Critical race theory as a tool for understanding poor engagement along the HIV care continuum among African American/Black and Hispanic persons living with HIV in the United States: a qualitative exploration

Abstract

BackgroundAfrican American/Black and Hispanic persons living with HIV (AABH-PLWH) in the U.S. evidence insufficient engagement in HIV care and low uptake of HIV antiretroviral therapy, leading to suboptimal clinical outcomes. The present qualitative study used critical race theory, and incorporated intersectionality theory, to understand AABH-PLWH’s perspectives on the mechanisms by which structural racism; that is, the macro-level systems that reinforce inequities among racial/ethnic groups, influence health decisions and behaviors.MethodsParticipants were adult AABH-PLWH in New York City who were not taking antiretroviral therapy nor well engaged in HIV care (N = 37). Participants were purposively sampled for maximum variation from a larger study, and engaged in semi-structured in-depth interviews that were audio-recorded and professionally transcribed verbatim. Data were analyzed using a systematic content analysis approach.ResultsWe found AABH-PLWH experienced HIV care and medication decisions through a historical and cultural lens incorporating knowledge of past and present structural racism. This contextual knowledge included awareness of past maltreatment of people of color in medical research. Further, these understandings were linked to the history of HIV antiretroviral therapy itself, including awareness of the first HIV antiretroviral regimen; namely, AZT (zidovudine) mono-therapy, which was initially prescribed in unacceptably high doses, causing serious side effects, but with only modest efficacy. In this historical/cultural context, aspects of structural racism negatively influenced health care decisions and behavior in four main ways: 1) via the extent to which healthcare settings were experienced as overly institutionalized and, therefore, dehumanizing; 2) distrust of medical institutions and healthcare providers, which led AABH-PLWH to feel pressured to take HIV antiretroviral therapy when it was offered; 3) perceptions that patients are excluded from the health decision-making process; and 4) an over-emphasis on antiretroviral therapy compared to other non-HIV related priorities. We found that although participants were located at the intersection of multiple social categories (e.g., gender, social class, AABH race/ethnicity), race/ethnicity and social class were described as primary factors.ConclusionsCritical race theory proved useful in uncovering how macro-level structural racism affects individual-level health decisions and behaviors. HIV clinical settings can counter-balance the effects of structural racism by building “structural competency,” and interventions fostering core self-determination needs including autonomy may prove culturally appropriate and beneficial for AABH-PLWH.

Health Behavior Theory to Enhance eHealth Intervention Research in HIV: Rationale and Review

“…The lack of attention to the relationship context, especially for women who are often disempowered in their intimate partnerships with men, prompted the development of the Theory of Gender and Power [42]. Finally, some critics have cited the theories’ limited relevance for ethnic/racial minorities and called for greater use of Critical Race Theory [43–45]. …”

Depression Treatment Status of Economically Disadvantaged African American Older Adults

“…As suggested by Critical Race Theory (CRT), this finding is linked to the systemic structural underpinning of mental health treatment barriers to depression among AA populations [45,46]. On an institutional level, treatment disparities for older AAs are linked to structural racism and discrimination, cultural mistrust, provider stereotypes and bias [62].…”

“…AA's health risk behaviors may be indirect effects of structural factors, as posited by CRT. Treatment for depression provided by health care providers should involve consideration of sociocultural values and preferences, in addition to addressing the manifestations of structural racism rooted within specific health care settings [23,46,69].…”

Immediate Antiretroviral Therapy: The Need for a Health Equity Approach

“…Arguably, they may well be an even more vulnerable, and more hidden, population than the newly diagnosed—without highly visible, tailored programs for them. A recent qualitative study by Freeman et al showed that Black and Latino patients living with HIV who were out of care viewed HIV care decisions through the lens of institutional discrimination, which led to feeling pressured to take ART, excluded from shared-decision making, and ignored in terms of other life concerns [ 47 ]. Incorporating a health equity perspective focused on eliminating disparities into the iART intervention must include the perspectives of patients who continually fall out of HIV care.…”