Engaging Communities to Strengthen Research Ethics in Low‐Income Settings: Selection and Perceptions of Members of a Network of Representatives in Coastal <scp>K</scp>enya

Kamuya, Dorcas; Marsh, Vicki; Kombe, Francis; Geissler, Paul Wenzel; Molyneux, Sassy

doi:10.1111/dewb.12014

Cited by 85 publications

(107 citation statements)

References 29 publications

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“…This included information sharing sessions with key stakeholders - hospital administration, health facility staff, local administrative leaders (chiefs and assistant chiefs), Pwani-University Administration, and with KEMRI-Community Representatives – a network of about 220 people elected by the local residents to consult on research activities 15 . Barazas 2 were used to provide general information about the study to the population in the three sub-locations where the Kilifi participants were recruited from.…”

Section: Methodsmentioning

confidence: 99%

Ethical considerations in Controlled Human Malaria Infection studies in low resource settings: Experiences and perceptions of study participants in a malaria Challenge study in Kenya

Njue¹,

Njuguna²,

Kapulu³

et al. 2018

Wellcome Open Res

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Background: The range and amount of volunteer infection studies, known as Controlled Human Infection Model (CHMI) studies, in Low-Middle Income Countries (LMICs) is increasing with rapid technological advancement, world-class laboratory facilities and increasing capacity development initiatives. However, the ethical issues these studies present in LMICs have not been empirically studied. We present findings of a descriptive social science study nested within a malaria volunteer infection study, on-going at the time of writing, at the KEMRI-Wellcome Trust Research Programme (KWTRP) on the Kenyan Coast. Methods: The study included non-participant observations, five group discussions with more than half of the CHMI study participants, two in-depth interviews with study team members, and an exit questionnaire administered to the participants. Results: Participants understood the key elements of the study, including that they would be deliberately infected with malaria parasites and may get malaria as a result, there would be regular blood draws, and they would spend up to 24 days in a residence facility away from their homes. The greatest motivation for participation was the monetary compensation of 20 USD per overnight stay given as a lump-sum at the end of their residency stay. Also appreciated were the health screening tests prior to enrolment and the positive relations with the study team. Concerns raised included the amount and regularity of blood draws experienced, and concerns that this type of research may feed into on-going rumours about research generally. Conclusion: With the increasing range and number of CHMI studies being conducted in LMICs, current ethical guidance for more than minimal risk studies is inadequate. This study highlights some of the ethical issues that could emerge in these settings, emphasizing the heavy responsibility placed on research review and regulatory systems, researchers and funders, as well as the importance of carefully tailored community engagement and consent processes.

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Section: Methodsmentioning

confidence: 99%

Ethical considerations in Controlled Human Malaria Infection studies in low resource settings: Experiences and perceptions of study participants in a malaria Challenge study in Kenya

Njue¹,

Njuguna²,

Kapulu³

et al. 2018

Wellcome Open Res

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“…These include relationship dilemmas and other stressors on fieldworkers, who are often seen as ‘gatekeepers’ to resources or resented for their paid research positions and face raised expectations from study participants and local communities (Molyneux et al, 2009; Kamuya et al, 2013; Kamuya et al, 2014). Suggestions for supporting frontline research workers and strengthening human subjects protection include providing customized ethics training that draws upon past challenges of fieldworkers working in similar contexts to incorporate local examples, role-play, and immediate feedback (Kamuya et al, 2014; Kostick et al, 2014).…”

Section: Discussionmentioning

confidence: 99%

Supporting the role of community members employed as research staff: Perspectives of community researchers working in addiction research

True¹,

Alexander

Fisher

2017

Social Science & Medicine

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Community researchers are laypersons who conduct research activities in their own communities. In addiction and HIV research, community researchers are valued for their insider status and knowledge. At the same time, their presence on the research team raises concerns about coercion and confidentiality when community researchers and participants know each other personally, and the work of navigating between the worlds of research and community leads to moral distress and burnout for some community researchers. In this paper, we draw upon the concept of ‘moral experience’ to explore the local moral worlds of community researchers in the context of addiction research. In February and March, 2010, we conducted focus groups with 36 community researchers employed on community-based addiction studies in the United States to elicit perspectives on ethical and moral challenges they face in their work and insights on best practices to support their role in research. Community researchers described how their values were realized or thwarted in the context of research, and their strategies for coping with shifting identities and competing priorities. They delineated how their knowledge could be used to inform development of research protocols and help principal investigators build and maintain trust with the community researchers on their teams. Our findings contribute to current understandings of the moral experiences of community members employed in research, and inform policies and practices for the growing field of community-engaged research. Funders, research organizations, and research ethics boards should develop guidelines and standards to ensure studies have key resources in place to support community researchers and ensure quality and integrity of community-engaged work. Investigators who work with community researchers should ensure channels for frontline staff to provide input on research protocols and to create an atmosphere where challenges and concerns can be openly and safely discussed.

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“…Compared to the model of Community Advisory Boards (CABs), we were able to achieve broader representation of the community. Our methodology ensured that minority groups and those who have less hierarchy in a community were heard, as we were able to create specific groups for women or other vulnerable groups [20,21]. It also allowed direct consultation with groups of community leaders [21].…”

Section: Discussionmentioning

confidence: 99%

“…Our methodology ensured that minority groups and those who have less hierarchy in a community were heard, as we were able to create specific groups for women or other vulnerable groups [20,21]. It also allowed direct consultation with groups of community leaders [21]. It avoided a known tension in CABs between their role in protecting the community and advancing the research [22], as participants had no obligation toward the research itself.…”

Section: Discussionmentioning

confidence: 99%

“Losing the tombola”: a case study describing the use of community consultation in designing the study protocol for a randomised controlled trial of a mental health intervention in two conflict-affected regions

et al. 2015

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BackgroundCommunity consultation is increasingly recommended, and in some cases, required by ethical review boards for research that involves higher levels of ethical risk such as international research and research with vulnerable populations. In designing a randomised control trial of a mental health intervention using a wait list control, we consulted the community where the research would be undertaken prior to finalising the study protocol. The study sites were two conflict-affected locations: Grozny in the Chechen Republic and Kitchanga in eastern Democratic Republic of Congo.MethodsGroup discussions with a range of community members were held in both study sites. Facilitators used a prepared set of questions to guide the discussions and to solicit feedback on the value of the research as well as on the study design. Specific questions were asked about enablers and barriers to participation in the research.ResultsSix groups were held in Grozny and thirteen in Kitchanga. The majority of individuals and groups consulted supported the research, and understood the purpose. In Grozny, the main concern raised was the length of the waiting period. Barriers to both waiting and returning for follow up were identified. In Kitchanga, there was a strong reaction against the wait list control and against randomisation. The consultations provided information on unanticipated harms to the community, allowing changes to the study design to mitigate these harms and increase acceptability of the study. It also served to inform the community of the study, and through engaging with them early, helped promote legitimacy and joint responsibility.ConclusionCommunity consultation prior to finalising the study design for a mental health intervention trial in two humanitarian settings proved feasible. Our experience reinforces the importance of community consultation before the study design is finalised and the importance of broad consultation that includes both community leaders and the potential study participants.Electronic supplementary materialThe online version of this article (doi:10.1186/s12910-015-0032-x) contains supplementary material, which is available to authorized users.

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Engaging Communities to Strengthen Research Ethics in Low‐Income Settings: Selection and Perceptions of Members of a Network of Representatives in Coastal Kenya

Abstract: There is wide agreement that community engagement is important for many research types and settings, often including interaction with

Cited by 85 publications

References 29 publications

Ethical considerations in Controlled Human Malaria Infection studies in low resource settings: Experiences and perceptions of study participants in a malaria Challenge study in Kenya

Ethical considerations in Controlled Human Malaria Infection studies in low resource settings: Experiences and perceptions of study participants in a malaria Challenge study in Kenya

Supporting the role of community members employed as research staff: Perspectives of community researchers working in addiction research

“Losing the tombola”: a case study describing the use of community consultation in designing the study protocol for a randomised controlled trial of a mental health intervention in two conflict-affected regions

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