Perceptions of healthcare accessibility and medical mistrust among Black women living with HIV in the USA

Abstract

Black women living with HIV in the USA frequently endure structural racism, racial biases and discrimination in healthcare that affect their access to care. To explore their experiences in healthcare settings as they relate to HIV-treatment accessibility and medical mistrust we used intersectionality and structural intersectionality as guiding frameworks. Four focus groups were conducted with 20 low-income Black women living with HIV in a large urban region. Using thematic analysis, we identified four themes: (1) multilevel stigma and discrimination; (2) medical mistrust of providers across multiple settings; (3) varying responses to stigma, discrimination, and medical mistrust; and (4) preferences for patient-provider relationships. Participants described how medical providers, nurses and other healthcare staff perpetuated negative treatment, including multiple forms of discrimination and stigmatisation based on their HIV diagnosis, race, class and gender. The stigma, discrimination and resulting mistrust experienced often caused hurt feelings and decisions to disengage from treatment or remain with providers while feeling unwelcome. Participants described the strong desire to feel seen, supported and validated by healthcare providers. Narratives reveal that feelings of being discriminated against can cultivate mistrust not only towards doctors, but other provider types and settings. Findings can inform care models for low-income Black women living with HIV.

Introduction

African Americans in the USA continue to be disproportionately impacted by HIV, making up the largest proportion of individuals newly diagnosed with HIV in 2020, and experience a rate of new HIV diagnoses 8.1 times that of White persons (CDC [Centers for Disease Control and Prevention] 2022a). African Americans now make up nearly 40% of the estimated one million people living with HIV in the USA (CDC 2022a). Black women and girls are especially burdened by HIV compared to women of other racial/ethnic groups—comprising the largest proportions of diagnoses between 2015 and 2020 (CDC 2022a). Moreover, Black women accounted for 13% of the female population in 2020, yet comprise about 55% of HIV diagnoses in the same year (CDC [Centers for Disease Control and Prevention 2022b). Although about 90% of Black women living with HIV in the USA were diagnosed, African Americans still show the lowest rates of receipt and retention in HIV care in 2020 (CDC 2022b). Black women living with HIV experience multilevel stigma and discrimination that impact their perceptions of HIV-related healthcare settings, healthcare providers, and treatment (Fletcher et al. 2016; Randolph et al. 2020; Stringer et al. 2016).

HIV-related stigma pervades a multitude of settings and contexts (Fletcher et al. 2016; Geter, Sutton, and Hubbard McCree 2018; Ho and Holloway 2016; Stringer et al. 2016; Walcott et al. 2016) and is associated with perceptions of lower quality health and medical care (Lichtenstein 2003; Logie et al. 2011) and lower likelihood of treatment seeking (Ho and Holloway 2016; Walcott et al. 2016). Additionally, such stigma negatively affects engagement and retention in health services (Chesney and Smith 1999; Mahajan et al. 2008).

Black women living with HIV in low-income communities frequently endure structural racism, racial biases and discrimination in healthcare systems, that act as independent and intersecting barriers to treatment uptake (Randolph et al. 2020; Walcott et al. 2016). Medical mistrust, which can be defined as distrust of the healthcare providers, treatment and healthcare systems (LaVeist, Nickerson, and Bowie 2000), is especially high among African Americans living with HIV (Bogart et al. 2019; Dale et al. 2016). Their mistrust is linked to direct experiences of racism and discrimination in healthcare settings and knowledge of historical mistreatment in research, such as the Tuskegee Syphilis Study (Gamble 1997). Medical mistrust and racism-related mistrust (e.g. beliefs that race impacts negative provider treatment) have been shown to predict lower medication adherence (Dale et al. 2016). Although the provider-patient relationship, patient education and counselling are perceived as mechanisms to enhance medication adherence among Black women living with HIV (Okoro and Odedina 2016), less is known about the specific experiences of Black women accessing HIV-treatment and how they perceive their relationship to various healthcare providers. Significant research gaps remain regarding the roots of their mistrust and its effect on their treatment engagement.

Present study

Research on Black women living with HIV continues to be under-developed, and little is known about the accessibility of HIV treatment to low-income Black women in urban settings (Geter, Sutton, and Hubbard McCree 2018). Members of this population continues to receive services and treatment that are not tailored for their intersectional identities or account for their perceptions of healthcare providers, which may ultimately lead to disengagement and disruptions in continuity of care. This study used intersectionality and structural intersectionality theory as guiding frameworks with which to explore how low-income Black women living with HIV perceive their relationship with healthcare providers and access to HIV treatment. The study aimed to explore how they navigate HIV related services and focused on the following: (a) their relationship with healthcare providers; (b) the perceived accessibility of community-based medical services; and (c) processes involved in attending HIV-treatment appointments. Findings could help develop an evidence-informed care model for low-income Black women living with HIV.

Materials and methods

Data for this paper come from a project entitled Black Women’s Health, which examined how Black women living with HIV navigate the healthcare system in urban Los Angeles. Study procedures were approved by the University of California, Los Angeles Institutional Review Board.

Theoretical framework

Intersectionality as a theoretical framework posits that the interconnectedness and fluidity of social identities, including race, gender, medical diagnosis, and socioeconomic status, shape social positioning and social experience (Crenshaw 2013). Black women living with HIV hold multiple marginalised statuses that compound the nature and intensity of microaggressions, discrimination and stigma that are rooted in the intersection of their identities. Structural intersectionality looks specifically at the large-scale, system-wide and interacting effects of structural racism, classism and other systems of oppression (Homan, Brown, and King 2021). This perspective encourages scholars to examine the need for change at the institutional level, such as healthcare institutions, rather than focusing only on individual patient behaviours. An intersectional and structural intersectional lens was therefore used to understand the experiences of Black women living with HIV while accessing care.

Research design

This study blends narrative and phenomenological approaches to capture the multifaceted nature of women’s construction of meaning from everyday experiences related to HIV-treatment to better understand the phenomenon of healthcare accessibility for Black women (Jablonski 1994; Patterson 2018). Narrative inquiry underscores the utility and power of individuals’ lived experiences told through stories situated by time and context (Padgett 2017). Phenomenology posits that reality is constructed by consciousness, experiences are intentional, and phenomena can best be understood by exploring lived experience (Padgett 2017). By using narratives and stories as data, researchers can make meaning of human experiences not well researched or understood. Thus, by mixing these approaches we sought to explore the complexity of individual experience an illuminate commonalities and phenomenological differences in the universality of their experiences (Patterson 2018).

Recruitment and sample

Nonprobability (purposive) sampling was used to recruit Black women living with HIV from community-based agencies and HIV clinics. Participants were reached through flyers distributed at women-focused events in LGBTQ centres and local community HIV clinics. Recruitment also occurred at partner agencies where women were referred to the study by staff members. Inclusion criteria were as follows: (1) identified as a Black woman; (2) aged 18 or over; (3) English speaking; (4) prescribed and currently taking ART; and (5) having the capacity to provide consent. In total, 20 women participated in four focus groups, ranging from 4–8 women per group, between June and October 2019. Of the (12) participants who completed a demographic survey, all identified as Black, cisgender women, and were between the ages of 28 and 75 years (M = 54.00 SD = 15.60).

Procedures

Prior to data collection, researchers verbally reviewed the study consent process and each participant provided written informed consent. Participants were asked to complete a brief demographic survey prior to their focus group, however, some women expressed discomfort providing demographic information. Therefore, demographic data were collected from only 12 of the focus group participants.

Semi-structured focus groups were then conducted with participants at two community centres in Los Angeles. Focus groups were conducted in English by trained facilitators who identified as Black women. Participants were asked about their experiences with healthcare providers including prompts such as, “What do you like about your healthcare provider?” and “What do you wish your healthcare provider would say to you during your visit?” The focus group questions were intentionally broad, as the open-ended structure enabled participants to answer the questions and tell stories in their own words (Allen 2017; Rubin and Rubin 2012).

Focus groups lasted approximately 60 to 90 minutes and participants were offered a meal and $60 cash as a token of appreciation for their time. Focus groups were professionally transcribed and uploaded to Dedoose analytic software for analysis and review by the research team.

Data analysis

Thematic analysis (Braun and Clarke 2012) was used to generate codes, then identify patterns and organise themes across narratives. Using analytic induction techniques, a data driven approach in which meaning making occurs naturally from the data, transcripts were read at least twice by two coders then open coding was conducted in Dedoose (version 8.3.44) to identify relevant codes and categories of information. Analytical coding was used to refine the list of codes and combine open codes; codes were constantly compared for similarities and differences (Merriam and Tisdell 2015). A codebook was developed in an iterative and cyclical manner, disagreements were resolved through discussion in team meetings.

To help make meaning of the data, we consolidated representative quotes and brief descriptions of the codes into a document (Padgett 2017). Several team meetings were held to interpret data and identify themes (Braun and Clarke 2012), then assigned codes were categorised by representative themes (Merriam and Tisdell 2015). Intersectionality (Crenshaw 1991, 2013) and structural intersectionality theory (Homan, Brown, and King 2021) were guiding frameworks that helped contextualise participants’ social identities and histories of structural oppression.

Researchers engaged in member checking and negative case analysis to further ensure credibility and trustworthiness of findings. Thus, preliminary outcomes were presented to participants for comment and/or further investigation. Negative case analysis included frequently reviewing data to ensure we were critically self-reflective, seeking alterative explanations, and including unique cases that might be anomalies or disprove preliminary findings (Padgett 2017).

Positionality statement

This study was conducted by a team of five women of colour. Recruitment was conducted by Black women (GM, RA, and SJ) due to the sensitivity of the research topic. The recruitment team consisted of a community stakeholder (RA), an activist (GM), and a social work advocate (SJ). Focus groups were also conducted by Black women, including the study PI (LS), GM, and SJ. LS and SJ had previous experience in qualitative research. GM and RA were trained over several sessions. Excluding GM, all were social work scholars with previous experience in qualitative research.

Results

The women interviewed shared narratives that highlighted the multidimensional factors that affected their access to and engagement in HIV-related health services. Their perceptions of accessibility were not limited to their relationship with primary care doctors, as many women discussed interactions with health, administrative, and pharmaceutical staff. We identified four interrelated themes, and accompanying subthemes, that described women’s experience as follows: (1) multilevel stigma and discrimination; (2) medical mistrust of providers across multiple settings; (3) varying responses to stigma, discrimination and medical mistrust; and (4) preferences for patient-provider relationships. These themes were consistent across participants and described their positionality and intersectional identities. Descriptions of key thematic elements are provided below and supplemented by verbatim quotes from focus group participants. To ensure participant confidentiality, pseudonyms are not used, rather participants’ responses are presented as composite narratives.

Multilevel stigma and discrimination

Women shared experiences in which health providers and staff acted in a discriminatory and stigmatising way. Participants perceived that the combination of their HIV diagnosis, race, class and gender resulted in stigma, prejudice and discrimination. One participant shared:

Okay, my primary doctor is wonderful and the referral doctors seem to be a little prejudiced toward me because I’m Black … I don’t think they treat me well. I’ve been in some encounters where I heard them whispering behind my back saying, ‘Oh, look at this person. She has AIDS and she’s here ….’

The same participant continued by sharing that the intersection of her race and the stigma associated with HIV influenced a doctor and nurse to perceive her negatively.

I’m referred to them, they’re reviewing my chart and it made me seem like I’m a—I’m just gonna say—a drug addict whore. And I’m like, I’m not a drug addict and I’m not a whore. … it seems like somehow they read into that … So, I don’t like to be discriminated against when I see these doctors, because I’m Black. And they might send me to [affluent areas] or wherever they are, but they treat me different; so, I don’t like that.

Another woman also explicitly expressed feeling unwanted due to her race and class.

They give me a hard time. They even talked about, ‘Well, I don’t want her because she’s poor. She’s Black and she’s poor and we don’t want those kind of people in our facility.

One woman shared that her doctor did not answer her enquiry about the prescribed medication, which she perceived was a form of prejudice because of her identity.

Participant: I asked the doctor in the hospital what type of antibiotic, because it took my taste buds away. And he said, ‘Oh just—’ pat me on—don’t pat me on the back. Tell me what type of antibiotic and the side effects, because I don’t eat anything, and I don’t like it. He said, ‘It will wear off.’ … I asked him ‘was he prejudiced?’, because the way he acts, that’s what he is. And I don’t want to—

Facilitator: You think he might be prejudiced as far as … ?

Participant: Black people or a woman.

In sum, women perceived that healthcare providers provided suboptimal treatment which they saw as connected to the intersectionality between their social identities and their medical diagnosis.

Medical mistrust of providers across multiple settings

Participants shared negative experiences across provider types that influenced their mistrust of the healthcare system and medical professionals. While some women described positive relationships with some doctors, they often had negative experiences with nurses or other staff that led to contentious relationships, beliefs that they were not receiving the best care available, and medical mistrust. For instance, one woman described the nurses in her doctor’s office as, “ … nurses from hell and demons.” Another elaborated, “The staff at the clinic is, they’re not compassionate, they’re not caring.” Although many women shared stories of disliking and distrusting medical ancillary staff, there were a few women who liked the clinic staff. One stated:

I don’t have a problem with nowhere I go. So, wherever I go, I haven’t had any problems … So I don’t have any complaints.

We identified two interrelated subthemes that influenced their medical mistrust: (a) delays in access to care; and (b) lack of clear communication.

Delays in access to care

The negative treatment experienced by women was often linked to the belief that healthcare providers intentionally interfered with their access to medication and treatment. It was perceived that some providers in different healthcare settings intentionally perpetuated long wait times to delay their access to care. A woman explained that it took her doctor’s office three months to get her a walking aid, and she believed the delay was intentionally caused by a nurse. She stated, “I had to keep asking for it, asking for it, asking for it. And I think it was one of the little nurses don’t like me and she likes to throw a ratchet in my works.”

Another woman pointed to mistrust due to the problematic behaviours from a staff member responsible for scheduling appointments. She stated:

Because his attitude—he likes to put me on hold. My appointments, he try to put ‘em way back …. They mess with my appointments, or they leave me sitting out there a long time. Oh, and about the medicine—and then, ‘he didn’t do it. I don’t have authorisation. Stop calling here—’ So, two days later, ‘Uh, your medicine. We got your [medication].’

Similarly, other women shared experiences of both delayed treatment and negative behaviours which influenced their mistrust of nurses in health facilities.

Participant 1: And for the nurses—Dr [ … ], you be in there with him discussing, he tell you what you’re gonna get. But then you don’t get it because the nurse decide that she’s the doctor and she don’t send it. And then you call because, you know, the doctor told you to do it and then you call her, ‘Oh, he didn’t do it.’ Why would he say he did—

Participant 2: And you just talked to him.

Participant 1: Why two, three days go on, and one time she told me, ‘You keep calling up here. You get on my nerves.’

If the system is overburdened and patients experience barriers such as delays in treatment, then mistrust increases.

Lack of clear communication

Women shared several instances of miscommunication that influenced their medical mistrust. For instance, participants explained mistrust of their doctors if they perceived the doctors were not providing the most updated or optimal medications. When participants believed that their doctor was not being honest, this led to the belief that doctors prescribed medication based on financial gain.

I just wish that the doctors … that they would be truthful and honest … Because nobody today have to take 10 and 20 pills anymore. … and I did a little research to find out that some of those doctors was getting kickbacks, you know, medicine that was there from the beginning, they still giving them to people.

Others were concerned if their doctors did not clearly communicate side effects of their medications. One participant stated:

I do wish my doctors … would have told me about the side effects of the medication … none of my doctors never told me anything about the medications having effects on your kidneys or your bone density … if they know these medications have effects on your kidneys and stuff that they’ve never ordered [a kidney test] before. I never knew why I was having kidney problems until now. So, I do wish they would talk about the side effects of treatment and stuff more.

Another woman described miscommunication between the doctor’s office and the pharmacy which resulted in her being denied her regularly prescribed medication. This interaction led her to mistrust the nurse and pharmacy staff. She felt “They doing something under the table … The nurse could be doing [something] with the pharmacy. Maybe giving her pills for her to do something.”

In sum, the women described medical mistrust due to delays in access to care and lack of clear communication. This increased their mistrust and impacted their perceptions of doctors and other healthcare staff.

Varying responses to stigma, discrimination and medical mistrust

The stigma and discrimination, and resulting mistrust that women experienced influenced their feelings and behaviour. We identified three interrelated subthemes to capture their responses to negative provider treatment and medical mistrust: (a) feeling disliked, hurt and offended; (b) medical mistrust and disengagement in care; and (c) continuing with care while feeling unwelcome.

Feeling disliked, hurt and offended

Some women shared the belief they were disliked by their providers which resulted in feeling hurt and offended. For example, one woman stated, “I know they don’t like me.” Enduring differential treatment and discrimination when accessing care resulted in often emotional responses. A woman explained:

I don’t think they treat me well. … I heard them whispering behind my back saying, “Oh, look at this person. She has AIDS and she’s here,” … and it hurt my feelings. … just because I’m from [intentionally omitted], that don’t give you the right to talk about me behind my back …. And it seemed like I didn’t get the proper care that I needed …

Medical mistrust and disengagement in care

One participant was explicit that doctors’ discrimination and dismissal of her concerns reminded her of historic instances of racism and oppression perpetrated by the healthcare and scientific community. She discussed experiencing a negative side effect of a prescribed medication, specifically losing sensation in her body, and felt upset that her doctor had not warned her of these potential side effects.

It took me back to Tuskegee and the way they did those guys … I don’t know if I can trust these people … that kind of made me put everybody under the magnifying glass …. And me and my doctor kind of bump heads with that even now. Because I saw something on TV about [intentionally omitted medication] and about it messing with you medically. I stopped taking it. I stopped taking my meds. I quit. I didn’t call her. I didn’t say nothing.

Another woman shared, “And I know they done our community bad once before, way, way back when. I read about that. I didn’t have to be there when it happened, but I feel for ‘em.”

Continuing with care while feeling unwelcome

In contrast, other women felt compelled to stay engaged in treatment if they believed they would receive the highest quality medical care, even if this meant feeling disliked and unwelcome. One woman described how she felt discriminated against because of her race and class, but expressed being thankful she was able to be treated at a particular medical facility.

I just thank God that God is here and he [is in] control, that he allowed me to go into that office and someone with a kind heart will say, ‘Okay, I’ll take her.’ Even though it wasn’t the person that I wanted, they still let me in the door. And I feel discriminated against because of that, and it made me feel bad because she actually told me that to my face, you know?

Another woman described discrimination she faced while attempting to access services at a facility in an affluent area which required that she advocate for herself to be seen by the health providers. She shared:

And it wasn’t no other Black people there, but I’m in the door and I got seen. And I’m really pissed off about it and I’m gonna stay there. I’m not leaving until I get the service I got rendered … And that goes for all of LA that’s not South Central. All of these other areas, that, you know—Culver City, Beverly Hills, Westwood, West Hollywood, all these people don’t want me there but I’m getting in the door. And they give me a hard time, months to get in.

In summary, women responded to the stigma and discrimination they experienced in a variety of different ways. They felt hurt, disengaged in care, or continued with care despite feeling unwelcome.

Preferences for patient-provider relationships

Within this fourth set of narratives, there was discussion about what women wanted from their patient-provider relationship. Participants expressed the desire to feel supported by health providers and ancillary staff, have more time with doctors, and have providers who are upfront and honest with them. One woman elaborated:

Well, I just want my doctor to have my back, you know? I just want them to reassure me that they’ve got my back. … and we could sit down and say, ‘You know what? You can call me any time. If you’re having an issue here’s my phone number, I got your back ….” All I want to know that they got me.

Women also expressed wanting to feel their doctors made time for them and made an effort to listen to their concerns. In particular, they wanted to be provided with sufficient time to address issues without feeling rushed or dismissed. One woman explained how she did not have sufficient time to express herself, and worried that the doctor kept the visits short because of her poor prognosis:

Because he would come in and it was the quickest visit. You … don’t get to talk to him, you don’t get to express yourself. He just like, ‘You’ll be lucky if you come back for the next visit’ ….’You so fucked up,’ basically.

Other women wanted a higher level of care and respect from all of the healthcare personnel with whom they interacted. Women needed to make a diligent effort to attend their appointments, including managing chronic pain and public transport, only to feel dismissed or patronised by the medical staff. One participant described the ordeal of travelling a great distance to get to her appointment even though she was in pain, only to be told her visit had been cancelled:

I got so stiff and looking around and I wanted to say something so bad, but something said, ‘No, don’t say nothin’; just take it and go on’. They just re-scheduled me and I had to go back and go through all that stuff all over again. And guess what? I didn’t even get [another appointment] until the next month.

Another woman described her experiences as follows.

When you walk in, they act like they don’t know you at the front desk. I walk in and the lady, same woman who’s been at the front desk for about ten, over ten years. And she’s like, “Who are you? Who are you here to see?” I come in here so much, I would think you at least remember my name or remember my face, but she doesn’t.

These stories underscore the importance for a more compassionate and respectful level of care while accessing treatment. One woman provided a poignant example of feeling dismissed by a social worker after walking about a mile from the bus stop:

And I get to the clinic and I see the social worker. And I described to her like my knees hurt, my chest is burning ‘cause I just had—it’s like an incline to get from the bus stop to the clinic. Like I just had to do this walk and it was really hard on my body. And she was like, ‘Oh, well, it sounds like you got some great exercise.’ I was shooting daggers out of my eyes at that woman. Like don’t even say nothing else to me. You’re supposed to be here to help me. I would expect you to offer me a cup of water, something. ‘Oh, have a seat. Oh, I’m sorry you had to go through that.’ Something. Like act like you care.

Taken together, these stories and experiences reveal the type of care that women hoped to receive from their care providers. Many described the desire to feel listened to and validated by health professionals who cared about them as people and respected their time. They wanted to spend time with their doctors without feeling rushed.

Discussion

This study explored the lived experiences of Black women living with HIV in a large urban region and their feelings regarding medical mistrust when accessing HIV-related services. Though sparse, previous work with Black women living with HIV has reported a lack of good quality care and stigma as barriers to treatment engagement and subsequent viral suppression (Fletcher et al. 2016; Walcott et al. 2016). We built on prior research by exploring the causes of medical mistrust and its resulting effect on the experiences and perceptions of Black women living with HIV. By using a structural intersectionality framework and a phenomenological approach to examine the complexities and nuances of medical mistrust within this specific population, our paper provides a meaningful contribution to the literature.

This work adds to existing literature on intersectional health disparities that explores the marginalisation experienced by Black women in healthcare systems (Bowleg 2012; Lewis et al. 2017; Palmer, Cozier, and Rosenberg 2022). Participants in the study described how the intersection between different aspects of their identity directly affected health provider treatment, the services offered, and ultimately led to medical mistrust. Although prior studies document the history of medical abuse on Black bodies as a root cause of mistrust (Dale et al. 2016), this study identifies lived experiences connected to Black women living with HIV’s intersectional identities as factors leading to medical mistrust.

This work builds on understandings of medical mistrust among Black women living with HIV documented in previous research. Similar to findings from LaVeis et al. (2000), medical mistrust among Black women living with HIV does not solely focus on medical doctors but extends to the wider healthcare system. Unlike research that has reported mistrust as causing an underutilisation of or delays in seeking healthcare services (Hammond 2010; Hammond et al. 2010), women in this study maintained their healthcare regimen and found multiple ways to remain engaged with their treatment (e.g. by changing health providers, continuing to attend appointments despite negative experiences, and advocating for themselves to receive needed services).

Findings from this study help develop a more nuanced understanding of HIV treatment adherence specifically for low-income Black women in urban settings. The work identifies structural (e.g. access to HIV services, communication with health providers, quality of care) and social barriers (e.g. stigma and discrimination) to adherence and how women respond. Access to appointments and medications, interactions with health providers, and clarity in communication are all structural facilitators or barriers to care. Social barriers include stigma and discrimination based on direct interactions with providers and ancillary staff. These multilevel barriers forced women in our study to find various ways to attain the services they needed. Results support previous findings that HIV stigma can stem from provider interactions and impede treatment in care. This aligns with calls to address stigma as a barrier to care (Carr and Gramling 2004; UNAIDS: The Joint United Nations Programme on HIV/AIDS 2017).

Limitations

This study is not without its limitations. Since all of the participants were in receipt of HIV-related healthcare services, they do not reflect the experiences of women who are not engaged in this kind of care. Due to the purposive sampling approach adopted and the small sample size, this study does not claim to be representative of, or generalisable to, all Black women living with HIV. Another limitation derives from the fact that there were only 4–8 women in each focus group, which is fewer than standard requirements. Finally, although group members appeared comfortable during the discussion and moderators ensured everyone had time to respond, there may have been biases due to social acceptability.

Implications for research and practice

Black women are disproportionately affected by the HIV epidemic. However, further research is needed into how they manage their treatment adherence while simultaneously coping with multilevel stigma, discrimination and medical mistrust. Unfortunately, the development of culturally sensitive, gender-relevant HIV treatment programmes to promote HIV treatment engagement among Black women has been slow. This study informs various types of providers about the impacts of their interactions with Black women living with HIV. Many providers in low-income communities (where our participants reside), face overburdened and under resourced systems. While many doctors follow medical guidelines while seeing numerous patients per day, they may still lack a human element that makes patients feel safe, comfortable and respected. This is critical given that the impact of their interactions and the services they provide can have lingering and potentially detrimental effects on the women they serve.

Future programmatic interventions might include training physicians to more effectively incorporate culturally tailored communication strategies (Arya, Behforouz, and Viswanath 2009). This is bolstered by narratives of the outliers in this study who appreciated the providers and staff who communicated clearly, took time to answer their questions, referred them to desired services, and made them feel heard. This provider training should extend to all health workers and should highlight the importance of using non-stigmatising language and including the stories and perspectives of marginalised communities, including Black women living with HIV. Furthermore, the adoption and enforcement of policies that explicitly prohibit discriminatory behaviours and the reduction of stigma among health workers is crucial.

Future research should shift the focus from individual-level barriers to large-scale healthcare institutions. Applying intersectional and structural intersectional frameworks helps elucidate the overlapping systems of oppression (e.g. racism, sexism, classism) that impact the lives of Black women living with HIV (Crenshaw 1991; Homan, Brown, and King 2021). Furthermore, a structural intersectionality approach allows us to address the need for systemic structural change at the institutional level (Homan, Brown, and King 2021), rather than place the onus on individuals. Similar to previous studies (Dale et al. 2016; Melton 2011) we advocate for the continued development of policies and practices that create a more equitable environment for Black women living with HIV.

Conclusion

Black women living with HIV face myriad challenges when navigating the USA healthcare system. Numerous factors contribute to the development of medical mistrust, including perceived stigma and discrimination. Ongoing negative interactions may develop into perceptions that women are intentionally receiving suboptimal care based on their intersectional identities. Importantly, medical mistrust is not solely directed at doctors but also extends to other healthcare professionals and can interfere with HIV treatment adherence. To better serve Black women living with HIV, health providers and staff of all kinds should consider how to improve the quality of their interactions and practices so as to ensure they do not contribute further Black women living with HIV’s longstanding mistrust of the healthcare system.