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 the experience of living with and managing HIV over decades. The present study took a qualitative approach and used the lens of symbolic violence, a type of internalized, nonphysical violence manifested in the power differential between social groups. We focused on adult African American/Black and Latinx (AABL) PLWH from low-SES backgrounds. Methods: Data were drawn from two studies with AABL 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 directed qualitative content analysis. Results: Participants in the two studies were comparable on sociodemographic and background 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 social exclusions, harms, and stigmas, consistent with symbolic violence, which contributed to disengagement from HIV care and discontinuation of HIV medications. We organized results into five sub-themes: (1) participants were "ground down" over time by material, social, and emotional challenges and this diminished self-worth and, at times, the will to live; (2) social isolation and self-isolation, based in part on feeling devalued and dehumanized, served as stigma-avoidance strategies and mechanisms of social exclusion; (3) stigmatizing aspects of patient-provider interactions, both experienced and anticipated, along with (4) restricted autonomy in HIV care and other settings (e.g., parole) reduced engagement; and (5) poor HIV management was internalized as a personal failure. Importantly, resilience was evident throughout the five sub-themes.

African American/Black and Latino Adults with Detectable HIV Viral Load Evidence Substantial Risk for Polysubstance Substance Use and Co-occurring Problems: A Latent Class Analysis

“…Yet, medication for opioid use disorders tends to be under-used among PLWH [ 17 , 87 ]. Barriers to the provision of medication for opioid use disorder are numerous and operate at the levels of policies (e.g., insufficient number of waivers for buprenorphine prescription, insurance restrictions), the health care system (e.g., lack of low-threshold services), specific institutions (e.g., syringe service programs not commonly co-located in HIV care settings), health care providers (e.g., barriers to obtaining buprenorphine prescribing waivers, bias toward persons who use substances, lack of training in harm reduction), and among PLWH (e.g., feeling dehumanized, fear, mistrust, competing priorities, substance use-related stigma) [ 9 , 84 , 88 , 89 ]. Harm reduction services are critical for persons who use substances, including those who use opioids but are sorely lacking [ 84 ].…”

“…These racial/ethnic health disparities are driven by barriers and risk factors that operate simultaneously at structural, organizational, social, and individual levels of influence [ 6 , 7 ]. For example, low SES creates complex competing priorities and tangible structural barriers to engagement along the HIV care continuum, such as unstable or low-quality housing or homelessness and difficulty accessing high-quality HIV services [ 8 , 9 ]. Social-level barriers include complex stigma and social isolation [ 9 , 10 ].…”

“…For example, low SES creates complex competing priorities and tangible structural barriers to engagement along the HIV care continuum, such as unstable or low-quality housing or homelessness and difficulty accessing high-quality HIV services [ 8 , 9 ]. Social-level barriers include complex stigma and social isolation [ 9 , 10 ]. At the individual level of influence, primary barriers include medical distrust and substance and mental health concerns [ 11 , 12 ].…”

Evidence for neuropsychological health disparities in Black Americans with HIV disease

“…Indeed, Black people with HIV (PWH) evidence longer durations from HIV diagnosis to initiation of antiretroviral therapy (ART) and virologic suppression as compared to White PWH (Haines et al, 2016). Experiences of poverty, social stigmatization, and structural racism contribute to challenges in long-term HIV management in Black PWH (Freeman et al, 2020). In particular, discrimination and suboptimal management of mental health disorders (e.g., depression, substance use disorder) are associated with worse medical treatment adherence for Black PWH (Casagrande et al, 2007;Rawlings & Masters, 2008).…”

Vulnerabilidade Programática Às Ist/Aids Na Atenção Primária À Saúde: Um Habitus Permeado Pela Violência Simbólica

“…Referente ao impacto do habitus e da violência simbólica no contexto assistencial de pessoas vivendo com HIV, cabe exemplificar este fenômeno com um estudo realizado nos Estados Unidos com a participação de afro-americanos, negros e latino-americanos que vivem com HIV. Estes participantes relatam a violência simbólica desencadeando sérias consequências adversas para a saúde física e mental, a exemplo de exclusões sociais, danos e estigmas, desligamento dos cuidados com o HIV e a suspensão dos medicamentos para o HIV (7) . À luz desse exemplo e correlacionando a sociologia bourdieusiana com as várias dimensões inerentes ao campo social da saúde e da enfermagem, afirma-se que "o habitus se explicita nas relações com cliente e família e com agentes da saúde nas ações de cuidar, na gerência da equipe e dos serviços que constituem a estrutura organizacional das instituições" (8) .…”