One size does not fit all: An assessment of HIV linkage, retention and re-engagement programs in Southern states

Background: Linkage to and retention in consistent HIV care are goals of the National HIV/AIDS Strategy. Social determinants of health including stigma and poverty present barriers to reaching these goals in the South, where disproportionate HIV/AIDS incidence and case fatality rates are public health concerns. State health departments are uniquely positioned to identify patients in need of linkage/retention services, access client HIV data, and coordinate these services.

Methods: Telephone interviews utilizing a semi-structured interview guide were conducted with state health department representatives from the U.S. Census-defined Southern Region. The purpose was to explore the presence and structure of their state-run HIV care navigation programs.  Responses were summarized and compared across states.

Results: Fifteen of the 17 Southern Region states (88%) have currently participated in the study. Twelve states (80%) coordinated their HIV care navigation programs; six of these state health departments directly employed their navigators. In addition, overall strategies to link and retain patients, definitions of care engagement, and roles and training of navigators varied by state.  Similarities existed in retention-in-care challenges; the most commonly-cited systemic barriers included navigator responsibilities for vast geographic areas and data reporting issues. Patient barriers most frequently mentioned included stigma/fear of HIV disclosure, transportation, transience and perceived good health.

Conclusions: State health departments in the South utilize a variety of strategies to link, retain, and re-engage patients in HIV care.  Understanding the variety of linkage and retention efforts and their organizational oversight is important to identify approaches to address the HIV/AIDS burden in the South.