Understanding long-term HIV survivorship among African American/Black and Latinx persons living with HIV in the United States: A qualitative exploration through the lens of symbolic violence

Abstract Background Persons living with HIV (PLWH) are living longer, although racial/ethnic and socioeconomic status (SES) disparities persist. Yet, little is known about successful HIV management over decades. To address this gap, the present study took a qualitative approach and used the lens of symbolic violence, a type of internalized, non-physical violence manifested in the power differential between social groups. We focused on adult African American/Black and Hispanic/Latinx (AABHL) PLWH from low SES-backgrounds. Methods Data were drawn from two studies with AABHL PLWH in New York City ( N =59). After providing signed informed consent, participants engaged in in-depth semi-structured interviews on aspects of HIV management. Interviews were audio-recorded and professionally transcribed verbatim, and data were analyzed using a systematic content analysis approach. Results Participants in the two studies were comparable on sociodemographic and HIV history characteristics. They had lived with HIV for 20 years, on average (range 3-33 years). All were from low-SES backgrounds and most were African American/Black and men. Participants experienced a convergence of multiple intersecting social exclusions, harms, and stigmas, consistent with symbolic violence, which contributed to disengagement from HIV care and medications. We found five specific sub-themes: (1) material, social, and emotional challenges combined to “grind down” participants over time and diminish self-worth and even, at times, the will to live, (2) social isolation and self-isolation, based in part on feeling devalued and dehumanized, served as both a stigma-avoidance strategy and a mechanism of social exclusion, (3) stigmatizing aspects of patient-provider interactions, both experienced and anticipated, and (4) perceived restricted autonomy in HIV care reduced engagement, and (5) poor HIV management was internalized as a personal failure. Importantly, resilience was also evident throughout the five sub-themes. Conclusions Symbolic violence is a useful framework for understanding the experiences of long-term HIV management/survivorship among AABHL PLWH from low-SES backgrounds. Aspects of symbolic violence are internalized over time (e.g., experiencing devaluation, dehumanization, loss of self-worth, and anticipated stigma), thereby impeding successful HIV management, including because avoiding HIV care and discontinuing HIV medications are primary coping strategies. Study findings have implications for interventions in community and health care settings.