(Withdrawn) Perceptions of Healthcare Accessibility and Medical Mistrust Among African American Women Living with HIV in the United States

Background and Purpose: African-American women living with HIV/AIDS frequently endure structural oppression, racial biases, and discrimination in the healthcare system. Research on African-American women living with HIV/AIDS continues to be understudied, and even less is known about the accessibility of HIV/AIDS treatment among low income African-American women in urban settings. This study focused on elucidating the intersection of HIV/AIDS, mental health, and treatment adherence, while simultaneously exploring the specific issues facing African-American women. The following research questions were addressed: (1) What stories are embedded in the lived experiences of seropositive African-American women in urban settings? (2) How do these women perceive their relationships with healthcare providers? and (3) What do these narratives reveal about the accessibility of community based medical and mental health services?

Methods: This study blends narrative and phenomenology approaches to capture everyday experiences and better understand the phenomenon of healthcare accessibility. The present findings are a mixed methods study examining Black women living with HIV/AIDS in urban Los Angeles County. Nonprobability (purposive) sampling was used to recruit seropositive African-American women (N = 20) from community-based agencies and HIV clinics. Four focus groups ranging from 4-8 women were held from June through October 2019. All focus group participants identified as African-American, cisgender women, and were between the ages of 28 to 75 years (M = 51.42, SD = 15.98). Participants were asked about their experiences with healthcare providers including (a) their relationship with healthcare providers; (b) accessibility of community-based medical and mental health services; and (c) experiences while attending HIV-treatment appointments. Interviews were transcribed and uploaded to Dedoose analytic software and coded using analytic induction techniques.

Results: The following themes emerged: (1) multilevel stigma and discrimination; (2) medical mistrust of providers across multiple settings; (3) mixed responses to stigma, discrimination, and medical mistrust; and (4) preferences for patient-provider relationship. Participants described how medical providers, nurses, and other healthcare staff perpetuated negative treatment, including multiple forms of discrimination and stigmatization based on their intersectional identities involving their race, class, gender, and HIV/AIDS diagnosis. The stigma, discrimination, and resulting mistrust that they experienced often resulted in hurt feelings and decisions to disengage from treatment or remain while feeling unwelcome. Participants described their desire to feel seen, supported, and validated by healthcare providers.

Conclusions and Implications: African-American women living with HIV/AIDS face a myriad of challenges when navigating the healthcare system. These women are impacted by their interactions with both providers and ancillary medical staff. Ongoing negative interactions develop into perceptions that women are intentionally receiving subpar care based on their intersectional identities. Further, the medical mistrust is not solely directed at primary physicians, but also extends toward ancillary staff when women feel discriminated against or minimized. This mistrust can interrupt HIV/AIDS treatment adherence as women change providers or stop taking prescribed medications. When serving Black women living with HIV/AIDS, providers and staff across multiple disciplines should consider how their encounters may contribute to the medical mistrust of the healthcare system for these women.