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This is just for interest sake, in communities where research is not accepted at all, even when you try engaging with stakeholders from different levels but they seem to be not interested. do you continue with the trial hoping that some of the community members will end up understanding the research? If yes, how sure are you as research team that those communities won’t have impact on other communities when the studies are conducted in the those other areas?
The course was very interesting, eye opening and there is still more that need to be done on our side. I have learned that engaging with community stakeholders does not necessarily mean that they will all support and accept what we are doing as a research but keeping things transparent is the key, respecting and understanding the community from different levels can help us getting where we are going quick and easy because in that way we will be travelling on the trust of one another and lift each other up along the way. GPP Team, thank you for your patience, dedication and always willing to assist.
Inviting all trial participants in small groups to address the issue because once the rumours are spread fewer participants will attend their schedule visits. Involving the stakeholders and the media might also be solution because the word is spread easily by means of communication but that will be possible only if the sponsor agrees. Conducting community events in areas that we suspect have a little knowledge of the research and are against the research.
In the beginning of the study, research team was suppose to do research about the community and find out what might be the issues regarding the trial and come up with issues management plan. Targeting areas that most participants are coming from or where they spend most of their time, places like nightclubs and even include people from those areas in the community advisory board.
According to my understanding before the protocol is finalised, research teams receive a draft and that draft is used by the research teams to ensure that a range of stakeholders give their input on how the protocol is designed and voice out their concerns and what is unacceptable and acceptable in the community. Trial sponsors only send a final version of the protocol once research teams together with stakeholders are satisfied or have made changes where applicable and that’s a protocol development process. I think in such scenarios maybe a protocol can be amended.
I was also thinking of Local clinics and Traditional healers involving them as part of community stakeholders is important because it is common that after a participant has received results from the research clinic, most of them go to local clinics for another tests and some even go to traditional healers who usual treat the matter differently because of their knowledge and understanding of HIV.
This trial created a misunderstanding and information was not given properly. looking at different stakeholders some were demanding study to be closed or to be redesigned. This on the other hand shows that it is very important to involve different stakeholders at the beginning of the trial because that’s when you find out their views and concerns about the trial rather than to wait till there are problems. Looking at section 3 of Good Participatory Practices there are lot practices that were going to help like protocol development, Formative research activities and communications plan.
- Protocol describes the rationale, objectives, design, methodology, statistical considerations, ethical considerations and organisation of trial. CAB members give their input during protocol discussion but we use draft protocol because that when we are able to make changes and CAB members sometimes come up with words used in the community that we as a site were not aware of, those are one of the important stakeholders in the community and their involvement in the trial is important. It is very important to be transparent with our stakeholders and give a clear understanding protocol development process.
- When Protocol is sent, we as a trial staff sit and discuss the protocol, we look at the language used and we translate to language used in our community so that it will be understood by everyone. We then identify relevant stakeholders who usually are the CAB members therefore Study Coordinator and or Principal Investigator conduct a meeting with the CAB members to inform them about the protocol and they give their input.
I think the most important thing is to find out what might have been the reason for her ineligibility and from there, involve CAB where the participant is coming from because CAB members know the community and they understand everything happening in the community. Community events can also be a great step to address all the myths and misconceptions because by community events you not only targeting a certain number of people but community as a whole.
1. Stakeholder mapping is an important step to understand who your key stakeholders are, where they come from, and what they are looking for in the relationship to your organisation. In our Research centre when doing stakeholder mapping, we list all relevant groups, organisations and that is regarded as identifying stakeholders and in that process we try to understand what is going to be their main interest in the research. stakeholders are engaged according to their levels and their roles in the community but all stakeholders are very important because they all have influence in the community.
2. Engaging with stakeholders to create a community sustained engagement is very important that also including understanding their roles in the community and their understanding of the research. by attending community events and letting community understand what is really happening in research centre.
Dear Erica,
I believe that involving community is very much important, that also help with identifying stakeholders that might have a negative impact in the trial process. by the look of things you are targeting stakeholders in different levels that a brilliant idea. Understanding channels of communication is very important as one of the formative research activities.
1. As we know Formative Research enables Research team to gain understanding of the local populations, it social, cultural, norms and practices that helps a lot in engaging with the community, because understanding the community you working with assist a lot in the trial process. Understanding the channels of communication is also very important because for example in rural areas we still have Chiefs and we use certain way to address any issues to them that includes trials that we might be conducting, importance of dress code, language used but all that happens only if there is an engagement with community because some of research team members are coming from different areas which are unique from where the trial is conducted therefore engaging with the community helps in overcoming all possible situations that may cause delays and study to be unsuccessful. The difference between the two is that, when the study is conducted protocol is developed and the protocol need to be followed and there are situations whereby the community might have different views when it comes to the how the protocol is drafted and it is impossible to put everything according to what some of community members prefer that is why its important to involve community in different levels.
2. We conducted community events in rural areas where the community is still naïve when it comes to research and we involved community members who are very influential in those communities, we also involved CAB members whom we consider as our community stakeholders. We also had a Soccer Tournament that was attended by all municipalities that are under UThukela District Municipality and the main purpose of that tournament was Male involvement. It all started with a march that was lead by the Mayor of UThukela District and the March was all about “No woman will be abused in my name” “No woman will be infected in my name” and Brothers for life was part of that March and the whole event. We believe that if male partners are involved in research trial it will be much easier for women to participate and adhere to trials that are conducted.
Terfa,
I like your points and as we have Issues management plan as one of GPP Guidelines topic areas we really need to come up with strategies that are useful and will prevent unforeseen circumstances.
They do give the information upfront but in most cases you find that, we get informed few days before the protest and by then we already have participants booked according to their windows but it does help a lot to be informed on time. Well some communities do continue with protest even after the municipality has come up with the solutions as long as they are not satisfied and that is against the law but they do it.
In my community gender based violence is not the main issue but that might also be caused by those communities who are scared to come out and there are community organisations that also fight against gender based violence that includes “Brothers for life”
Community service protest is our main problem in the community, few weeks ago we had a protest that lasted about 2 weeks. roads were closed even if you had your own transport to accommodate participants it was difficult to reach their households. In situations like this the main concern is participants we need to think about their safety first as much as we need them to attend their visits. we do engage with stakeholders because they inform us when the protest is going to take place and how long is it going to take. the Mayor usually meets with the community and come up with the solution and how to meet the community half way.
