How much will i be compesated if accept to participate?

Study participants get up to £100 in Europe

Often times when introducing new studies and during other community engagement activities, potential participants look forward to hear benefits  which the discussed new study will bring to them; both individual benefits, community benefits, short term and long term benefits.

With a lot of Community Engagement (CE) activities done in areas where research is done, communities are now  well aware of their rights, they understand that researchers need to seek their consent for their voluntary participation, they know about compensation and benefits attached to it, they know that they have a right to exist the study at any point of their choice. Currently studies provide different incentives in form of money ranging from K1,000 (£1) to K5,000, (£5 recently it has been increased to K7,500 (£7.5). Other studies give participants materials which are dependent on the design of the study, these may include; groceries, nappies, basins etc.  however it is not yet clear how or which these benefits are relevant to the local context here in Malawi.  There's need to do research about compensation and benefits now that more communities are demanding benefits for participating in studies. Ethics Committees in Malawi do not have clear guidelines as to how much participants should be compensated, of late it is reported that each participant should be given not more than  £7.5, i am yet to explore if this amount is for any study in Malawi in the country.

There's a huge margin if we're to contrast research compensation between Malawi and other European countries. Participants in Europe are compensated up to £100 in clinical trials, an amount which can not be provided here in Malawi apart from a maximum of  £5 which is observed in studies, such might be the case with other studies in other African countries.  One obvious factor leading to this margin could be a difference in economy of the countries however there are a number of issues to look at this currently state and practice between Malawi and European countries; 

1. Having small amount to compensate participants work to the researchers' advantage in a way that they don't spend more on their budget but we know that it's one way of taking advantage of the low class people, especially those residing in areas away from urban areas and appreciate a compensation as small as £2. We know how difficult the economy  is at present, one would easily accept to participate to gain the mentioned amount. 
2.  In Europe study adverts with a compensation amount are pasted in public places, inviting people to participate. the practice is different here in Malawi; researchers emphasize voluntary participation the moment they're asked to share the benefits which their studies plan to offer its participant.They also emphasize the benefits their study will to a community at large, one statement i have heard several times is, "the committee approving studies at College of medicine doesn't allow us to provide more money than what we've mentioned".  i have always thought  about the truth of the statement.  If participants are given £100 in UK, isn't there any chance we can compensate our participants better here in Malawi? 
One will argue that if researcher increase compensation then more people will decide to participate, eventually defeating participants' autonomy. that might be true but how do they manage it in UK? we can learn from their experiences and improve practice here in Malawi.  my next article will focus on why more studies are conducted here in Sub Saharan Africa like Malawi than in European countries and also why it is important to compensate  participants in research here in Malawi. These are my opinions, independent from any research institution's practice in Malawi.

 

Celebrating 10 years of Community Engagement Practice

October 2007 will remain a memorable day in my life, it’s a month I joined Malawi Liverpool Wellcome Trust, initially I didn’t have a clear idea about the organization, my eyes centered on earning a living, nothing much.  I was recruited as a Fieldworker (Fw) for a malaria randomized, placebo-controlled, multi-center trial in four hospitals in Malawi testing the efficacy and safety of intermittent preventive therapy post-discharge (IPTpd) (https://www.ncbi.nlm.nih.gov/pubmed/22172305). Being part of a new team operating at Zomba Central hospital, my role as a Fw was to conduct household follow ups, tracing defaulters, consenting, conducting sensitization meetings and collection stool samples from participants in households. Research was a new field to me and I had a lot to learn, especially adhering to ethical standards. Just like other Fw in Malawi, I had partial training about medical research, I had to spend more time studying about research and more importantly learning from colleagues.

Years passed, little by little I developed passion for  my work,  my interest was flamed  as I interacted with study participants inside and outside wards, my team was also a source of inspiration. Some of the team members were Bridget Mangochi (research Nurse), Dzinenani Truwa (Site In charge) and Misho Chibwe (Data Officer), Dr. Kamija Phiri (Study PI). Each one of them had a character that really mattered and contributed to my foundation to be established in Community Engagement. Dr. Kamija sponsored my studies at Kenya Institute of Social Work and Community Development through distance learning and I managed to study Community Development and Community Health.

I formally joined MLW Science Communication Department in October 2011, by this time I had worked in 2 more studies (ADAPT-  http://www.mlw.mw/index.php/malaria-theme-profiles/321-adapt-2-research-profile.html ) and Iron study done by Dr. Michael Essian. 

The department usually called Science Com had one officer Tamara Chipasula (http://www.mlw.medcol.mw/index.php/grants-management.html), her orientation in the made me to pursue community engagement as a career all the more,  October 2017 marks 10 years of my involvement in health research as a community Engagement practitioner. I would like briefly share most important reflections while interacting with communities.

I have learnt many lessons while working in health research, I would like to share some of these lessons. Bear in mind that these are my own observations, so independent from my institution am currently working

Understanding of health research – Community Engagement (CE) is considered as an ongoing process as long as research is conducted, yes this is very true. However we seem to be a long way from achieving our intended CE objectives such as promoting informed participation. There are more factors to this delay, low level of education in areas where research is conducted in low income countries is one of the factors. Health research is science which needs at least a strong foundation to understand its basics, there are other scientific terms which to date have no exact meaning in local languages and this affect a dialogue between researchers and participating communities. Such observations sometimes raise questions, I have been wondering if at all people really participate in our project after they understand, if not then they do for other reasons and thus where some ethical dilemmas arise. We as community engagement practitioners have a lot of work to do to reduce such gaps.  

Researchers’ community perception – often times there’s a gap between researchers and communities, researchers assume people have a low understanding about research, which is not true every time, not all of them don’t understand. In fact there’s more to learn from communities than the messages we take to them. They have their own ways of understanding issues, they have knowledge and experiences to share, and I have noted that sometimes it’s an approach that matters. Researchers and community engagement practioner need learn norms and values of specific communities, later on plan for various activities targeting them, sometimes involving some community members at all levels of the study can help to reduce a wrong perception researchers have.   

Researcher’s priorities– one of the struggles I have always had while working with researchers is for them to engage communities at a right pace with right reasons. I believe in the notions that researchers should consider CE as an obligation not as a tool to achieve recruitment targets only. The visa versa is true for researchers, they consider CE as a tool to boost their recruitment numbers. This is observed in the eyes of researchers when some potential participants say no to participate in studies, very few researchers feel happy and acknowledge that it’s an individual participant’s right to say yes or no. Especially when screening potential participants and most answers are no, researchers think it’s the right time engage areas where potential participants are coming from. Yes its right to engage them however researchers’ motives might be compromised in a way that their main worry is that if participants keep on saying “no” then study given timelines will not match. Perhaps studies should include an extra period of recruitment.

Summary

The past 10 years have been more informing, several lessons have been gained. Am still passionate to share these experiences. Please take note that these are my personal thoughts and experiences n

Establishing institutional collaborations to achieve Community Engagement

There are many  health research  institutions operating world wide, that include here in Malawi. Despite having different areas of focus, their common interest lies on conducting ethical research, promoting community participation and to some extent achieve a timely participants enrolment. 

In this article i will share my experiences  when it comes to institutions engaging communities collaboratively; its benefits,  the dilemmas, and also  feedback from participating communities.  

Exploring new ways of engaging rural communities – Sporting activities

The year 2016 started on a high note, last year my thinking was challenged by my head of department who encouraged me to be innovative on how we can interactively engage communities about health research.  After so many years of engaging different groups of people it felt like we have exhausted all the channels we would make sure we have a strong relationship with communities in relation to health research. Personally I thought of sporting activities like football; I thought about how many Malawians like following the English Premier League and how they are able to mention most of the players in their teams they support yet they have never met them face to face.  Furthermore I noted how football brings people together especially in rural areas where people travel long distances to watch a football match due to lack of entertainment. Having  this idea I took advantage of the  working relationship that  I established with some of the community leaders in Chikwawa to explore the opportunities that  can be found in  sporting activities to  engage rural masses about health research.

Community leaders greeting players from the two villages

I decided to fund a football bonanza which involved 2 local football teams from separate villages, to me I considered the whole idea as something very small but  in the 2 communities it was something so great and valuable. From what I heard the 2 teams started preparing for the game a month before the actual day and messages about the game were circulating in all the surrounding villages. On the actual day many people from the surrounding villages gathered.

According to my observation I noted football is one of the activities that we can use to reach people about health research, many of the community members gathered to watch the game. This meant that community mobilization was automatically done, there would be no need of coercing them to come and listen to the messages rather in this case the message would be attached to football.  Considering how this whole function went I  observed the importance of using already existing channels to engage communities like this one; people love football and I think it would be easy for them to understand science if its attached to it.

Community work during rainy season

In Malawi rainy season  is experienced between November and April though the trend seems to be changing during these recent years, with such an experience  community based studies have hectic time visiting households. Chikwawa district  is one of the districts that is prone to flooding in Malawi, this is because its topography is  very flat and is also located on the west bank of shire river.  In December 2015, i had a rare opportunity to join one of our study teams  carrying out their community engagement activities within the area we are currently working in and on that day it had just rained the previous night.  The village we  expected to visit is located about 15 kilometers from our field site but getting there was not as easy as we used to travel during dry season. This time the roads were almost impassable however with the help of community members from the same area we had to find our way to the village as they were eagerly waiting for us the whole morning. Having

Community members crossing a small river

Crossing the river

 such an experience i visualized how hard it is for the study team to conduct their activities during the entire season which had just started. One of the  team members shared with me his experience saying that sometimes they reach a point where the fail to visit other villages because the villages are not accessible either by motorbikes or vehicles. The same problem affects the villagers because they can not access any health facility once they are sick, children are the most affected because the areas are Malaria endemic. Such harsh working conditions do not only affect the study team but also  extend the period a study is conducted. On the other hand for some reasons carrying out community engagement  during this period might also become a problem because the villagers always expect  handouts from  organizations  helping out flood victims. For other villages that are not heavily affected by floods, the villagers spend most of their time in farm and its not easy to book meetings for either scheduled follow ups or other activities. One thing i noted for sure was the stress  that originate from this whole experience;  the study team has its targets to achieve by the end of the day, that means they have to get in the villages on time but unfortunately the terrain of the roads do not allow that to happen easily. With that in mind i decided to understand this all the more.