Stopping, starting, and sustaining HIV antiretroviral therapy: a mixed-methods exploration among African American/Black and Latino long-term survivors of HIV in an urban context

Abstract

Background Although periods of HIV antiretroviral therapy (ART) discontinuation have deleterious health effects, ART is not always sustained. Yet, little is known about factors that contribute to such ART non-persistence among long-term HIV survivors. The present study applied a convergent parallel mixed-methods design to explore the phenomena of stopping/starting and sustaining ART, focusing on low-socioeconomic status African American or Black and Latino persons living with HIV (PLWH) who face the greatest challenges. Methods Participants (N = 512) had poor engagement in HIV care and detectable HIV viral load. All received structured assessments and N = 48 were randomly selected for in-depth interviews. Quantitative analysis using negative binomial regression uncovered associations among multi-level factors and the number of times ART was stopped/started and the longest duration of sustained ART. Qualitative data were analyzed using a directed content analysis approach and results were integrated. Results Participants were diagnosed 18.2 years ago on average (SD = 8.6), started ART a median five times (Q1 = 3, Q3 = 10), and the median longest duration of sustained ART was 18 months (Q1 = 6, Q3 = 36). Factors associated with higher rates of stops/starts were male sex, transgender identity, cannabis use at moderate-to-high-risk levels, and ART- and care-related stigma. Factors associated with lower rates of stops/starts were older age, more years since diagnosis, motivation for care, and lifetime injection drug use (IDU). Factors associated with longer durations of sustained ART were Latino/Hispanic ethnicity, motivation for ART and care, and recent IDU. Factors associated with a shorter duration were African American/Black race, alcohol use at moderate-to-high-risk levels, and social support. Qualitative results uncovered a convergence of intersecting risk factors for stopping/starting ART and challenges inherent in managing HIV over decades in the context of poverty. These included unstable housing, which contributed to social isolation, mental health distress, and substance use concerns, the latter prompting selling (“diverting”) ART. Primarily complementary quantitative and qualitative findings described mechanisms by which risk/protective factors operated and ways PLWH successfully restart and/or sustain ART. Conclusions The field focuses substantially on ART adherence, but greater attention to reducing the frequency of ART non-persistence is needed, along with creating social/structural conditions favorable for sustained ART.

Advancing behavioral interventions for African American/Black and Latino persons living with HIV using a new conceptual model that integrates critical race theory, harm reduction, and self-determination theory: a qualitative exploratory study

“…Indeed, they have serious barriers to engagement along the continuum, and these challenges are also relevant for (and complicate) behavioral intervention delivery. Moreover, improvements in HIV medication regimens have created a large population of long-term HIV survivors, including AABL-PLWH, and for these individuals, their HIV management has periods of stability and times of disruption [ 9 , 13 – 15 ]. Effective behavioral interventions must be tailored to the population of interest, and clearly interventions are needed designed specifically for those with the greatest barriers to engagement along the care continuum, including AABL-PLWH long-term survivors who are often absent from HIV care and not taking HIV medications.…”

“…Similarly, complete abstinence from substance use has historically been the predominant goal in most treatment settings [ 26 ]. There is clearly substantial variability in PLWH’s approaches to HIV management, yet clinical settings may not provide opportunities to discuss and explore those personal decisions to maximize health and wellbeing [ 9 , 13 – 15 ].…”

Advancing behavioral interventions for African American/Black and Latino persons living with HIV by integrating critical race theory, harm reduction, and self-determination theory: A qualitative exploratory study

“…Counter-narratives about the causes and treatments of HIV (called conspiracy theories in some cases) are another aspect of distrust [24,25]. Other barriers include substance use and mental health concerns [26][27][28][29]. Motivation to take HIV medication varies over time, but even when AABL-PLWH are ready to initiate HIV medication with high levels of adherence, motivation alone is commonly insu cient to overcome these multi-level barriers [30].…”

“…Motivation to take HIV medication varies over time, but even when AABL-PLWH are ready to initiate HIV medication with high levels of adherence, motivation alone is commonly insu cient to overcome these multi-level barriers [30]. Yet despite these impediments, AABL-PLWH certainly do evidence substantial periods where they overcome obstacles and engage along the HIV care continuum [27]. Yet, taken together, these barriers clearly serve as serious impediments to HIV management in this population.…”

“…During the planning phases of the optimization trial, our research team formed an intervention working group and carried out an iterative intervention mapping process that included a review of the literature on barriers to the HIV care continuum for AABL-PLWH as presented above, including our own past studies [14,25,27,31], and existing theories and models [35,53]. We identi ed gaps in theory, models, and interventions for this population.…”