“We are together”: lived experiences and proposed mechanisms of a novel social network approach to optimize community-based HIV care and treatment in rural Western Kenya.
Authors: Charles R. Salmen; Matthew D. Hickey; Kathryn J. Fiorella, Richard Magerenge; Daniel Zoughbie; Dan Omollo; Brian Mattah; Robert Tessler; Harold Campbell; Katie Watson; Nancy Bui; Marcus R. Salmen; Caroline Christian; Elvin Geng; Monica Gandhi; Elizabeth A. Bukusi; Craig R. Cohen.
Background: Along the remote shores of Lake Victoria, Kenya, where HIV prevalence approaches 30%, the effects of HIV/AIDS are not limited to sero-positive individuals; rather, they result in chronic biologic, socio-economic, and ecologic disorders that disrupt entire social networks. Despite collective health burdens, infected individuals are frequently prevented from accessing social network support by intense HIV stigma. We describe the social network phenomena of ‘HIV risk induction’ to suggest that social networks have a vested interest in improving engagement with HIV care among infected members. These concepts provide support for a novel unit of HIV/AIDS intervention at the community-level in sub-Saharan Africa: the HIV-affected social network.
Methods: In 2011, our group launched a mixed methods cohort study to evaluate a community-based intervention known as the “microclinic” model across 22-month of follow- up. This intervention was designed to provide longitudinal training and facilitated testing and disclosure for patients on ART and members of their HIV -affected social networks on Mfangano Island, Lake Victoria, Kenya. He we report qualitative data from 18 focus group discussions that we conducted with microclinic participants (n=82), community health workers (n=40), and local program staff (n=39). Responses were coded based on themes identified by an interdisciplinary team of local Kenyan investigators, HIV/AIDS providers and medical anthropologists who participated in the intervention.
Results: Participants highlight four overlapping mechanisms through which the microclinic intervention impacted engagement in HIV care and treatment, namely enhanced treatment literacy, widespread stigma reduction, group testing and disclosure, and group support. Despite challenges, participants report an emerging sense of collective responsibility for care and treatment within intervention communities.
Discussion: The lived experiences and potential mechanisms highlighted by participants suggest important opportunities to transform the continuum of HIV care from a secretive individual journey into a network-oriented cycle of engagement.