Handling myths and Misconceptions in health research

Its 2004 in the afternoon at certain primary school in Thyolo district. An organization drives up to the school to donate bilharzia drugs. The moment children spot the vehicle they all turn into frenzy, running away from the classrooms to their homes. Reason? These people have come to suck their blood, some would inform their parents to go and rescue the "less fortunate" who did not manage to escape because a class was in session or something held them up.

It may sound fictional and pretty much exaggerated but if you were there in the early 2000s, blood sucking allegedly by people sent by organizations but authorized by government rumors was widely spread. Yes, it even got the attention of wire services and world media giants including the New York Times.

"Rumors that the government of that landlocked southern African country was colluding with vampires to collect human blood in exchange for food sent terrified villagers fleeing, wire services reported last week. A suspected vampire helper was stoned or beaten to death; three priests were attacked; and a foreign aid encampment identified as vampire headquarters was destroyed," was the lead New York Times carried then in 2002. 
http://www.nytimes.com/2002/12/29/weekinreview/a-fear-of-vampires-can-mask-a-fear-of-something-much-worse.htm

Of course, people realized later that there was nothing like blood sucking scheme going on, these were innocent people carrying out demographic health surveys, clinical trials, non - governmental organizations carrying out routine projects and so on and so forth.

This however points to the challenges faced by researchers in Malawi, some of the reasons being myths that have been deep rooted in communities but upon realizing that communities’ participation in health research is crucial, one has to effectively engage them so that the gap that exist is narrowed.

"Participants' refusal to take part in research is an unpleasant experience that investigators face," reads study published in Medical Journal of Malawi who conducted a study into the reasons why people refuse to participate in biomedical research resources from low income society's perspective.

 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3345674/.Among the findings were superstition and failure by researchers to conduct proper community engagement. One participant was quoted as saying “they should first inform the leaders of the community like the chief and when they accept, the people would also accept the research. But if they just come from wherever they come from and start the research without involving our community leaders, people will not accept it......."The study further learnt that people were afraid that more blood will be drawn from their bodies which the researchers would later on use for their benefit.

Engaging the communities intensely it's paramount if the study it's to register more participants and also if there will be issues of sample drawing   such as blood, urine, stool and others. There are so many things that people in the rural areas many not understand when such samples are requested especially from the under-fives

One way to avoid the above challenges it's to use a participatory approach, put it another way, the researchers or whoever is engaging the community should not only dictate things but give them chance to speak out, ask them questions to ensure you are on equal footing and also requesting them to suggest ways on how best they can understand the study. For example people in communities spend a lot of time gardening, or doing some scale business, therefore asking them time that they will be comfortable to schedule a meeting which can help build a good rapport. Moreover, forming committees to act as their representatives would also assist in helping communities further understand and participate in studies for a good cause. On the other hand collaborating with their community leaders people will cast out their doubts because they are the main gate keepers of the communities. It is therefore very important that researchers follow a collect path when conducting studies in communities; this will help to avoid misconceptions that are so common in Malawi. 

Following a trail of Fieldworkers in Malawi

My personal  story to get involved in Medical research started in the year 2007 when i was recruited  to be a fieldworker (Staff members who have a face to face interaction with study participants in research) for one of  the studies in Blantyre, Malawi. Having no any medical background i found it very hard to  establish myself into the principles  of conducting research, lack enough my team was so supportive such that after a year i started  developing  interest to learn more about  Good Clinical Practice, a course which each  research staff undergoes at the beginning of his/ her involvement in research.  After my involvement in a number of studies i was successfully offered a position which allowed me to  practice community engagement but all the same i still had a passion for my previous job; i still cherished the memories i reserved in my mind while working as a fieldworker.  I loved riding motorbikes, spending more time in the field other than in the office, i enjoyed interacting with  community people in the localities some of them inviting me  for  lunch while some of them were  pleading with me to have at least a present from them.

I still remember some of the days soaked in rain trying to meet my targets for the day getting home tired  feeling like not waking  the next day but the job was already part of me, i had no choice. Having such memories and experiences in mind, an opportunity showed up  last year in 2014; together with my supervisors we thought of applying for funding to dip deep into the issues surrounding fieldworkers in Malawi, we developed the interest to explore their experiences and address the challenges which they face in their daily work. After a lot of team work we managed to secure funding to to conduct a qualitative study on Fieldworkers.

Elvis Moyo - Presenting a poster for Fieldworkers in Vietnam

Basing on my experience and of course  on the studies that have been conducted by well known researchers, fieldworkers face a lot of challenges, this group of staff are neglected yet the play crucial role in research. one the their roles is being agents of community engagement for the respective  studies involved. I believe  this project will stimulate the way institutions manage and support the cadre in the country. 

Research benefits for study participants and Communities

Ask prospective study participants or the general public whether one should be paid for participating in health research, the expectation from most of them is that  a yes, they indeed expect a payment or more benefits.  Most of them will justify their expectation lamenting that they set aside time for their participation and that need to be compensated. In other cases I have heard some participants saying that researchers benefit a lot from their participation, they get a lot of money and yet they request local people that for their voluntary participation. My work involves engaging communities where eligible participants reside. Using various channels of engagement one of the principles that is upheld is to give as much information as we can about a specific study that is starting in the targeted areas. Among so many questions that are filed during the engagement process one of them is centered on the issue of benefits; “what will our community benefit from the study” or what will the participants benefit in the study”.

On the part scholars, researchers and scientists the answer is not as straightforward as it seems. Mostly, the question has been whether paying people to participate in a study is ethical and just like any issue of ethics, there will always be different if not opposing schools of thoughts, one thing that is clear though is that the ethics of research do not allow or authorize giving more incentives to participants as this could eventually coerce or exploit people or communities to take part in the studies. As The Research Guidebook stipulates, "no persuasion or pressure of any kind should be put on participants."
http://www.ethicsguidebook.ac.uk/Are-you-paying-participants-or-using-lotteries-or-prize-draws-192. The report highlights that those for paying participants argue that it encourages responsiveness though it warns this 'Payment should not over-ride the principles of freely given and fully informed consent.'

And that’s another challenge since taking part in health research must be done on voluntary basis. There is no binding such that participants can withdraw their consent from a study whenever they feel they no longer want like to participate. By paying, you expect to get back services and this can never work in medical research. The participants are given freedom of choice.

Some argues however that small amount of money can be given as token of appreciation for the time the participants have rendered of which this is the practice in many studies that are currently conducted in many circles though the definition of an incentive would vary from one area to another, for instance, what is small in UK or South Africa can never be small in Malawi. In a country like Malawi where majority lives on less than a dollar a day, giving out ten-dollars as 'token of appreciation' can still be deemed as payment in spite of you stressing otherwise. It is therefore important to understand and consider a cultural and social context where a study is conducted.

But then with my experience in community engagement I still feel discontented with benefits given to participants in the studies and even in the communities where studies are conducted. I believe participants and communities still expect more than what they get, they expect direct benefits other than the answer which they are given that the studies will contribute the health policies of the country. Imagine studies are conducted in a specific catchment area for more than 5 years and the answer to their questions on benefits is just the same yet other developmental organizations in the same area are producing direct benefits and the communities are able to appreciate; how would they rate health research? Are they not going to give up and conclude researchers are there to use them? From a community engagement perspective, I feel its high time researchers started thinking of something like a social responsibility especially for studies that have a demarked recruitment area so that probably at the end of their recruitment they should contribute something in the area. Recently in some communities where we have been working for a long time now, there was a request for support to construct an under-five clinic for the surrounding villages. The request came while a study which is conducted in the villages is targeting under-fives and it still has a year ahead to wrap up recruitment. When the request came to my department it took us time to resolve it because it was such a huge dilemma we have ever faced, to date we have not come up with a final response to the community leaders who are patiently waiting. Several issues need to be considered before we draw a final conclusion and a ball is in our hands as a community engagement department, so this issue gave me a thought that as researchers we need to think of direct benefits for the communities that are involved in studies and at the same time try to balance with ethics of research. 

The role of Community leaders in community engagement

Recently while travelling to Mulanje on a personal trip I overhead people arguing whether traditional leaders (chiefs) in the country are still necessary. People were debating following a recent call by some quarters in the country to end chieftainships in the urban areas. Immediately my mind was drawn to community engagement which is my area of interest, I thought of the role that   community leaders play when we engage communities about health research in both urban and rural communities.

I thought about roles that traditional chiefs play in medical research and I realized how difficult it would be working with the communities without community leaders who are the gate keepers, these leaders play a vital role in as far as mobilizing  communities for social, cultural and developmental gatherings are concerned. Community leaders ensure that messages about specific meetings are communicated using different channels including call boys who go round the villages prior to the actual day of the meeting. The practice is common in rural areas where there is a close net relationship among community members;   when any organization would like to engage a community no one takes the responsibility of welcoming the organization except the chief of the village who is well respected and his authority is upheld. It relies in his/ her hand to either welcome the organization or close the doors.

In fact, people in the rural areas mostly do not easily corporate as they are mostly busy with work and business however with a call from their chief of the village they try as much as possible to at least honor the meeting ad listen to what the organizations are about to say. This does not mean that the chief dictates or compromise their autonomy to participate in research, the chief’s authority only help in mobilizing communities and the decision to either participate or not relies on individuals.  One can therefore infer that chiefs play a pertinent role not only in assisting in mobilizing people during community engagement information dissemination functions but also making sure that there is a standard that has to be followed in the communities. The same case even in other areas that matter in the villages; chiefs help to make sure that there is a cultural standard in the villages. Every village is known by its standard, norms, values and other practices, in most villages it is the responsibility of the chiefs to make sure that all this is followed. Of course the world is moving on politically, socially and technologically  and chiefs may not seem to have as much impact as it used to be but in science  and health research, there role need to be recognized. They are what they are, the pivot for mobilizing and sensitizing people.

In one of the villages that I have worked when we were conducting a study, there was a misunderstanding on the side of the husband when he heard that his wife consented to participate. The misunderstanding got worse when he heard that the wife’s transport was reimbursed after she visited our clinic after a scheduled visit. His wife called the office and part of our team visited the village, by that time the news had already been reported to the Group Village Headman of the area who previously invited us to conduct an awareness meeting in his area. He summoned the husband together with his wife in our presence; he was available as a third party but not accusing the husband for his misunderstanding. Following our procedure in handling such matters the husband eventually understood what was going on and apologized for the misunderstanding.   The scenario may seem so petty but looking at the chiefs’ intervention it was very easy to handle it. In summary chiefs play a vital role in community engagement about health research and it is very important not by pass them rather they should be considered as stakeholders in every targeted catchment area.