A total of 32 respondents participated in the study that included 17 policy makers and 15 leading malariologists. Policy makers included three females and 14 males; researchers included three females and 12 males. The balance of policymakers and researchers allowed us a fair comparison between their perspectives and to generate conclusions.
The findings are presented by themes that emerged during the interviews, integrating direct responses from both researchers and policy makers. The initial themes and sub-themes were further consolidated aligning with the research question and the final themes and sub-themes included
Aims of community engagement;
Strategies for community engagement;
Activities or tools for community engagement; and
Challenges for effective community engagement.
Both policy makers and researchers described community engagement as an important aspect of research/programs to ensure prospective community members understand the study or programs, their objectives, benefits, possible complications and agreement to participate. Both researchers and policymakers said the main objectives of community engagement was to promote participation in research or programmatic intervention, and in the case of MDA, population coverage (figure 1).
One of the policymakers reflected on the modelling studies related to mass antimalarial administration, where high population coverage was emphasized to be critical for the success of this intervention.
So, the modelers have agreed that achieving high coverage is what you need to make MDA effective. If that’s what you need to achieve, then of course that’s where your community engagement comes in, because if you don’t have a community that is convinced that this is a good idea you don’t achieve coverage, then this thing will not be effective (SSI-P14)
Others reflected generically about why and how community engagement should be an integral part of the research or intervention.
… I think community engagement is a key thing. The community beforehand should be convinced, should be informed about the remedy and its benefit and so on and so forth … (SSI-P8)
At the time of the interviews, several MDA trials were ongoing in Southeast Asia, and potential respondents were presented with a precis of these trials as part of the information sheet. Researchers generally expressed the outcome of community engagement in terms of MDA studies, particularly the critical role of high participation/population coverage in the success of MDA.
CE is the essential method, it is very important tool, and it is the first activity to be implemented in the ME project before we can do a[n] MDA and MDA related activities (SSI-P24)
Both policy makers and researchers highlighted the goal and purpose of community engagement to build trust among the community members, which could ultimately affect participation. Nevertheless, several challenges were mentioned by both policy makers and researchers that may have an impact on this goal. With regard to selecting an appropriate person for community engagement in the community, someone who is respected, and popular in community was deemed to garner more trust than researchers who is an outsider to the community.
They know the governor, they know the district governor, they know the community chief. Not us who make the trust; we use these people to make the trust. (SSI-P13)
Reflecting on the MDA studies, a few policymakers mentioned that when community members experienced adverse events due to antimalarials offered, the relationships and the trust towards the researchers (and their representatives) played a critical role in maintaining the acceptance of the MDA.
They understand well that they have to take this drug, even if there is some side effect or something like that (SSI-P4)
A few policymakers also clearly stated that early, and well-planned engagement strategies is critical, in contrast to engagement that reacts to setbacks in the community. Such setbacks and failures, often due to poor engagement strategies can generate a negative reputation/impression that can erode trust for future community engagement efforts and research.
I think the risk of failure is that once you use this tool, and it fails, it would be very hard to go back to that community and ask them to do it again. … If you're going to do it, you better know that you're going to succeed." Because then you lose it forever (SSI-P7)
When it came to politics around research implementation, researchers clearly expressed the potential challenges in politically divided communities, where even slight inclination towards one group can mean other group can be against the whole research and explained that it could ruin the trust.
If you are perceived to be sided for one group or another, or sided with the government or against, then you are dead. You have to gain the trust of everybody and that’s what we have been doing in community engagement. In fact, community engagement is only about trust. Trust at the highest level – your level one, your level two, your level three and all the way to the…... I would say in this case, the level five, which is the people is much more important; at the village level (SSI-P27)
Researchers also reported the importance of historical legacies of research, community members’ past experience with the institution and researchers. Community members may suspect the true objectives of the study intervention because of bad experiences with former projects – this may also lead to difficulties in trust building and thus may threaten the whole study.
And we worked in a village 10 years ago …, and we had been taking blood, and there was lots of discussion where we agreed that we could do that. And then we asked to take stools as well. And the village committee met and discussed our request to have stool samples. And we were sitting in the school on the little chairs, right? And the committee came in, a file of elderly men, and they looked terribly severe and unhappy. And the village head said, "We've considered." XXXX translated. It was in ‘Lao theung’. It was in Lao. The village head said, "We've considered your request, and we agree." And they all laughed and banged their hands on the table and said, "Because we were very worried that you might sell our blood, but we're pretty damn sure you're not going to sell our stool. (SSI-P30)
One researcher pointed out that to gain trust, it is crucial that the study team takes responsibility for all potential complication related to the study that may occur. According to the researcher many participants are not just worried about their own health but also of the potential consequences, complications related to the study that may bring to their families if they cannot work and support their family anymore.
Most policy makers agreed on that the initial approach should go through the leadership of the community,
You engage first with the leaders and then once they have understood the story on why you are there and what is going to happen and go and inform the rest of the population…” (SSI-P1)
Many policy makers also stressed the importance of a formal approach, for example with documentation of official approval. One of the policy makers favored starting community engagement with a small group within the community who then can function as a bridge to other community members who may be more difficult to get access to and to convince to participate. Several policy makers pointed out that understanding the structure of the community’s leadership, if possible, through local partners, makes it a lot easier to find out on who to contact first,
…find out specifically, every locale who we need to talk to, who the decision makers are. You know, maybe if you want to talk to the village chief but he has actually had a 50-year multi generation l feud with some other family over here. We always go through local partners who we hope to have that answer or have that kind of local information (SSI-P23)
Most researchers agreed with policy makers’ opinion to initiate a community approach through the village leaders and for them to have a public meeting and discuss with the community (SSI-P30). Those village leaders may have different positions within in the community and, as mentioned above, should be selected if possible with the help of local partners.
First contact was usually made by village leaders, spiritual leaders, the health workers discuss with them and then they kind of organize further steps.. (SSI-P25)
In response to what could be various approaches and activities for community engagement, both policymakers and researchers shared a variety of activities that were and could be potentially appealing to community members. Most of the respondents described that utilizing audio-visual methods to communicate with community members to be important.
Among those mentioned by policy makers were focus groups “… bringing everyone together, bringing up the leader and the one with influence….as well as other activities as drama, concerts, dances and showing movies. If you have DVDs, the TV is super” (SSI-P1)
Respondents described other tools such as the use of mass media, leaflet, hand-outs and visual representations. All these tools were thought to be more comprehensible for community members with poor literacy as well as being attractive and entertaining. Policymakers emphasized the need to utilize the latest technologies to reach community members.
Mass media campaigns through radio channels, with the very famous local program to ensure that people are aware of what is going to happen. We do almost a month of this before we start to do the MDA. (SSI-P16)
Most researchers stressed the need to visualize messages – including the study/program objective – rather than just brief them to community members.
… we showed to each other village; we showed what was happening in the other villages. We had maps and we had graphs and things that are easy to visualize. Said you see in that other village over there; we did the same program and look at the number of cases. Last month they had no case of malaria. But your village, it’s going up and up. Then people start to realize (SSI-P27)
Regardless of advancement in technologies, meetings were also described as crucial, conventional and comprehensive platform to get researchers’ message get across.
“The most effective, right? I think, from what I observed - the meeting, the meeting with the villagers” (SSI P13)
A researcher also reflected on the MDA study in Laos, and emphasized the value of meetings where visually appealing posters were an important tool to discuss about the study.
The village where we worked with ethnic minority, we explained using posters, [which] people understand best (SSI-P29)
Several of these tools were mentioned by researchers and policymakers and they also emphasized entertaining activities, such as community games, were essential to boost familiarity and build relationships in the community.
Researchers and policymakers highlighted several challenges for effective community engagement. One policy maker highlighted being naïve, with regard to understanding the community, as a wide-spread problem that has caused problems in several interventions in the past.
This broad assumption that you can just walk up and go to people’s place and assume that A) they’re there, as if the whole of the community sits in a hut waiting for public health people to walk up, and B) you will just take whatever the people tell you to take is a mind-blowing assumption in my opinion. I don’t know where that comes from (SSI-P14)
One challenge was that researchers pointed out the lack of universally applicable principles or strategies for community engagement. Researchers also mentioned the fact that (human and financial) resources were often insufficient for thorough community engagement. The high costs and effort was described a main reason why several governmental institutions are often hesitant in regard to implementing large-scale community engagement.
Respondents also identified challenges related to ethnic, linguistic and cultural diversity, which can require resources when conducting engagement. Selecting a suitable and applicable approach to such a heterogenous group of community members was reported to be a major challenge and referred to Laos where there are scores of ethnic groups. Other challenges raised by respondents were due to remoteness and poor accessibility to the villages where malaria is endemic.
The use of incentives was described as a very delicate topic in community engagement. Only a few researchers made the distinction between various forms of payment – reimbursement, compensation and incentives – made to research participants. The term ‘incentives’ was seemingly used by respondents to mean any form of material benefits offered to research participants.
The definition of what is an incentive and weather giving incentives is acceptable differed within and between both groups. Most policy makers opposed incentives in terms of cash payments due to ethical concerns. Some offered examples of how incentives (including the amount) is interpreted based on the local context. In most instances, community members can interpret incentives as payment or and exchange for the participation.
I think that is unethical. You cannot pay people to take drugs. This, I think, is forbidden by ethical committees (SSI-P5)
Nonetheless, policymakers did agree that participants needed to be compensated for their loss of opportunity and incurred costs attached to the participation in the research.
That they come and listen to you, or attend your MDA, whatever. What do they lose by not going to the rice field? These things need some compensation. (SSI-P6).
Researchers justified payments if deemed to be a compensation for lost opportunity or income for their participation in research but not as material benefits (incentives) to promote participation.
A few respondents, mostly policymakers raised an important issue of sustainability of offering incentives when it came to rolling out of large scale interventions or programmes.
In contrast, most researchers considered compensation as necessary and crucial tool in recruitment. they saw payments as an integral component of standard research recruitment where potential participants need to be compensated for lost opportunity and income.
Lost income for an intervention which is, at this stage, experimental. You should pay for it.” (SSI P32)
Other researchers stressed an importance of offering a community incentive rather than individual incentives. This was particularly relevant for very large-scale studies or programs, for which individual incentives would be a burden in terms of resources and time it requires.
Few researchers also pointed out the vulnerability of participants, especially in poor communities, where incentives may be important to ensure community members participate. Researchers also explained the lack of essential health care in remote communities, implying offering health care was thought to be important.
At least a few more services at that health post, not just malaria, but you have a little bit of paracetamol, penicillin, whatever.. (SSI-P26).
Human resources were deemed central in community engagement by both researchers and policymakers. Several policymakers reported challenges in regard to finding culturally competent staff with proper “education, writing and reading abilities, languages.” (SSI-P6)
A few policy makers described the option of involving other prominent figures within the community, as for example local healers, who may be willing to cooperate and give access to other community members,
…with the benefit of this very deep, local, ethical, logical knowledge that is very locale specific we were able to convince to refer kids with that specific diagnosis to the hospital for the research team supplementing the local doctors to treat with proper anti-malarial (SSI-P23)
Several senior researchers stressed the importance of working with local staff to build the knowledge base and to implement the research/project efficiently
On the knowledge of the people who are doing the work, which are most of the people in this unit, … people from the local population. 90% of the people who do the work are Karen or Burmese or Thai. If you listen to them, they tell you a lot of things. They tell you that in this place, no, you can’t go. We cannot. They know who to talk to be able to approach person X, Y and Z. ((SSI-P27)
One of the researchers emphasized that specifically in the beginning of the intervention it is crucial to have local- and well-respected people on the team.
Who know how to build a team which is going to be accepted, recognized and trusted by whatever community (SSI-P27)
Even the local recruitment was recommended to be handed over to the locally respected person. In support to finding staff that is locally respected ‘We usually hired village leaders or some of his people [familiar person] to find people … “ (SSI-P25)