Experiences from a community advisory Board in the Implementation of early access to ART for all in Eswatini: a qualitative study

Charmaine Khudzie Mlambo,Buyisile Shongwe,Roos Geut,Yvette Fleming,Eva Vernooij,Saima Jiwan,Eliane Vrolings,Gavin Khumalo

doi:10.1186/s12910-019-0384-8

Abstract

BackgroundEngaging communities in community-based health research is increasingly being adopted in low- and middle-income countries. The use of community advisory boards (CABs) is one method of practicing community involvement in health research. To date, few studies provide in-depth accounts of the strategies that CAB members use to practice community engagement. We assessed the perspectives, experiences and practices of the first local CAB in Eswatini (formerly known as Swaziland), which was implemented as part of the MaxART Early Access to ART for All study.MethodsTrained Swazi research assistants conducted two focus group discussions and 13 semi-structured interviews with CAB members who had been part of the MaxART study for at least 2.5 years. Interviews explored CAB composition and recruitment, the activities of CAB members, the mechanisms used to engage with communities and the challenges they faced in their role.ResultsThe MaxART CAB played an active role in the implementation of the Early Access to Art for All study, and activities mainly focused on: (1) promoting ethical conduct, in particular privacy, consent and confidentiality; (2) communication and education, communicating about the study and educating the community on the benefits of HIV testing and early access to HIV treatment; and (3) liaising between the community and the research team. Strategies for interacting with communities were varied and included attending general community meetings, visiting health facilities and visiting public places such as cattle dipping tanks, buses, bars and churches. Differences in the approach to community engagement between CAB members living in the study areas and those residing outside were identified.ConclusionThe experiences of the first CAB in Eswatini demonstrate that community engagement using CABs is a valuable mechanism for engaging communities in implementation studies. Considerations that could impact CAB functioning include clearly defining the scope of the CAB, addressing issues of CAB independence, the CAB budget, providing emotional support for CAB members, and providing continuous training and capacity building. These issues should be addressed during the early stages of CAB formation in order to optimize functioning.

Highlights

Engaging communities in community-based health research is increasingly being adopted in lowand middle-income countries
Is the scope of Community Advisory Board (CAB) members limited to discussing ethical issues highlighted by research teams during CAB meetings, or do they have a more independent role in monitoring study implementation to ensure research is implemented according to ethical standards? In the literature, there some accounts of CABs that engage with people in their surrounding areas/communities in the context of sharing information about the study and helping with recruitment and retention [14, 16, 19] but not in the context of protecting ethical standards or being actively involved in field activities during study implementation
In terms of the role of the CAB in the communication and education in the community, similar to a study conducted by Lwin et al [15], the study findings showed that the role of the CAB as understood by CAB members was much broader than originally envisioned by the study team

Summary

Introduction

Engaging communities in community-based health research is increasingly being adopted in lowand middle-income countries. Recognizing that the ethical implications of research can affect communities has opened up international debate on the values, goals and mechanisms of meaningfully involving communities in the research process [4, 8, 9]. These discussions have in turn resulted in several guiding documents and reports which promote good ethical practice [10,11,12]. The specific role of a CABs, as documented in the literature, includes: acting as a link between researchers and the community by establishing trusting relationships between the research team and the community [13,14,15,16]; educating community members about the research [16]; representing community concerns and priorities to the research team; providing the research team with insights into the social and cultural context within which the community operates; assisting in the development and review of research protocols, study materials and informed consent tools; promoting recruitment procedures; and disseminating study findings [17]

Methods

Results

Discussion

Conclusion