Linkage to and Retention in HIV Medical Care: Perspectives from Peer Navigators and HIV-Infected Women

Introduction: In 2014, an estimated 55% of HIV-infected women in San Diego County who knew their status were not accessing HIV medical care. Through the CHANGE for Women Program at Christie’s Place, the only nonprofit organization providing gender-responsive services to women in San Diego, Peer Navigators (PNs) help HIV-infected women better negotiate their care. However, evidence suggests drawing support from one’s social support network may further strengthen patients’ care negotiation. We sought to explore barriers to care and the role of PNs and social support networks in the HIV care continuum process.

Methods: Between October 2014 and May 2015, we conducted a mixed methods pilot study among 3 Peer Navigators employed at Christie’s Place and 30 female HIV-infected clients aged 18-64 years enrolled in the CHANGE for Women Program. Audio computer-assisted self-interviews were used to collect demographic and HIV testing and treatment history data. Semi-structured interviews were used to provide in-depth exploration of barriers faced getting linked to and retained in care. For PNs, we also examined their experiences linking and retaining other HIV-infected women in care. For HIV-infected clients, we examined the utility of PNs and social support networks in the engagement and retention in HIV care.

Results: The PNs and female clients were ethnically diverse. All PNs identified similar themes in their clients’ barriers and backgrounds; among others, social isolation, violence and trauma, substance abuse, and mental health. PNs expressed that they often play a key role in the social support networks of their clients, operating not only as a service providing professional assistance but also as a confidante and friend. They also discussed that they fill in the gaps in their clients’ HIV-related care that service providers are unable to provide (e.g., transportation, doctor-patient mediation, counseling) which help to retain women in care. Women often reflected on their PN, and Christie’s Place, as being their primary source of social support. The majority identified family as a source of non-HIV-related social support. In effect, anticipated stigma related to their HIV status led many women to withdraw from their social networks altogether, or self-impose a social distancing between themselves and their social networks choosing to navigate their HIV treatment needs in isolation.

Conclusions: Our findings highlight the critical need for the integration of Peer Navigation services in HIV service organizations to improve linkage to and retention in care for HIV-infected women facing a multiplicity of barriers. Efforts are also needed to reduce stigma and social isolation to maximize improvements in HIV care outcomes.