TRAINING CASE STUDIES
COMMUNITY AND FAMILY RELATIONSHIPS Case studies
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COMMUNITY AND FAMILY
RELATIONSHIPS
CASE STUDIES
‘Community engagement’ is an increasingly important priority for research organizations and funders. Colonial medical research in Africa assumed a paternalistic, dogmatic role for researchers (both overseas and national), with communities cast as passive bodies to be studied and healed, in comparison with the more consultative role aimed for today. The concept of ‘informed consent’, let alone ‘community consent’, did not exist.
Today global health researchers are exploring different permutations of community consultation and
engagement. Some research stations set up community advisory boards or groups of elected representatives from different groups within communities. Others hold open community meetings to discuss, explain, and disseminate their research. Sometimes community members are invited to tour research stations, interview new researchers, and comment directly on protocols in their early stages.
Underlying these community engagement activities – and our collection of community relationships stories – are questions like: how do we best engage, work with and communicate our intentions and findings to different communities? How much involvement in research agenda setting and planning should – and can – communities actually have? Who ‘owns’ research? And what kind of meaningful understanding can there be between scientists and local communities, when the two groups sometimes see and experience the world differently?
FURTHER READING
Geissler, P.W. and Pool, R. (2006) Editorial: Popular concerns about medical research projects in sub- Saharan Africa – a critical voice in debates about medical research ethics. Tropical Medicine & International Health 11(7), 975– 982.
Angweniyi, V. et al. (2014) Complex realities: community engagement for a paediatric randomized controlled malaria vaccine trial in Kilifi, Kenya. Trials 15, 65.
Aellah, G. and Geissler, P.W (2016) Seeking Exposure: conversions of scientific knowledge in an African city. Journal of Modern African Studies.
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An important aspect of community engagement involves understanding the ways power and authority operate in particular communities. Who has the authority to make decisions about research participation? To whom do individuals look to guide them? Religious leaders? Clan leaders? Opinion leaders? Local government? In many African contexts, decision-making is not necessarily done at an individual level. In response some research projects obtain consent for research participation from community leaders or household heads. What are the
ramifications for this mode of consent for research and research ethics? What role does gender play in decision-making?
Another major concern in the relationship between researchers and communities is the destructive power of rumours about medical research. Rumours about blood and organ stealing, about birth control as a form of sterilization (including the association of bed-nets with infertility), and about the deliberate spreading of disease (for example through vaccines or holes in condoms) are common in sub-Saharan Africa. Rumours can have devastating effects on the success of projects and cause considerable anxiety for researchers. We agree that rumours need to be taken seriously and we have included several case studies on rumours here.
Our stories on rumour have the same underlying message: it is not particularly helpful to think about rumours in contrast to truth. Looking at rumours in this way makes them easy to dismiss as due to insufficient knowledge, or a lack of education or ‘enlightened’ modern thinking. However, as every researcher knows, simply increasing knowledge about the aims and practices of research in a community does not always lead to a reduction in rumour. This is because to understand rumours we need to look at them in the context of social relations, which are produced and changed by medical research. It is much more productive to think about rumour as a tool people use to express more nebulous anxieties about socio-economic conditions, and we need to take these anxieties seriously. Several of the case studies in this section explore this in more detail.
COMMUNITY AND FAMILY RELATIONSHIPS FACILITATOR’S NOTES Everybody’s corrupt
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CORRUPT:
UNDERSTANDING SUSPICION IN
MEDICAL RESEARCH
FACILITATOR’S NOTES
This case is about a misunderstanding which arises when Community Advisory Board (CAB) members are paid their regular travel reimbursement in a different way after a meeting. CAB members suspect that the research staff are pocketing extra cash, and are not surprised by this, because they view corruption as common in all walks of life. In fact, what happened was not corruption but an administrative change which was not communicated effectively. What is interesting about this case study is that when CAB members become aware of a change in routine procedures, they immediately suspect foul play. Prevailing corruption across different sectors of society feeds these suspicions, and instead of asking for an explanation, CAB members feel disappointed but not surprised. This case shows that
sometimes the administrative requirements of research (in this case, to do with providing appropriate information according to set budgets) can be misinterpreted ‘in the field’ as
reflecting something sinister, based on prior experiences of corruption. In your discussions you could focus on how these kinds of misinterpretations could be prevented, and also think about diverse understandings of travel reimbursements/sitting allowances.
You can also use this story as a jumping-off point to address more general issues of corruption in research which your group may have experienced. This story is about perceptions of corruption. But this could lead to a more general discussion of what corruption is. Encourage the group to discuss different
LEARNING
OBJECTIVE
To reflect on situations where simple administrative practices in research may lead to suspicion in the communityKEYWORDS
Corruption Community engagement Money RumourCOMMUNITY AND FAMILY RELATIONSHIPS FACILITATOR’S NOTES Everybody’s corrupt
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understandings of what corruption means, what forms ‘real’ corruption might take, who might be involved, the challenges involved in speaking about it, and what practices might offer the most effective safeguards in your specific research settings.
COMMUNITY AND FAMILY RELATIONSHIPS HANDOUT Everybody’s corrupt
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