Ethics & Engagement across the Wellcome Trust Major Overseas Programmes
I would like to share the status update of my bursary project on views of research stakeholders about appropriate compensation and benefits for study participation in Malawi.
This project aims at exploring views about appropriate compensation and benefits among research stakeholders, including research participants, community members, ethics committee members and researchers. In Malawi, different research institutions provide different levels of compensations and benefits to study participants. Evidence from this study will therefore help to review discussions among research ethics committee members and research institutions about appropriate compensation for study participants in Malawi.
The study protocol was submitted in June 2018 to Liverpool School of Tropical Medicine (LSTM) ethics committee as well as the Malawi College of Medicine Research Ethics Committee (COMREC) for ethical review. The protocol took time to be approved than anticipated due a couple of issues, with regards to recruitment of decliners in this study. Eventually, the issues were successfully addressed and I got approval from both COMREC and LSTM in November 2018 and February 2019 respectively.
I started data collection and coding in February 2019. This study employed a qualitative study design using 17 in-depth interviews (IDI) and 10 Focus Group Discussions (FGDs) with MLW study participants, study decliners, community leaders, MLW field workers, researchers, District Health Officers (DHO), REC members and Community Advisory Groups. So far, I have completed seven FGDs with the following groups: community leaders, MLW field workers/nurses, MLW study participants, MLW study decliners and Community advisory group members. Eight IDIs have also been conducted with five researchers, two REC members and one DHO.
Some of the preliminary findings show that views on study compensation differ between researchers and study participants. For instance, some researchers felt that providing medical care to study participants is a justifiable compensation/benefit rather than monetary compensation. On the other hand, some study participants felt that researchers should put themselves in the shoes of research participants when determining compensation and engage communities when determining appropriate benefits for study participation. According to them, appropriate benefits include services that community members may not be able to access or afford by themselves as shown in the following quote: “Most researchers bring to people what people don’t see as a need, but what they can afford”. I hope to share more preliminary results at the next summer school.
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