From analysis of our data, there emerged three (3) major themes: (1) the goals and, or value or importance of CE; (2) the means of CE, as a generic description of strategies, approaches, activities and methods of CE; and, (3) the evaluation of the success of CE. These themes and data in each of them had similarities and differences with those we identified from literature. Each of these themes will be discussed in greater detail below.
Goals and, or Value of CE
On the goals and value of CE, one of the major findings of this study was that there is noteworthy overlap between goals of CE as stated in the literature, and the perspectives of participants in this study. However, there was disagreement among our respondents on whether there should be some universal goals of CE, and if so, what these should be. Another major observation from the findings of this study is that in thinking about CE there is substantial overlap between the goals of CE on the one hand, and the value or importance of CE on the other. The findings from this study suggest that these are different ways of saying the same thing. A point of universal agreement from respondents was on the critical importance of communities’ agency; that is, that community engagement should aim at amplifying a community’s voice and influence in research by giving communities an opportunity to participate in the research process, especially the design of and translation of informed consent, community mobilizations, community education and sensitization among others.
For clarity, however, it is important to note that the views which emerged under this theme indicate that most of the goals and, or value of CE can be subsumed under four (4) sub-themes: (1) To respect and promote communities’ agency; (2) To increase participants’ and communities’ trust in the study being conducted and future studies; (3) To protect and promote individual study participants’ and their communities’ rights, interests and general well-being; and, (4) To help the study achieve its own goals.
The idea of CE as a means to respect and promote communities’ agency was widely expressed in the form of communities’ desire to participate in and influence efforts to solving their own problems. Some CAB members felt that as members of the community they deserve an opportunity to participate in the search for solutions to problems that afflict them, in this case the HIV/AIDS scourge. Hence, their membership to a CAB and generally participation in CE activities were described as an opportunity to contribute to efforts to solve their community’s problems. One of the CAB members stated:
“[…] so that’s why some of us entered to fight against AIDS and to help our people in the area.” FG01-02.
In particular, all CABs indicated that they facilitate the design of appropriate study materials, and they usually advise researchers on the appropriateness of such materials as consent form, data collecting tools, design of information materials for community education and mobilization such as posters, among others. This view was corroborated by some of the PIs.
Some of our respondents alluded to the value of agency when they described CE as a strategy for community acceptance and ownership of research. Some suggested that the goal of some CE activities is to ensure that communities develop a sense of ownership and support for the research project. In their view, it is this active involvement of communities and acceptance of their influence that create a sense of ownership of the studies.
“We take the whole day in a specific place and talk to people; some activities are carried out so that these people can own because they need to own the system otherwise people will never work with you if they don’t own what you are doing […].” FG03-04.
Almost all of our respondents’ views suggested that whether researchers will be trusted by the research communities partly depends on how and through whom they approach the target community. Several respondents described a key goal of CE as providing a link between communities and researchers or research institutions, a link that generally does not exist. Hence, some respondents explicitly stated one of the goals of CABs as being to bridge the gap between communities and researchers, as a strategy for improving communication between the two groups. This view was reiterated by one of the PIs, according to whom, CE facilitates community entry and hence, some of the CE activities and strategies should be driven by this goal. This PI indicated that one of the aims of CE is to create a trustful and supportive relationship with community leaders as the community gate keepers, emphasizing that such a relationship is very key especially when one goes “to the community for meeting or there is a problem or whatever it is very easy to contact these people who will help you and advise you on how to go about with whatever activity you are planning […]” (PI – 02).
One of the major and, arguably, the most critical trust-affecting feature in the researcher-community interaction are perceptions –including any myths and misconceptions-- individuals and communities have about the goals of the study. Some CAB members believed that identifying and dispelling myths was one of their best achieved goals in CE. We heard that:
“[…] You know it’s not easy because sometimes people are very scared. They hear some things from some people which make them suspicious and they say let others join; why me? So I think another achievement we can talk about in this board is clearing misconceptions and myths.” FG02-06.
One of the PIs emphasized this view with the following response:
“[…] For instance, there are myths going on in communities around that we are infecting people with HIV so am informed so we sit down as a team and we see how to go about sorting this with this problem.” (PI-02).
Protection of individuals and communities
Another set of goals and, or value of CE in research emerged as ensuring that the rights, interests, and well-being of individual study participants as well as those of study communities are respected, protected and promoted. Some respondents indicated that they did not want researchers to abuse the rights of their people, especially due to people’s vulnerability created by ignorance. Another threat from which the communities need to be protected, in the view of our respondents, is the potential violation of their societal norms by the researchers.
“Basically, we always tell them to first of all respect human participants, it’s very important never bring a research that is harmful to the human subjects. Secondly, they should ever respect the community norms so don’t bring something that will bring the touch the norms […].” (CLO-02)
A substantial number of the goals of CE cited by the study participants indicated that most of the CE activities and the manner of their implementation are aimed at helping the study achieve its target on enrolment and retention of study participants. This was corroborated by a universal agreement among our respondents that the linking or bridging aim is important to ensure effective mobilization of communities to accept and participate in the study. This view was shared by CAB members, PIs as well as CLOs. In the words of some of the CAB members:
“Then secondly we help our community because we know if we are not involved as leaders these people may find it difficult to get participants. So we have mobilized our members and encourage them to support the project and enter the study hence we can find solutions to our problems and the whole country at large.” FG03-04.
This goal was emphasized by some of the PIs in the following words:
“[…] without a community engagement plan I don’t know if you are able to have conducted clinical trials because it starts with them from the communities so by the time they come here to the site to be screened and enrolled, there is a lot that has happened in the community” (PI-01).
To one of the CLOs, the goal of ensuring the successful recruitment of study participants as one of the primary goals of studies was indirectly expressed as one of their major achievements in CE.
“We have never failed to get a [needed] sample [size] and scientists have never failed to get samples they need from our participants because of that [community engagement].” CLO-02.
For all biomedical studies involving human participants, being able to retain the enrolled study participants is critical for the study’s success. In the view of one of the PIs, for that matter, CE is valuable as a strategy for identifying and addressing obstacles to the retention of study participants:
“[…] it is one thing screening and enrolling people but are you going to retain them in the study because as you enroll them you get to realize there are different challenges that may affect their retention so you need […] to work closely with the community engagement […].”(PI-01).
Means of conducting CE
With regard to the most effective strategies, methods or approaches that could be used in undertaking CE, it emerged that ‘no size fits all’. Which approach to use will vary with geographical contexts even within the same country (including in the same community), and with the nature of studies including the goals and objectives of the study, target populations, among others. Even though there is noteworthy overlap between the approaches and methods used by different research projects, our respondents indicated that it would be difficult and, in any case undesirable, to assign privilege to any of them over the others. For this reason, our respondents suggested first and foremost that it may be more rewarding to propose criteria to use whenever trying to identify the most appropriate approaches, strategies, activities and methods, as opposed to recommending and ranking specific methods, approaches, strategies and activities. The following were the dominant views on the factors to consider in choosing which methods/approaches/strategies are appropriate for CE in different contexts and studies.
Resources Implications: A majority of our respondents emphasized the caution that each approach, method or strategy, along with its activities or mechanisms chosen to implement CE, has varying resource implications. Hence, in our respondents’ view, the success and failure of any CE may depend on whether there are sufficient resources to implement the chosen activities and methods used to implement them. This view is represented by the following quote:
“So you must consider the budget also for example if you say let us put announcement may be in New Vision or Bukedde [some of Uganda’s major national Newspapers], what is the price, is the project okay with it?” FG03-08.
On the other hand, activities such as community mobilization and education, literacy levels and things such as the reading culture of the target community especially of the potential study participants, were widely indicated as critical factors to consider in choosing communication mechanisms during CE:
“But also you know reading Newspapers is a problem because they use it to light ‘sigiri’ [Trans: Charcoal stove], or toilet paper instead of reading so that may not work for village community because of illiterate participants.” FG03-08.
Settlement patterns and population densities in target communities were also described as critical consideration in choosing the means:
“[…] for example in islands it is like a town. People are near [each other] so a community radio [Megaphone] can reach all but you cannot use the same in the village like you [the interviewer] have said you come from Mbarara we hear people in the whole parish you have maybe 20 homes and because of distance you cannot use it.” FG03-07.
Some of our respondents noted that participation in some studies may lead to stigma for participants. Hence, bearing in mind the nature of different studies, mobilization, sensitization and other CE activities should take into consideration the risk of stigma to those who will eventually participate in the study. To most of our participants, being enrolled in certain studies such as HIV-related studies must be kept a secret, otherwise very few, if any, will be willing to be study participants. Their reasoning was that any CE activities or methods that may lead communities to identify or suspect anybody as a study participant would be counterproductive. For example, we heard that:
“Ya, as someone talked about stigma and rumors, if say maybe people who are like this come for a meeting on the sub-county office on Tuesday. I can assure you, you are wasting your time because it is a secret.” FG03-07.
Others indicated that considering the convenience of the community and study participants is critical. Some of the respondents indicated that agricultural seasons—such as ploughing, planting, weeding and harvesting—make a difference for especially studies that are targeting rural communities. Another factor cited in determining communities’ and participants’ convenience was time of the day and place of meeting given that a particular community is of interest:
“At times depending on the participants you want for a particular trial you may find that it is necessary to maybe just talk to bar owners so the team usually organizes a separate meeting for bar owner or you feel you just want to talk to the men, may be you’re going to find them when they are doing their [fishing] nets on their boats along the shores. […]” (PI-01).
Having heard the above views, we probed further to see if our respondents could help identify specific strategies, approaches and methods different CABs and research projects used in their CEs, and they believed could work best generally. However, several respondents insisted that they figure out their strategies, methods and approaches based on local circumstances. One of the views emphasized and that was never contradicted by a single respondent was that they do not usually have a list of fixed methods, strategies or approaches to use. However, they were able to state their most commonly used means of conducting CE, although with strong implicit caution that the mere fact of their common use does not suggest that they should generally be ranked highly in the choice of appropriate means to conduct CE in future studies. Further, several respondents talked about the importance of implementing several strategies or targeting strategies to the group one hopes to engage. On this issue, the most revealing response we obtained after insistently probing on the best methods, approaches and strategies was the following:
“Maybe I may not answer your question very well as you want because for us in our work we don’t have a list of approaches and, […] But I can tell you about our activities. Every day we are doing our work because even if someone comes to your shop and ask by the way I heard like this or like that; is it true? Of course, you can share there and then even in a taxi, but also we reorganized in our work because sometimes they can say, hey, we have some money for mobilization and we plan together maybe like sports like competition and the winner gets a cow. So, […] Creativity is very important.” FG03-02.
One of the PIs corroborated the same perspective in the following words:
“[…] there is no particular strategy that we use so you find that for instance you want to just go and educate communities, you will call for a meeting then you will need to have some materials, many times because these meetings don’t take place in a hall where you’re going to make a power point presentation, we usually go with the materials like the IEC materials that the sponsor sends: flip charts that are pictorial, that someone can look at and understand what you are talking about […] before we would just use the radio announcements ,we engage those local radios to go around. […]. (PI–03)
Although no preference was explicitly indicated for any single strategy for engaging communities, there was a view that generally face-to-face engagement is better than technology-mediated engagement; for example, community events are better than radio talk shows. According to this view, whereas in principle radios would be good for massive outreach, such technology-mediated channels are less effective compared to community-based face-to-face engagements.
Even though no specific methods, strategies, approaches and actives were indicated as generally the best, our respondents indicated some of the methods, activities, strategies or approaches they have used in their CE activities. One of such activities is periodic meetings. One of the FGD participants had this to say:
“Maybe I can just list the rest: radio announcements, megaphones maybe around the place, mass sms, some islands have community radios like megaphones but stationed in one place, ya, there many methods we use depending on many factors. Well, I can say for example if you, for example, I can say that for example if a study has stigma chances you cannot announce in church in that case you can use SMS or call them on phone, ya.” FG03-01.
Further, one of our participants from CABs indicated one innovative and clear-cut strategy for ensuring that issues are timely identified and addressed, especially those of an emergency nature. This was the formation of certain responsibility committees within communities entrusted with such responsibility:
“We have an issue management committee, an issue management committee comes in when there is an emergency, they really put in a quick intervention to see how it should be handled and thereafter it reallocates the proper solution […].” FG02-01.
Another strategy specifically for information sharing and mobilization that was widely indicated is taking advantage of religious and other social events and gatherings.
“Yes, sports are important in mobilization but let me talk about another thing, like in those days [early days of HIV/AIDS in Uganda] even in church everybody was talking about ‘silimu, silimu silimu’ [local term for HIV/AIDS] so every members got awareness so churches can help in mobilization. […] FG03-03.
“[…] community gathering even funerals, weddings, and introduction [ceremonies for giving away the bride] are good opportunities especially if you are careful.” FG03-07
Another typical strategy that was mentioned was in the form of whom to involve in CE activities. In regard to this as a strategy for ensuring successful CE, they suggested a variety of group representation—politicians, religious leaders, journalists, bar owners, etc., depending on the target population.
Generally, regarding strategies, methods, and approaches for effective community engagement, our respondents’ views implied that there is no substitute for researchers’ deeper understanding of their target communities and the local dynamics therein.
Evaluation of CE
Given the critical importance of meaningfully engaging communities in research, it is important to deliberately and systematically track and evaluate community engagement processes. Respondents in this study suggested that some research projects have formally evaluated CE while others have not. In one project, the trigger for the evaluation was indicated to be a failure to achieve some of its key goals, specifically reaching their recruitment and retention targets. Further, even though it is expected that if there were to be any formal evaluation of CE, the project’s or institution’s CLOs would be actively involved, one of the liaisons officers indicated that these evaluations are a responsibility of the scientists.
“A formal evaluation is always done by the scientists. I was expecting to get 5000 participants in this community. Mobilization activities have been done, am failing to get the number there must be a problem in mobilization that was done, the scientists come back to us, why is this one not going on well, maybe we employ another channel. So the evaluation is done if they don’t come back to us, the evaluation is done within the quarterly meeting that’s we always hear that the target in this community was achieved.” (CLO – 02).