Conspiracy Beliefs Are Not Necessarily a Barrier to Engagement in HIV Care Among Urban, Low-Income People of Color Living with HIV

Abstract

Background: HIV-related “conspiracy beliefs” include ideas about the genocidal origin of HIV to target minority people, and the notion that a cure for HIV is being deliberately withheld. Previous literature suggests that these beliefs may negatively affect engagement in HIV care and ART adherence, but little is known about how people who are disengaged from care may think about these ideas. Methods: Twenty-seven semi-structured interviews were conducted with low-income Black and Latinx people living with HIV in NYC who were currently disengaged from, or recently re-engaged in, HIV care. Findings: The data suggest that HIV-related "conspiracy beliefs" are not necessarily a barrier to care. Regardless of whether or not people endorsed these ideas, participants were largely dismissive, and prioritized focusing on managing their HIV and overall health and life challenges. Recommendations: Interventions aiming to improve ART adherence and retention in HIV care should focus on building trust between clinicians and populations that have experienced historical, as well as ongoing, marginalization. HIV care providers should ask patients open-ended questions specifically about their beliefs about HIV and ART in order to address potential suspicion. Moving away from the phrase "conspiracy beliefs" in favor of more neutral language, such as “HIV-related beliefs,” can enable us to better understand these ideas in the context of people’s daily lives. Conclusions: Further research is needed to better understand how structural inequality may shape how people experience mistrust, and how mistrust may factor into the constellation of barriers to consistent engagement in HIV care.