A model for community representation and participation in HIV prevention trials among women who engage in transactional sex in Africa

Abstract

Actively engaging communities in effective partnerships for the design and implementation of HIV prevention research is vital to the successful conduct of ethically robust, locally-appropriate clinical trials in developing countries. This is especially true in vulnerable at-risk sub-populations, where definitions of “community”, “participation” and “representation” can be difficult to apply. This study was conducted to investigate the feasibility of a participatory model of community liaison among an occupational cohort of women at high-risk of HIV and sexually-transmitted infections in Mwanza City, northwest Tanzania in preparation for a Phase III vaginal microbicide trial. This approach was rooted in participatory action-orientated research and used tools adapted from participatory learning and action techniques. During the feasibility study, a mobile community-based sexual and reproductive health service for women working as informal food vendors or in traditional and modern bars, restaurants, hotels and guesthouses was established in 10 city wards. Participatory mapping was carried out by project fieldworkers and wards divided into 78 geographical clusters of facilities in consultation with community members and study participants. Representatives at cluster and ward level were elected in a process facilitated by the site Community Liaison Officer and a site-level Community Advisory Committee established. A logical framework was used to guide the implementation, monitoring and evaluation of the community liaison system (CLS) within the broader feasibility study. The CLS was essential to the successful conduct of the feasibility study and has now been consolidated and expanded as part of the on-going MDP301 Phase III microbicide trial in Mwanza. The participatory model presented in this paper is likely to be generalisable to other vulnerable, stigmatised, at-risk study populations in resource-limited settings.

Keywords:

• community
• participatory research
• microbicide
• clinical trial

Acknowledgements

Our special thanks go to the women of Mwanza who participated in the study and in particular to members of the Community Advisory Committee who gave invaluable advice and without whom this research would not have been possible. We thank our colleagues in the National Institute for Medical Research, Mwanza, Tanzania and the African Medical and Research Foundation, Mwanza, Tanzania for their support and assistance in carrying out this research. We also acknowledge the contribution of Sheena McCormack (Chief Investigator MDP301 Trial) and Richard Mutemwa (Community Liaison Group Coordinator), Microbicides Development Programme, Medical Research Council, London, UK. This study was funded by the Department for International Development and the Medical Research Council, UK.