I start by admitting that in our site we have not engage in stakeholder mapping as described in this course, though I have some experience to share, that makes the case for the need for stakeholder engagement before trials.
1. Our first study was a HIV vaccine cohort targeting mainly Tea plantation workers and their adult dependents to establish HIV prevalence, incidence and viral diversity in this community which fairly represented the general population in the region. The tea plantation was chosen because it had a stable population of migrant workers residing in the plantation who would be easy to follow up. Scientists went population and explained to the workers that they aimed to recruit participants who would be tested for HIV and the results would be confidential, among the information to be used would be their employment numbers. Plantation workers declined because they thought their employer was working with the research to find out people who were infected so that they could be fired. During that time care and treatment was not available and knowing one was infected was like a death sentence. All attempts by management to convince workers to attend information sessions failed, since workers and their adult dependents had been assured that participation was voluntary.
Scientist took a back seat and engaged community outreach team to establish what the issues that generated hostile reception of the study were. This when it was decided after learning from sites that had done similar work, that it was important to form a community advisory group. A scientist, plantation executive and some plantation union representatives were picked and the scientist became the group chair. When meeting were called, participation was very poor. To improve community dynamics, the scientist, and Tea plantation executive stepped down, and in their place a local teacher, health care worker, and grass root government administrator were picked and information on community fears and concerns started flowing in, which were gradually addressed
The local administrator, Pastors and teachers had received all manner of myths from the community indicating that they trusted them and hence their membership. Workers were being represented by their union and they had to be included. Members were therefore picked based on the trust the target community had on them.
To engage various stakeholders of diverse backgrounds was initially a challenge, however they were informed in capacity building forums that HIV was wrecking havoc in the community and has leaders they have to lead the fight from the front and that research was critical in knowing the extend of the problem, so that a solution the search for a vaccine could begin. They were eventually brought together in support of research by the common threat they all faced.
