Community Engagement in urban communities

Often times when planning for community engagement we prioritize engaging rural communities which are believed to be miles away from science and that their understanding is far from that of researchers. It is believed or observed that  most members are illiterate and not exposed to issues within science. Urban communities are believed to be literate and knowledgeable. Being a community engagement practitioner i have always been having the same perception over the years until recently when i was challenged upon hearing a certain conversation at a funeral ceremony; i joined a group of people who were having a conversation while attending the same funeral. Of course the discussion started from a different angle until it got to one of the entomological studies conducted by one of research institutions i know very and at times collaborate with them. One of the people chatting narratively stated that the organization recruits its staff and one of the key responsibilities they are told is to feed their blood to mosquitoes tamed for their projects at Machinga District Hospital, located in Liwonde township, approximately 110  kilometers from Blantyre. He highlighted that each study staff has his/her turn to go in the cages to insert his hands so that mosquitoes can feed on the blood. The statement was shocked many people who were listening.......... In mind came a question; where did they get this kind of information? Did the study team engage people around this area? Several questions ran in my mind but they centered on the status of these people who enjoyed sharing this story which would not have any accuracy in it but then its just a heresy. It might have originated from the fact that the study team did not engage communities around their recruitment area, thus including people working at the hospital; clinicians, nurses and others. These are the ones taking the stories of no evidence very far.

Basing on experience, it is true that most research institutions plan to engage  rural communities as opposed to  urban communities, this is because of the wrong perception that most  residents are more educated  such that their understanding is more advanced than those in rural communities, eventually this create misconceptions.  critically analyzing a story above, you are a reader would think  can happen that educated people as per se would be thinking from such a perspective however it is the reality. Misconceptions about science might be everywhere regardless of  the level of education, geographical location or any community targeted, it is therefore significant to plan to engage each and every community, whether rural or urban, in cities or in villages, educated communities or not educated and also think of different professionals such as nurses, lawyers, teachers, students, vendors, farmers, taxi drivers  and others. 

There is need to come up with novel ways of engaging relevant communities especially ways that promote dialogue between researchers/ institutions and communities. There should be platforms where information  is made available for public  interest. Usually science is always difficult to follow hence the need  the need to have community engagement where science is broken into a simple language. Recent activities there was a community engagement meeting for one of the studies in some villages in Chikwawa and i was demonstrating to the members the amount of a blood sample which will be collected from participants. Before my explanation i asked about their knowledge; i asked them to tell me what they know about  EDTA tube and its use most of them  responded that  they just see it at the hospital when  doctors are collecting  blood samples from their arm but  they never have a clear understanding. This entails that the public see and know about most procedures which are usually done in the hospital but  what they do not know is what and why the procedures are done, all this happens because of luck of information. such misunderstandings can be in any setting including in  urban areas, therefore there is need to take initiatives to deliberately plan community engagement activities that will include  all  communities.

The benefits of community engagement in medical research

Presenting a community engagement plan containing various activities for specific studies  is   not as easy as one would expect, especially when it comes to a point of presenting  expenses attached to the activities. Most Principal Investigators are always keen not to argue with you when shedding more light about planned activities so that communities are more aware about their study; they are always interested to hear more about the expenditures that are going to be made and how  that will  contribute to the outcome of their study. Well requesting more information about the expenditure is not a problem but then the time frame that it takes to approve the budget for the activities is where my interest lies.

From my experience I have observed that most Principal Investigators care about results that  are brought on the table  not what  communities are entitled to know about the their study or what  they will say about it. Most researchers do not take community engagement as something worth investing their resources. Wellcome Trust  which is one of the funding organization  encourages  researchers to engage  communities where eligible participants come from, this is also supported by a  global movement to promote community/ public engagement  in  research.

A researcher attending one of the community engagement meetings

 Community engagement helps to shape various relationships; thus between researchers and local communities, study participants and study team working in the area, community leaders and  researchers not forgetting  a relationship that exist between researchers and other stakeholders operating in the same catchment area .  Imagine a researcher goes in a community to conduct study procedures without even having an interaction with the local leaders, other stakeholders and the entire community, what would be the reaction of the communities towards such a practice? Every community has its own norms and values which researchers need to observe and adopt some of them.  Therefore through community engagement such relationships are strengthened.

Apart from this community engagement practice also ensures that there is mutual understanding between these different groups especially eligible participants.    Conducting research in developing countries like Malawi   is good when there is mutual understanding which leads to trust. Communities need to know at least most information about the studies that are conducted in their area; they need to be represented through representatives. Researchers should aim at ensuring that such a relationship is established at all cost.  Previously before community engagement was promoted in Malawi most communities were denied an opportunity to understand medical research and why their participation matter a lot, as such there were a lot of misconceptions associated with research; some said researchers draw blood and sell it for their own benefits, other attributed other deaths to research procedures,   in worst case scenarios field teams were not welcomed in other villages because they were considered Satanists. All this was because there was no any mutual understanding.

On the other hand community engagement helps to move towards the autonomy of a community. In developing countries   most people are not oriented on their rights such that they have  few words to say whenever approached  to participate in a study, some  of them don’t know how to differentiate general  treatment from a study procedure as such they accept  to participate out of ignorance. Community engagement practice help to empower communities to have a say in research studies, the same with eligible participants.

Apart from this through community engagement we can share with the communities the relevance of studies into their lives.  In most cases studies that are conducted are planned by researchers and then they are just implemented in a targeted area without sourcing the views of the local communities. Engaging communities at the beginning of the study (thus during protocol development and at the beginning of studies helps to incorporate their views   despite that they ideas may not be as   professional as researchers would expect. In summary Community Engagement helps to ensure that there is mutual understanding between researchers and communities where research is conducted hence the need to have the process included in the  implementation plan of a protocol.

Using Community Engagement as way to change health behavior

Earlier this week I escorted a friend to visit a patient at one of our local hospitals,   in the course of our chat with him (the patient) he started sharing a story about a child who died upon reaching Kakoma Health center in Chikwawa district. It was narrated that the mother accompanied by other relatives arrived at the facility during dawn; by that time the child was very dehydrated and also anemic. After observing such critical vital signs he decided to invite his colleague to help providing treatment to the child. I listened to the story with keen interest considering that I knew the area which is within a catchment area where many organizations conduct their activities. Our patient friend proceeded saying that he and his friend couldn’t do much to assist the child because it was just a health center with few resources within their reach and apart from that the mother and relatives did not  rush with the child to the hospital while they started observing the signs.  It was sad to hear at the end that the child did not last longer, he couldn’t battle with the sickness which was suspected to be malaria. The story would have a good ending only if the mother had rushed her at the health center.

There are many lives that are lost because of lack of good treatment seeking behavior. World Health Organization highlights that in Malawi; the major causes of infant deaths are pneumonia (23%), underweight (22%), diarrheal diseases (18%) and malaria (14%). After the first year of life, infections from the communicable childhood diseases of tetanus, whooping cough, diphtheria, poliomyelitis and measles are the major cause of death in children. In 2010 Infant mortality rate was estimated at 66 per 1,000 live births and the rate is expected to decline to as low as 41 deaths per 1000 live births by 2015.  From experience I believe community engagement can help to make a difference on the matter, Chikwawa comprises of spatial communities which are also far from health centers and apart from that many people have not yet adopted the practice of seeking treatment at the centers. This is due to various reasons. With community engagement we can bring change in these communities by telling them more about diseases that are locally costing many lives,   a two way community engagement would create a platform for them to ask as many questions as they can. The activities would include community meetings which have been tried and have proved to be successful, another way which is currently promoted is Theater for Development and it’s promising to make a difference as well. Organization should   start planning to invest in behavior change projects that save lives including children who do not deserve to die in this simple way while we know their live would be saved. Engaging groups such as women, men and community leaders would help to bring change in communities about their health eventually mortality would be reduced. Community engagement is a strong value and fundamental practice of public health. The importance of engaging the community is grounded in the belief that the public has a right to participate.

Reference

§http://www.aho.afro.who.int/profiles_information/index.php/Malawi:Analytical_summary_Health_Status_and_Trends

§http://www.health.state.mn.us/communityeng/intro/