A Framework for Community and Stakeholder Engagement: Experiences From a Multicenter Study in Southern Africa

Abstract

Community and stakeholder engagement (CSE) are central to conducting multicenter health research. Multicenter studies are, however, considerably more complex because they involve a geographically diverse pool of participants and researchers, making uniform application of CSE strategies difficult. This article describes a framework to achieve CSE based on the experiences of a conducting a multicenter study in Southern Africa. The CSE framework is divided into three phases: before research commences, during, and after the study. This CSE framework offers a practical step-by-step guide on the operational aspects of CSE in a multicenter study. The framework shows the importance of consistent monitoring and evaluation during implantation of CSE.

Keywords

community stakeholders engagement participation evaluation

Introduction

In the past two decades, community and stakeholder engagement (CSE) have gained more prominence in health research as researchers recognized and acknowledged the importance of involving community members in all aspects of the research process: conceptualization, defining research questions, data collection, analysis, interpretation, dissemination, and uptake of research findings by having community inputs in the designing of research projects (Atlee et al., 2009; Israel, Schulz, Parker, & Becker, 1998; Lavery et al., 2010). Engaging the community in research makes researchers aware of the needs and priorities of the community, eliminates barriers to research participation, and results in research that is more sensitive to cultural norms (Holzer, Ellis, & Merritt, 2014; Israel et al., 1998).

Holzer et al. (2014) describes CSE as “a process of inclusive participation that supports mutual respect of values, strategies, and actions for authentic partnership” (p. 851) of people affiliated by geographic location, shared interest, or similar circumstances to address issues affecting community well-being. Mechanisms or strategies that researchers have used to engage the community include information delivery, consultation, collaborative decision making, community development, interactions with stakeholders, negotiation of agreements with local authorities, and seeking guidance from local community leaders (Marsh, Kamuya, Rowa, Gikonyo, & Molyneux, 2008; Nakibinge et al., 2009). These methods are not reported in literature as CSE strategies per se, but as part of the research process for diverse projects. Literature on CSE is fragmented, with very few publications describing a complete CSE strategy (Musesengwa & Chimbari, 2017a). There are ethics guidelines (Clinical and Translational Science Awards [CTSA] Consortium, 2011; HIV Prevention Trials Network [HPTN], 2009; H3Africa Consortium, 2014; Joint United Nations Programme on HIV/AIDS [UNAIDS] & AIDS Vaccine Advocacy Coalition [AVAC], 2011) and literature (Gappoo et al., 2009; Isler & Corbie-Smith, 2012; Nyika et al., 2010; Sapienza, Corbie-smith, Keim, & Fleischman, 2007) that can assist a researcher in CSE but the actual skill and detail of implementation is not prescribed (Kennedy, Vogel, Goldberg-Freeman, Kass, & Farfel, 2009). There are few reports on CSE strategies that have been utilized to ensure community and stakeholder participation (Alamo-Hernández et al., 2014; Alonso, Unger, Asse, Grace, & Gilbert, 2014; Effen, Aparicio, & Pardo, 2014). Most publications provide only retrospective information on specific aspects of the engagement process (IJsselmuiden & Faden, 1992; Pratt et al., 2015), making it difficult for a researcher to get a clear picture of how the CSE was conducted. More recent publications are focused on how to develop metrics or measurements and clear evaluation of CSE strategies applied to health research (MacQueen, Bhan, Frohlich, Holzer, & Sugarman, 2015; MacQueen et al., 2016).

Participatory approaches to research present challenges to CSE, such as conflicting agendas, power dynamics, manipulation, political/economic interference, unusual demand for time, huge commitment of financial resources and competing programs, especially those addressing water scarcity, hunger, poverty, and HIV/AIDS (Israel et al., 1998; Musesengwa & Chimbari, 2017a). These challenges are further compounded when the study is multicenter in nature. Multicenter studies are considerably more complex because they are multidisciplinary, multicultural, multicountry, involve multiple institutions, and have geographically diverse pools of participants and researchers (Diallo et al., 2005; Weinberger et al., 2001). Uniqueness and diversity of individual communities in multicenter studies makes their implementation more complex than single center studies. Thus, a CSE model for multicenter studies should be produced to offer researchers a practical approach for research processes in multicenter studies.

This article proposes a CSE framework for multicenter research, informed by experiences of a multicenter study conducted in three Southern African countries (Macherera, 2016; Macherera, Chimbari, & Mukaratirwa, 2017; Manyangadze, 2016; Musesengwa, Chimbari, & Mukaratirwa, 2017). The study sites were in remote, arid regions with research-naïve and vulnerable communities. Although the data collected were relevant to the CSE program of that study, the data are not presented in this article. The framework demonstrates the value of systematically evaluating CSE data from the community, stakeholders, and researchers as a study progresses to identify areas where adjustments are needed (Musesengwa et al., 2017). This article demonstrates how existing CSE guidance and literature can be applied to multicenter studies. The framework also demonstrates the value of utilizing multicenter data to inform a multicenter CSE strategy, to maintain uniformity while working in diverse research sites.

The Malaria and Bilharzia in Southern Africa (MABISA) Study

“MABISA” was a multicenter study focusing on social, environment, and climate change impact on vector-borne diseases in Botswana, South Africa, and Zimbabwe. The MABISA study commenced in 2013 and ended in September 2017. The main objective of the study was to determine the impact of socioeconomic, environmental, climatic, bionomic, and institutional factors on malaria and schistosomiasis in specific rural vulnerable communities in arid areas of Botswana, South Africa, and Zimbabwe with a view to develop stakeholder-driven adaptation strategies. The MABISA study used an ecohealth approach emphasizing transdisciplinarity, community participation, gender equity, systems approach, sustainability, and knowledge to action (Musesengwa et al., 2017). Mixed methodology including descriptive, analytical, qualitative, cross-sectional, and experimental design aspects was used. Informants for the CSE data were purposefully sampled based on their involvement in the CE activities and their knowledge of the MABISA project implementation.

The study team developed a CSE strategy that was uniform in principle, including all three countries (Musesengwa et al., 2017). The strategy was designed to include a systematic collection and evaluation of CSE data from all study sites, stakeholders, and researchers as the study progressed. The monitoring and evaluation (M&E) was nested within the CSE strategy, and it allowed real-time evaluation of the community engagement practices to identify areas where adjustments were needed. The aim was to have the CSE strategy as uniform as possible across the sites and the three countries. Data from CSE strategy implementation were used to inform CSE framework proposed in this article.

The CSE Framework

A Framework for CSE in Multicenter Research

The CSE framework (Figure 1) we describe and propose is more appropriate for multicenter studies, but can be adapted for single-site studies. The framework was informed by the UNAIDS Good Participatory Practice (GPP) Guidelines for Biomedical HIV Prevention Trials (UNAIDS & AVAC, 2011) and by a scoping review (Musesengwa & Chimbari, 2017a) of CSE strategies in the three MABISA countries. The review (Musesengwa & Chimbari, 2017a) provided contextual guidance of reported CSE strategies, challenges, and successes. The scoping review also provided guidance on culturally acceptable activities in the three countries. The guidelines (UNAIDS & AVAC, 2011) provided MABISA with systematic guidance for our CSE strategy and describes how to effectively engage with stakeholders in the design, conduct, and outcome of biomedical HIV prevention trials—but can be adapted for other purposes.

Figure 1.

CSE in multicenter research.

The proposed framework is divided into three phases: before the study begins, during the study, and after the study.

Phase 1: Before the Study Commences

The goal of this phase is to gather information about the community and its stakeholders and to begin the process of relationship building. The phase should involve formative research (UNAIDS & AVAC, 2011), obtaining necessary approvals from all relevant authorities, and initiating contact with the community. This phase includes formative evaluation to ensure that the CSE strategy takes into consideration both the community and the identified stakeholders’ views. Formative research activities involve gathering information about a site to ensure that the research is both culturally and geographically appropriate. In most studies (Anticona, Coe, Bergdahi, & San-Sebastian, 2013; Musesengwa & Chimbari, 2017a), formative research activities usually constitute the initial phase of community and stakeholder analysis, outreach, and engagement. During this stage the goals of the CSE strategy need to be collaboratively developed to allow for the strategy to be continuously monitored and evaluated by both the community and the researchers throughout the research process (UNAIDS & AVAC, 2011).

The evaluation process for Phase 1 should involve soliciting opinions from the community and the researchers for comparison and reconciling with any divergent opinions. This initial evaluation should be focused on enhancing the likelihood of success of the CSE strategy and will result in adjustments to the CSE strategy. The formative evaluation allows a study to ensure that views from community, stakeholder, and researcher perspectives all contribute to the development of the CSE strategy. The questions asked during formative evaluation are generally more open and lead to exploration of processes, not only from the viewpoint of participants but also from that of project staff and other stakeholders (MacQueen et al., 2012; UNAIDS & AVAC, 2011). The type of evaluation should match the goals of the CSE strategy. It enables the study team to collect information on potential barriers and opportunities for engagement.

In research-naïve environments, the study team may propose a draft CSE strategy to the communities, which can be further developed collaboratively. In such environments, the study should develop a capacity building plan that includes increasing research literacy sessions (Brody, Dalen, Annett, Scherer, & Turner, 2012; Goodman, Dias, & Stafford, 2010; UNAIDS & AVAC, 2011). These capacity building activities will have possible negative implications on study timelines, the budget, and the human capital needed to conduct the capacity building.

In multicenter studies, researchers should expect to encounter differences between sites regarding governance, administrative, political structures, cultural norms, and language (Musesengwa et al., 2017; UNAIDS & AVAC, 2011). Such differences will mean that the de facto “gatekeeper” keeps changing across sites affecting how approvals will be obtained in each of the sites. Multiple languages in the sites will mean multiple translations and back translations of documents while trying to maintain the same meaning across sites. These differences should be accommodated in the study plans to ensure less disruption of activities. The evaluation of data collected from all sites enables the researchers to consolidate the information and ensures that the principles of the CSE strategy remain the same even though implementation might vary. After evaluation, areas where adjustments need to be made in each site should be identified and strategies to implement the changes across the sites need to be developed. The CSE strategy that will be developed will be more similar in principle than in the actual implementation of activities (Musesengwa et al., 2017; UNAIDS & AVAC, 2011).

In the MABISA study, this phase consisted initially of desk reviews to ensure that site selection was appropriate and in line with study objectives. This was followed by meetings with community leaders to obtain community approvals from the political, administrative, and traditional authorities. At this stage, suggestions of how the study team should approach CSE were discussed and community meetings were recommended as the first step in the engagement process. The CSE strategy was developed during these sensitization meetings. The issue of forming Community Advisory Boards (CABs), developing a M&E plan for the CSE strategy was also discussed at these meetings with the community members, leaders, and stakeholders (Chimbari, 2017; Musesengwa et al., 2017). This was the longest phase of the CSE strategy as this needed to be done at the pace at which the sites allowed. The sites were research-naïve and MABISA had to give the communities adequate time and information to make decisions to participate in the study (Musesengwa et al., 2017).

Phase 2: During Study Implementation

In the second phase, research occurs simultaneously with continuous monitoring and participatory evaluation to ensure that the CSE strategy remains relevant to all sites and stakeholders. The goal of this phase is to balance CSE activities and research implementation through maintaining the relationships formed in Phase 1. CSE activities should be focused on maintaining trust, opening communication channels within and among the sites, managing feedback from the community, stakeholders, and research teams, building capacity for CSE while upholding uniform ethical research standards. Maintaining trust in health research is based on being accountable to communities and stakeholders. Regularly sharing information on research activities and involving participants in decision making during the research process is vital (Macherera & Chimbari, 2016). Sites need to be appraised of implementation activities at other sites and sharing with them the similarities and differences between one site and the next (Musesengwa et al., 2017). Duplicating activities should be mutually decided by communities, stakeholders, and researchers. For instance, one of the principles would be to have stakeholder advisory mechanisms (Musesengwa & Chimbari, 2017a; UNAIDS & AVAC, 2011) across all sites, but sites may choose different structures. One site may opt to have a CAB and another might choose to utilize an existing committee not necessarily constituted as a CAB but to play the same role of advising the researchers (Musesengwa et al., 2017).

During this phase, time, financial, and human resources need to be invested to prevent the CSE from being overshadowed by study activities. CSE activities are best handled by study staff members who can work with diverse groups of people. There is a need to build capacity of research teams to conduct CSE to have meaningful engagement. Research staff should develop the skills to communicate messages harmoniously between the community and study teams (UNAIDS & AVAC, 2011). In multicenter studies, the sharing of information among research sites may lead to unnecessary duplication of activities as sites “compete” to have similar structures. Communities and stakeholders also need to develop the skills to understand their own contexts and discern which activities apply to them. For instance, a particular site may choose to use local research assistants due to language barriers between the researchers and the community, while in another site this might not be necessary if the researchers know the language. This may be misconstrued by other sites as the researchers not being interested in involving locals in data collection.

To ensure that CSE is effective, the strategy must include a process evaluation plan that is participatory in nature (Diallo et al., 2005). Zukoski and Luluquisen (2002) describe participatory evaluation as reflective and action-oriented, and providing researchers, stakeholders, and communities with the opportunity to reflect on progress. This will allow researchers to take corrective action and make mid-course adjustments. Similar to Phase 1, the challenge may be about budget and time. Meticulous coordination of the evaluation process and CSE are required to prevent disruption of study activities (Chimbari, 2017; Musesengwa et al., 2017).

In the MABISA study, roles and responsibilities were assigned to different players including community members. Country coordinators were assigned to ensure that the community leaders were consistently updated on study activities monthly (Musesengwa et al., 2017). CABs were responsible for collecting information on community perceptions and concerns about the study and fed back to the study team monthly or as required. This provided a platform for the CAB and the study team to deal with issues arising from the community. Community leaders were tasked to ensure that the study would not disrupt any community activities and ensure that the community calendar was regularly updated to avoid scheduling clashes. The study team had a M&E specialist, communications officer, and a research ethicist to collect evaluation data on the CSE strategy. Those assigned different roles in all sites (community members, stakeholders, CAB members, data collectors, research team) met twice a year at each site and annually as combined site teams (Musesengwa et al., 2017).

This transdisciplinary and participatory approach meant that the study team needed committed leadership to ensure that data from all teams was consolidated and analyzed in real-time for action to be taken when needed (Chimbari, 2017). For instance, at one site communities requested maps of where disease vectors had been identified in proximity to schools. The study team complied with these requests. These maps were then developed for all sites. This information added social value to the study without diverting from the objectives of the MABISA study (Musesengwa et al., 2017).

Phase 2 also involved capacity building for both the study teams and communities. Study teams had to ensure that they were adequately prepared to maintain CSE during study implementation. The MABISA study had numerous community activities which were also capacity building opportunities for the community. For instance, community research assistants (CRAs), Citizen Science Groups, CABs, and community leaders had to undergo research literacy training to participate in the study (Holzer et al., 2014; Israel et al., 1998). The research training included basics of scientific research, data collection methods, confidentiality, research ethics, and use of study equipment such as GPS equipment. All MABISA sites were research-naïve and had minimal appreciation of research processes. The first 6 months of the study were dedicated to bringing communities to the level where they could participate in the study as researchers, advisors, and participants. This training continued for the duration of the study and when a need was identified. A limitation of the capacity building exercise is the lack of an objective and metric measure of how to assess when a community is ready for research participation (Brody et al., 2012; Goodman et al., 2010). In the MABISA study, this was assessed during the piloting of data collection instruments and during a dry run of actual research activities (Holzer et al., 2014; Israel et al., 1998; Macherera & Chimbari, 2016). To ensure uniformity, the MABISA study used the same training team throughout the study. In addition, each site had a local context facilitator who understood cultural norms. This approach—training communities and study teams—requires time, financial resources, and committed training staff. During the annual MABISA meetings community members and stakeholders had protected time to share CSE ideas (Chimbari, 2017; Macherera & Chimbari, 2016; Musesengwa et al., 2017).

After the Study

Upon completion of the study, summative evaluation can be used to examine the overall performance of the CSE strategy. Summative evaluation facilitates understanding of what worked, what did not, and reasons for each (Rossi, Lipsey, & Freeman, 2004; Zukoski & Luluquisen, 2002). The summative evaluation should be measured against the initial goals of the CSE strategy developed at the beginning of a study (CTSA Consortium, 2011). This knowledge will improve the development of future CSE strategies and their implementation. During this stage, it is possible to evaluate the ability of the community to apply scientific research methods learnt during the study to address problems affecting them. Research uptake can also be measured at this stage.

The MABISA study utilized qualitative methods to conduct the final evaluation of the CSE strategy. The evaluation was based on the initial goals of the CSE strategy from all phases. This included information sharing, capacity building, maximizing community participation, and ensuring sustainability of community-driven adaptation strategies poststudy. Community members, stakeholders, and researchers were interviewed as individuals or in groups and their overall experience and evaluation of progress, or lack of it, was documented (Musesengwa et al., 2017). The evaluation involved assessing uptake of the MABISA study by the stakeholders and the community members, and assessing whether the research results contributed to policy formulation. In multicenter studies, the data needs to be analyzed both per site and aggregated/combined. Effectiveness of any strategy or activity used needs to be analyzed against the context in which it was applied. Effectiveness of the stakeholder advisory mechanisms and capacity building initiatives should be evaluated as per site needs. It is important to note that when combining the data that even though the actual activities might have differed, the principle itself was applied at all sites. The evaluation results should be shared with all sites so that they can provide their perspective on what they perceived to be effective or not. This can then also be compared with researchers’ perceptions (Chimbari, 2017; Musesengwa et al., 2017).

Implementation of the Framework

The framework is simple in principle but there is a need for careful planning and consideration of enabling factors, opportunities for CSE, and associated challenges. These are outlined briefly below.

Enabling factors

In Phase 1, formative research should identify factors that enable success of the CSE process. This can be done by characterizing the community to ensure that the research is well understood and that the researchers build a cordial relationship with communities and stakeholders. Enabling factors include the following: identification of existing stakeholder relationships, community leaders’ willingness to engage, communities’ research literacy, and competency and ability to identify differences between the sites (Anticona et al., 2013; Kamuya, Marsh, Kombe, Geissler, & Molyneux, 2013; Marsh, Kamuya, Mlamba, Williams, & Molyneux, 2010; Marsh et al., 2008). In a multicenter study, these factors need to be labeled as those that are site-specific and those that might affect the conduct of the study at all sites. For instance, differences in administrative structures will affect approval processes, especially ethics approvals. In multicenter studies, most research ethics committees will request to see approvals from the other sites. This leads to long approval processes as researchers negotiate their way through approval processes (Chimbari, 2017).

Another major enabling factor is willingness of funders or sponsors to commit resources to the CSE process (Chimbari, 2017; Holzer et al., 2014; Isler & Corbie-Smith, 2012). Phase 1 is the longest phase of the CSE strategy as this takes time, patience, and resources because of site variations. Sponsors might not be willing to commit resources to both research and CSE.

In Phase 2, the study team has to create an enabling environment that sustains CSE. Similar projects (Alamo-Hernández et al., 2014; Alonso et al., 2014; Fraser, Dougill, Mabee, Reed, & McAlpine, 2006) created platforms such as “participative spaces,” “participatory workshops,” and “technical committees” where communities collaboratively planned, prioritized, or evaluated projects to identify community needs. The MABISA study conducted bi-annual site-specific participatory rural appraisal (PRA) workshops where the communities performed skits and poems on what they understood about the study and what they wanted the study to address. The annual forums then created opportunities for sites to interact with each other (Musesengwa et al., 2017). In multicenter studies, these fora have to be carefully managed as this bring together community members and stakeholders from different cultures, countries, and languages.

Common challenges arise because multicenter studies will most often have research teams that have different standards and research practices across their respective disciplines (Chimbari et al., 2014; Isler & Corbie-Smith, 2012). Researchers have to learn to engage a community through promoting equal participation, yet remain as agents of knowledge. This requires that researchers manage the interpersonal, political, and social dynamics of a participatory process (Anticona et al., 2013). Most researchers have good training in scientific methods but are ill-equipped to navigate the social, cultural, environmental landscape to engage study communities, manage conflict, exercise collaborative problem solving, and understand how various forms of oppression may operate within partnerships (Anticona et al., 2013; Diallo et al., 2005; Holzer et al., 2014; IJsselmuiden & Faden, 1992). There is a need for research leaders to assess the capacities of an interdisciplinary team to engage with each other as researchers, and with more diverse research communities in different sites.

The MABISA leaders overcame this challenge by providing the necessary support for the study team when required. The study team had experienced team leaders who had previous training and experience (Chimbari, 2017; Chimbari, Chirebvu, Mangoma, & Mtetwa, 2005; Chimbari et al., 2014; Thakadu, Ngwenya, Magole, & Chimbari, 2015) with projects involving large transdisciplinary research teams. The MABISA team had three principal investigators, one overall study coordinator, three country coordinators, three postdoctoral fellows, seven PhD students, and three masters’ students. The team had eight social scientists, two lab scientists, and one each from the following specialties: veterinary science, epidemiology, statistics, geographic information systems (GIS), clinical medicine, research ethics, health economics, and environmental science. MABISA conducted several team building sessions and in-house training to integrate research methodologies and tools across the various specialties (Chimbari, 2017).

Limitations

This multicenter CSE strategy will be most appropriate for long-term studies lasting more than 1 year at least. It is very time consuming and may not be applicable to short-term studies. Studies that have limited funding might not be able to carry out elaborate M&E and funders might not be willing to spend more on CSE than on the science. The implementation of the MABISA multicenter CSE strategy was well-funded which enabled the development of this framework. In other multicenter studies, it might not be possible to carry out such rigorous data collection on CSE across sites.

The MABISA CSE strategy was also elaborate because it was an Ecohealth project. The Ecohealth approach is participatory in nature and this had an influence on the development of the proposed framework. Community and stakeholder participation are core principles in Ecohealth research methodology (Burger, Gochfeld, & Fote, 2013). In studies where community and stakeholder participation are not one of the core methodologies or requirements, an elaborate CSE plan such as the one presented here might not be as necessary. Researchers might need to streamline activities to suit their study methods.

The other limitation is that M&E of CSE activities can be challenging because developing indicators of successful CSE can involve intangible dynamics. Some indicators of success might not be directly attributable to the CSE activities but to the project itself. For instance, retention of participants might be related to the value the participants attach to the disease under study rather than the CSE activities (MacQueen et al., 2012). M&E also requires skilled facilitators to ensure that stakeholders and community members understand the process and are equally involved. The other limitation which is inherent in conducting M&E in CSE is the interpretation of “success”—success must be viewed from both the participants’ and researchers’ points of view (Musesengwa & Chimbari, 2017b).

This framework was primarily informed by the MABISA study, potentially limiting its applicability to similar community-based participatory projects. The fact that all three authors of this article are also researchers might have influenced our interpretation of the process and outcomes of this CSE framework.

Conclusion

The CSE framework described in this article was developed through implementation of the MABISA study. The framework outlines operational aspects of CSE in a multicenter study setting. The framework articulates CSE during various phases of a study, highlighting the need for continuous M&E of the effectiveness of the CSE strategy. It can serve as a guide for other research teams when designing and planning their own CSE strategies. This guide can be adapted for use in other multicenter studies different from the MABISA study. The frequency and scope of evaluation will need to be adjusted depending on the length of the study and the goals of the CSE. CSE can be successfully implemented in multicenter research projects, including research with research-naïve communities.

Best Practices

It is recommended that, where applicable, studies implement some form of CSE, although this might not be possible for all types of studies. Although extensive CSE was possible in the MABISA study, it might not be appropriate for short-term studies. The intended synthesis of evaluation results at each stage to maintain uniformity across sites might not be appropriate for studies that are conducted in multiple countries. The most important aspect of the framework that must not be omitted in the conduct of any study is the formative research component to understand differences and diversity within and between communities. Another important aspect is to budget for CSE and assign study personnel specifically to this activity.

Research Agenda

The MABISA study experiences showed that there is very limited GPP guidance on broad CSE. Most GPP guidance (AERAS, 2017; Critical Path to TB Drug Regimens, 2012; UNAIDS & AVAC, 2011; World Health Organization [WHO], 2016) is subject-specific and requires adaptation. Broader, more general GPP guidelines should be developed and contain CSE recommendations to be used by other types of studies. There is also a need to develop CSE guidance that is relevant for short-term studies.

Educational Implications

CSE is a relatively new area in research ethics and is now finding its way into ethical codes such as the recently revised Council for International Organizations of Medical Sciences (CIOMS; 2016) guidelines which dedicate a chapter to community engagement. Just as there was a drive for research ethics training of research teams several years ago, there should be a corresponding drive for training and skills in CSE. There should now also be a corresponding shift for research ethics committees to start demanding CSE plans from all studies where applicable. Applications for multicenter studies should show how the CSE will be carried out at the all sites. There is also a need to have capacity building in this area for research ethics committees to appreciate the requirements for CSE so that they can evaluate the adequacy of CSE plans during ethics review.

Footnotes

Acknowledgements

We are grateful to the Malaria and Bilharzia in Southern Africa (MABISA) team for allowing us to collect data as they worked. We are grateful to Dr. T. Manyangadze for reviewing this article and approving it as a true record of MABISA’s activities. We are also indebted to the Gwanda and uMkhanyakude communities for allowing us to work with them.

Declaration of Conflicting Interests

The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: This work was part of R.M.’s PhD thesis, titled “Community Engagement Strategies and Experiences in a Multicenter Study in South Africa and Zimbabwe.” The other authors (M.C. and S.M.) have no competing interests.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by a PhD Scholarship from the University of KwaZulu-Natal. The Malaria and Bilharzia in Southern Africa (MABISA) project was funded by the World Health Organization (WHO) Special Program for Research and Training in Tropical Diseases (TDR) and the Canadian International Development Research Center (IDRC). These institutions have no conflicting interest in the research.

ORCID iDs

Rosemary Musesengwa

Samson Mukaratirwa

Author Biographies

Rosemary Musesengwa is a bioethicist and works for the Medical Research Council of Zimbabwe. She is involved in empirical and conceptual research into community engagement of multicenter studies. She led on all aspects of the paper’s development from conceptualization to finalization.

Moses J. Chimbari is the dean of research in the School of Public Health, University of KwaZulu-Natal. He is the principal investigator for the Malaria and Bilharzia in Southern Africa (MABISA) study. He was involved in the conceptualization and reviewing of all drafts of this article.

Samson Mukaratirwa is the dean of the School of Life Sciences at the University of KwaZulu-Natal. He is a coprincipal investigator for the MABISA study. He was involved in the conceptualization and reviewing of all drafts of this article.

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