"Hurdles on the path to 90-90-90 and beyond": Qualitative analysis of barriers to engagement in HIV care among individuals in rural East Africa in the context of test-and-treat

Abstract

Background: Despite substantial progress, gaps in the HIV care cascade remain large: globally, while about 36.7 million people were living with HIV in 2015, 11.9 million of these individuals did not know their HIV status, 12.7 million were in need of antiretroviral therapy (ART) and 13.0 million were not virally suppressed. We sought to deepen understanding of the barriers to care engagement at three critical steps of the care cascade proposed to make greatest impact for attaining the UNAIDS 90-90-90 targets aimed at shutting down the HIV epidemic.

Methods: Analyses were conducted among HIV-infected adults in rural East Africa. Qualitative data were collected using in-depth interviews among 63 individuals participating in an ongoing test-and treat trial (NCT01864683) in its baseline year (July 2013-June 2014). Audio recordings were transcribed, translated into English, and coded using Atlas.ti software. Data were analyzed using a thematic framework for explaining barriers to care engagement that drew upon both theory and prior empirical research in similar settings.

Results: Multiple barriers to engagement in care were observed. HIV-related stigma across dimensions of anticipated, internalized and enacted stigma manifested in denial and fears of disclosure, and influenced lapses in care engagement across multiple steps in the cascade. Poverty (lack of food and transport), lack of social support, work interference, prior negative experiences with health services, drug side effects, and treatment fatigue also negatively affected ART adherence and viral suppression. Gender differences were observed, with work interference and denial disproportionately affecting men compared to women.

Conclusion: Multiple barriers to HIV care engagement still pervade rural sub-Saharan settings threatening the realization of the UNAIDS 90-90-90 targets. To control the epidemic, efforts need to be accelerated to combat stigma. Patient economic empowerment, innovative drug formulations, as well as more patient-responsive health systems, may help overcome barriers to engagement in care.

Trial registration: ClinicalTrials.gov NCT01864683 NCT01864603.

Conflict of interest statement

DVH reports grants from National Institutes of Health, non-financial support from Gilead Sciences, during the conduct of the study; grants from National Institutes of Health, grants from Gates Foundation, outside the submitted work. EDC reports grants from National Institutes of Health, during the conduct of the study. We would like to confirm that this does not alter our adherence to PLOS ONE’s policies on sharing data and materials.

Figures

Fig 1. Barriers to care engagement among PLWH organized from distal-to-proximate domains of influence using social-ecological framework.

Note: Figure 1 applies emergent findings to distal-to-proximate domains of influence, implied by social-ecological systems theory (Bronfenbrenner, 1979).