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An iterative approach to respondent driven sampling (RDS) using community-based participatory research (CBPR) among men who have sex with men (MSM) and sex workers ( SWs) in Swaziland D. Adams 1 , X. Mabuza 2 , Z. Mnisi 3 , S. Maziya 2 , R. Fielding-Miller 4 , C. Kennedy 1
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An iterative approach to respondent driven sampling (RDS) using community-based participatory research (CBPR) among men who have sex with men (MSM) and sex workers (SWs) in Swaziland D. Adams1, X. Mabuza2, Z. Mnisi3, S. Maziya2, R. Fielding-Miller4, C. Kennedy1 1Johns Hopkins Bloomberg School of Public Health, Baltimore, United States, 2Indlu Yelitsemba (House of Hope), Mbabane, Swaziland, 3Ministry of Health - Swaziland, Mbabane, Swaziland, 4Emory University Rollins School of Public Health, Behavioral Sciences and Health Education, Atlanta, Georgia Abstract Results Swaziland's first bio-behavioral surveillance of MSM and SW changed due to community feedback. Due to the illegal and highly stigmatized nature of these populations, community-based participatory methods were employed to ensure research relevancy, uptake, and participation. RDS is a ticket-based accrual method used to reach hidden populations. Meaningful and continuous involvement of community members can address practical challenges and help to ensure study success when using RDS among hidden populations. • In the beginning, the CBPR strategy was the same for the two populations, but as distinctions emerged, the study team shifted the response: • LGBT/MSM • Preferred meeting in private homes of community members • Slow accrual - MSM uncomfortable with sharing research site with a different population; accrual picked up after SW accrual completed and became dedicated MSM site • One central CAC – efficient broader community feedback • Actively volunteered to be engaged and integrated into study design and implementation • Named the study “Vakala” (Be Heard) • Gave detailed feedback on ticket design, site operations, and employed on the study team • SWs • Comfortable with meeting in public spaces • Efficient accrual due to pre-existing networks • Four regional CACs - mixed results with community feedback • Mixed participation – assisted with translations, pilots, and entryways into different SW networks Introduction Swaziland is a country in Southern Africa, sharing a border with South Africa and Mozambique. In January 2011, the Swaziland Ministry of Health, Johns Hopkins School of Public Health, and USAID implemented an integrated bio-behavioral surveillance survey among MSM and SWs using RDS. The lesbian, gay, bisexual, and transgender (LGBT) and SW communities were approached to not only endorse the project but participate in the conceptualization, development, implementation, analysis, and data dissemination. Methods Figure 2 Community-designed tickets used to accrue participants using RDS Study investigators engaged LGBT community groups and SW support networks in formative research process Initially implemented same strategy for both groups (see Figure 1): Informal community engagement to introduce study and ascertain engagement design Forming community-member elected Community Advisory Committees (CAC), one for LGBT/MSM and one for SW that met separately and independently of each other CAC members provided crucial community feedback, concerns, and advice for the research team Research team disseminated study updates broadly through CAC Study investigators directly interacted informally with community members Conclusions After many hurdles, the study reached recruitment targets while continuously engaging community members. The engagement of the SW and LGBT communities were crucial to reaching accrual targets and laying the groundwork for subsequent interventions. Meaningful and continuous involvement of community members can address practical challenges and help to ensure study success when using RDS among hidden populations. To capitalize on the organizational and network capacity developed during the study, operations research and evidence-based programs are needed to engage the Swaziland MSM and SW communities in intervention design and implementation. Contact Darrin Adams, MS Public Health candidate daadams@jhsph.edu Johns Hopkins School of Public Health Department of International Health Figure 1 Community-Based Participatory Research Engagement Strategy: A Conceptual Framework www.jhsph.edu/R2P The study was implemented by USAID | Project SEARCH, Task Order No.2, which is funded by the U.S. Agency for International Development under Contract No. GHH-I-00-07-00032-00, beginning September 30, 2008, and supported by the President’s Emergency Plan for AIDS Relief. The Research to Prevention (R2P) Project is led by the Johns Hopkins Center for Global Health and managed by the Johns Hopkins Bloomberg School of Public Health Center for Communication Programs (CCP). Presentedat AIDS 2012 – Washington, D.C., USA