and Thailand (7) having the greatest numbers. The United States National Institutes of Health was the main source of financial support for CABs. Many CABs (53/88, 60%) focused on HIV research. Thirty-four studies reported how CABs influenced the informed consent process for clinical trials or other aspects of research ethics. CAB responsibilities were related to clinical trials, including reviewing study protocols, educating local communities about research activities, and promoting the ethical conduct of research. Challenges faced by CABs included the following: incomplete ethical regulations and guidance; limited knowledge of science among members of communities and CABs; unstable and unbalanced power relationships between researchers and local communities; poor CAB management, including lack of formal participation structures and absence of CAB leadership; competing demands for time that limited participation in CAB activities; and language barriers between research staff and community members. Several challenges reflected shortcomings within the research team. Conclusions Our findings examine the formation and implementation of CABs in LMICs and identify several ethical challenges. These findings suggest the need for further ethics training among CAB members and researchers in LMICs.

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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

Cited by 35 publications

References 2 publications

Structural coercion in the context of community engagement in global health research conducted in a low resource setting in Africa

Structural coercion in the context of community engagement in global health research conducted in a low resource setting in Africa

Strengthening ethical community engagement in contemporary Malawi

Forming and implementing community advisory boards in low- and middle-income countries: a scoping review

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