In Chirumanzu and Shurugwi, two of Zimbabwe’s rural districts, researchers are examining the impact of household sanitation and hygiene interventions on childhood growth and anaemia.
The trial involves engaging pregnant women periodically with interventions such as text messages on hygiene, and cooking locally nutritious meals with the mothers until their children become 18 months old.
But some residents in the communities where the trial is taking place see some of the actions of the researchers as unusual, according to Naume Viola Tavengwa, head of communication and intervention department at the Zvitambo Institute for Maternal Child Health Research, a local organisation involved in the study.
“All the specimens — saliva, stools and blood —are collected at home, so the communities do not understand why such activities that are expected to be done in hospitals are taking place at home,” says Tavengwa. “We use community-based workers known to the people to engage them, but still there are misconceptions about the study.”
“If we see results that are useful to community residents in a way, we create discussions around them with the communities.”
Rhian Twine, Medical Research Council,South Africa
Experts believe that dealing with misconceptions of health research in trial communities is just one of many cases that present as challenges or opportunities for engaging community residents.
Why engage communities?
An important consideration is to be honest in determining the reason for engaging communities with health research, says Rhian Twine, head of community engagement office at the South Africa-based Medical Research Council and Wits Rural Public Health and Health Transitions Research Unit.
She asks: “Are we engaging communities because we want to get our research findings out or it is because we want to make sure that people come out to us when we go there again?”
According to Twine, community engagement provides a way to feedback research to the community. “If we see results that are useful to community residentsin a way, we create discussions around them with the communities,” Twine tells SciDev.Net.
Dorcas Kamuya, a postdoctoral researcher in ethics and community engagement at the KEMRI Wellcome Trust in Kenya and the Ethox Centre at the UK-based Oxford University, adds that researchers should value community engagement.
“People need to look at community engagement not as an add-on, but as a matter of how we humans behave. When you go somewhere, you tell people who you are and why you are there. Researchers need to see it is part of human relations,” Kamuya explains.
Challenges and ethical dilemmas
According to Kamuya, who has been studying ethics and community engagement in research projects in Kenya, Malawi, Thailand, South Africa and Vietnam, which are funded by the UK-based Wellcome Trust, community engagement has a way of unpacking issues that researchers never knew or thought about that might present ethical challenges.
When researchers are recruiting people into a study, they talk about confidentiality and anonymity, she says. But when community residents can easily identify people joining studies in the communities, the issue of confidentiality and anonymity just fall through the roof.
“People need to look at community engagement not as an add-on, but as a matter of how we humans behave.”
Dorcas Kamuya, KEMRI Wellcome Trust
“If they are going to research about sensitive issues, such as men who have sex with men, then researchers have got to know about what may happen to participants and how they can be protected in the community while still engaging with the others,” Kamuya explains.
For Twine, an ethical challenge is that in a longitudinal research site, as researchers engage community members with research findings, there is a likelihood that the people may change their behaviours, thus making those communities not representative of others in the rest of the country or in Sub-Saharan Africa.
Getting support from senior managers in health research organisations to promote community engagement is also a major challenge, Twine and Kamuya add.
Opportunities for engagement
The role of funders and local champions could present as opportunities for promoting community engagement, experts say.
“If you want to change the way people think about community engagement, it’s important to have people within the research team championing it. I find it very powerful in changing institutional way of thinking,” says Kamuya, advising that biomedical researchers who have minimal interactions with humans, andare often based in their laboratories should be encouraged to engage with communities.
Researchers willing to try new ideas and methods of community engagement, and who are willing to take risks could enhance the practice, she adds, noting a potential benefit as well: “My experience is that when researchers do that, they become willing to consult communities about things they thought they know, but know little about, and they become more sensitive about the context in which they do their research.”
Helen Latchem,a member of the engaging science team at the Wellcome Trust, adds that finding time to do community engagement is often difficult for researchers, especially because there is no incentive to do so.
Latchem adds that it is important to recognise community engagement as a career or a profession, noting that the Wellcome Trust provides funding opportunities for researchers to engage communities.
“There are amazing professionals working in developing countries in Sub-Saharan Africa and South East Asia and I think they should be recognised,” saysLatchem, who leads the Wellcome Trust’s international engagement work.
According to Latchem, there is a real appetite for communities in many developing countries to be involved in community engagement projects.
“Some of the big infectious diseases touch everybody on a daily basis, and that means people have personal and emotional response to some of these challenges, and is something they want to know and need to know, and I think that is something unique to developing countries,” Latchem explains.
This article has been produced by SciDev.Net's Sub-Saharan Africa desk.