Obtaining community approvals
The process of obtaining community approvals from the two sites was different because the political and administrative structures of the sites were different in terms of the de facto “gatekeeper” and was apparent when seeking community approvals. Written approvals were easier in Gwanda than in uMkhanyakude. In the latter, the gatekeepers were not familiar with the requirement of issuing a letter stating that they had granted permission. One of the headmen asked,
“Why does the university now require actual letters? We usually get notice of medical students coming to the local clinic for periods of time and we just give verbal permission. Now what has changed? Does the university no longer trust the verbal approval of the tribal council?”
After negotiation on the wording required by the Biomedical Ethics Committee (BREC) at the University of KwaZulu-Natal, the chief gave the headmen permission to issue letters.
In contrast, in Zimbabwe the process of obtaining an approval letter was a familiar process. The administrative system of the Rural District Council (RDC) where the Councillors report has a protocol for the process for NGOs that comes into the area with developmental projects. The following of a protocol and issuance of an approval letter is a requirement for all organizations that come into the community for any activity. This process was followed by the MABISA project getting an approval letter from the RDC, DA and councillors. These letters were then taken to the National Ethics Committee (Medical Research Council of Zimbabwe) for the issuance of ethics approval letters. Despite these differences both sites issued MABISA project community approvals, which were taken to the institutional ethics committees for the issuance of full ethics approval.
Research literacy
A distinct similarity of the communities was that both had low research literacy. The KII revealed that both communities had very minimal experience with health research. This was validated during the PRAs, where the communities stated that they were accustomed to government programmes and NGO needs assessment surveys that mainly used the information for service provision and distribution of food or mosquito nets.
The response from one of the headmen from South Africa after being asked about the community experience with research was as follows:
“…There has been Census, Malaria Control Programme evaluations, since 1973 they test and treat people in the villages…” (Headman #1)
In Gwanda, the councillors were also familiar with NGO project evaluations and needs assessment surveys. However, the nurses did mention that there had been few studies, especially by university students who collect secondary data for their projects, but none had been community-based research projects.
During the PRAs the community members at both sites indicated that basic research processes such as consent, data collection techniques and results dissemination were unfamiliar to them. The MABISA team explained research concepts during the PRAs so as to sensitise the community members to the type of activities the project would be carrying out in their communities. It was also agreed with community members that the MABISA team had to embark on an awareness programme with the community leaders, the community advisory boards (CAB) and the clinic nurses to ensure that they would cascade project information to the communities. This strategy was effective in keeping the communities informed about project activities and at the same time preventing confusion, myths and misconceptions on the activities of MABISA. The project held community feedback meetings twice a year during which special sessions on research processes and the rights and roles of the community were discussed.
Establishing community advisory mechanisms
The MABISA research team explored various mechanisms to stay informed about the community’s perception of the project and to remain socially and culturally relevant. The research team proposed three known advisory strategies to the community, namely the formation of community advisory boards (CABs), having a community liaison officer (CLO) and using local community leaders (LCL). The research team was cognisant that the establishment of these mechanisms should not create another bureaucratic structure that would be in conflict with what already existed in the communities. Each community was given a choice to choose what was best for them. Communities from both countries chose to form CABs with representation of a wide range of community stakeholders.
The uMkhanyakude site chose to remain with the community liaison officer already functional and in addition formed a CAB and used the LCL as part of the informal advisory mechanism. The CLO was familiar with the site because of previous experience of working in the malaria control programme in the same area. The main role of the CLO was to introduce MABISA to the community, make appointments with the headmen of the sites for introductory meetings, organise accommodation and advise the team of the village boundaries. The introductory meetings were successful at each village mainly due to the role played by the CLO whom they felt was “one of their own”.
The study team briefed each headman on the terms of reference of the CAB [27, 28] before the selection process. Members were selected by the communities at their local meetings, known as Imbizo, in the absence of the MABISA team, as this was a community activity. The CAB was formed by equal membership selected from the four villages. A 12 member CAB comprising of one headman, two community leaders, three school board members, three community care givers and three ordinary community members was established.
In Gwanda once the terms of reference for the CAB were shared with the communities, they decided to form two CABs and use the LCL strategy as well, since villages are far apart. The communities that chose to have CABs decided to use existing committees, with slight modifications as required, to fulfil the requirements of a CAB. In one ward they utilised the Ward Health Team (WHT), which has close to 30 members, and they decided to use only the Village Health Workers (VHW) to form the CAB because they represented every village. However, after training the CAB was further modified to have stakeholder representatives such as teachers, extension workers, religious leaders and the councillor. The other ward used the Health Centre Committee (HCC) to form the CAB. It already had representatives of all the villages and also had a wide stakeholder representation. Once the CAB was fully functional the need for a full time CLO fell away because the community now had direct contact with the study team through the CAB and LCL.
All CABs organise biannual community feedback workshops. They disseminate information regarding the workshops at village level well in advance of the dates of the workshops. MABISA provides the CABs with technical and financial support which is disbursed quarterly to cater for their transport and food costs during meetings. The technical support is through training, when required.
Community empowerment
One of the objectives of the MABISA project is to develop and strengthen capacities among research groups and communities to enable them to assess and mitigate population health vulnerabilities related to malaria and schistosomiasis. At the project’s inception, the project team committed to utilising participatory methods in order to empower communities, increase involvement, legitimise the project and ensure community ownership and sustainability. Strategies that the study is using to empower the communities include both engaging and training community research assistants and utilising a citizen science approach.
Engaging community research assistants
In order to enhance community participation and involvement, communities are responsible for selecting and recruiting community research assistants (CRAs) to work with the MABISA team. This recruitment was well received by both the Gwanda and uMkhanyakude communities and they nominated CRAs and presented them to the project. For both communities, the minimum qualifications were a matric, for uMkhanyakude, and a GCE Ordinary Level for Gwanda, and that the recruits should have enough time and flexibility for part time employment.
The CRAs are responsible for assisting the MABISA team in recruiting study participants, obtaining consent, and for data collection. The CRAs also help in developing trust between the community and the researchers, as they are familiar with the local people. Hiring of CRAs assured both individual and community empowerment. The intention of the project, as was communicated during the PRA workshops, is to have these individuals remain in the community as resource persons in dealing with malaria, schistosomiasis and climate change. The principal investigator was quoted saying
“…we recruit what we call community research assistants who remain with skills in the society for the future…”
Unemployment was high in both communities, although some CRAs had some prior work experience. The CRAs from uMkhanyakude comprised of high school graduates, community care givers, and college students. The CRAs from Gwanda comprised of high school graduates, two former temporary teachers and one former veterinary assistant. None had ever done health research before.
The CRAs were trained to attain the required skills for the field work. The curriculum was standardized at both study sites and it included research ethics, epidemiology of malaria and schistosomiasis, basic research methods, quality control and technical skills for data collection. The technical skills imparted included, organising teamwork and daily work activities. There was also a practical component where the CRAs did role plays of the consenting process and for approaching a household. They were also taken to the sampling points (rivers) and taught how to conduct sample collection and identify vector snails and mosquito larvae. The training was carried out over a week. At both sites educational background of individuals was the major determination of the assimilation rate of information during training. The CRAs that had some prior training in the health sector, such as the community care givers in uMkhanyakude, understood concepts quicker than those that had basic high school qualifications only. At the end of the training the University of KwaZulu-Natal gave them certificates of attendance. This provided them with evidence that they had been trained in research methods and ethics for a time when other opportunities arise in their communities.
Another shortcoming was the attrition rate at both sites. In uMkhanyakude the initial CRA team had 30 people, but after 1 year there were 11 left and two new recruits had to be hired and trained. In Gwanda there were initially 15 and after 1 year only seven remained and two new recruits were hired and trained. This attrition was mainly due to them finding permanent positions elsewhere, gaining entry into tertiary institutions and a few (three in Gwanda and four in uMkhanyakude) who felt the work was not financially rewarding. However, over time the study teams devised ways of working around the issue. In uMkhanyakude the persistent drought of 2014 and 2015 reduced the number of sampling sites and meant that the numbers of days in the field per month were reduced. In Gwanda the team utilised undergraduate research assistants who were attached to the MABISA study to collect data as well.
Another shortcoming was the ethical issues related to the CRAs’ familiarity with the community members that they interviewed. In Gwanda one of the CRAs said,
“…with my first set of questionnaires I had to interview within the village I live in and everybody kept asking me if I know what I am doing and if I could now diagnose people but diagnosing people with malaria is not part of my job as a CRA …people also try to send me with messages to the project team and I feel burdened by that sometimes…”
In uMkhanyakude the CRAs that were already community care givers related that:
“…the community members sometimes mix issues because occasionally the sampled house is already a patient of yours. When you ask them questions they sometimes ask why I have to ask questions yet I know them already, so I asked the MABISA team if I could swap with another CRA if I see a patient of mine…”
Despite this challenge the CRAs are an integral part of the project team. The study team confirmed that the CRAs contribute beyond their formal job descriptions. They are able to provide local context information that helps with project implementation. The CRAs also help with community sensitization towards the project’s activities by answering questions when they arise outside the study teams’ field days. The CRAs also serve as a community resource for malaria and schistosomiasis and are invited to talk about malaria and schistosomiasis during community meetings to enhance information dissemination. To keep the CRAs motivated the field allowances were increased periodically and they received bicycles for field work so they would not have to walk.
Utilising a citizen science approach
One of the project activities is to develop a community-centred early warning system (CBMEWS) that the community can utilise to predict weather patterns and then be able to lessen the transmission and control of malaria and schistosomiasis. In an effort to increase the community’s research literacy and translate scientific knowledge into action, the Gwanda study team decided to use citizen scientists to collect indigenous knowledge data. Citizen science involves the use of the general public in a community to collect research data collaboratively with trained scientists [19]. It is participatory in nature and it is well suited for increasing public understanding of research [19]. For example, the project utilises community elders to collect data on indicators of weather conditions that may exacerbate malaria. They are also able to indicate the plants, animals and astronomical signs that are used traditionally to predict rainfall patterns and quantities and to relate the indicators to the occurrence of malaria. To motivate participation of these elderly volunteers, the MABISA project will award the participants “citizen certificates” to recognize their efforts. They too will then become a community resource and will assist the community with weather predictions [29].
Initiating sustainable post study activities
At the beginning of the project the study team made their intention clear of fulfilling the ecohealth pillars of knowledge to action and sustainability. The best way to do this was to ensure that once the formal MABISA project ended, the community would be able to use the skills and knowledge learnt by the CRAs and the community members to prevent and control malaria and schistosomiasis. The project principal investigator said in an interview,
“…Empowerment is an on-going process and at one of our meetings we mentioned that we should have capacity building going on and we train the community to continue with the activities even after the research …”
More than any other component of the training, the communities are all eager to continue with snail identification work. This is because the gap they identified from the work done by the community health workers was that they have material on the prevention and treatment of malaria and schistosomiasis, but they do not know about the vectors that transmit and carry these diseases. In uMkhanyakude they indicated that malaria and schistosomiasis affected them directly and they wanted to learn how to identify vector snails and mosquitos to prevent them from breeding and to advise their community members to avoid infected waters. In Gwanda the feeling was the same and one of the councillors was quoted as saying
“…we appreciate the parasitology work being done by the parasitology team. We see the work as simple to implement even after MABISA with the help of the Environmental Health Technicians, so we kindly ask if we can be assisted in coming up with activities that can be used by an ordinary villager…”
This shows that the communities were willing to continue with study activities for their own benefit. In order to ensure that most members of the community were informed, time was set aside during the PRAs and feedback workshops to do simple snail and mosquito larvae identification.
The other ongoing activity is to form partnerships and piggyback on the local NGOs’ activities. Whilst developing the CBMEWS in Gwanda, mentioned above, the team is working with NGOs in the area to incorporate the system onto their disaster risk management platform. This will allow villagers to use the early warning system for other purposes like agriculture and waterborne disease prediction. The communities have appreciated such sustainable activities because the CBMEWS is something they would continue to use even after the project’s life span. The CBMEWS was subsequently integrated into the WHT’s disaster risk management programme [29].