A Qualitative Study of Black and Latine HIV Care Consumers’ Perceptions of Providers’ Behaviors, Medical Mistrust, and Experiences of Discrimination

Abstract

Black and Latine Americans face the highest HIV burden among U.S. racial and ethnic groups, exacerbated by intersectional stigma and medical mistrust. We conducted 21 interviews with Black and Latine HIV care consumers between November-December 2021, investigating their views on medical mistrust and experiences of stigma. Key drivers of mistrust included perceptions of providers not prioritizing patient interests, perceived dishonesty, and doubts about their competence. In addition, participants highlighted a lack of individualized care, no partnership in decision making, perceived provider incompetence, insufficient follow-up, and overall institutional mistrust. Participants felt judged based on their HIV status and observed race and ethnicity-based disparities in care outcomes. In response to mistrust, they either switched providers or self-advocated. These insights may guide the creation of interventions to tackle medical mistrust among providers.

Populations who identify as Black and Latine are highly affected by HIV-related health disparities in the U.S.^1,2 These disparities vary according to age, race, and ethnicity, as well as by sex and gender identity. They also affect HIV-related outcomes, including rates of infection, viral load suppression, and treatment within the health care system.^3-7 Adolescents and adults who are Black and Latine had seven and three times the prevalence rates of HIV in 2019 compared with their counterparts who identify as non-Hispanic White.¹ Individuals who identify as Black and Latine and belong to a sexual minority group, such as men who identify as sexual minority individuals have the highest burden of HIV among U.S. populations, as they jointly represented 50% of the total burden of new HIV infections among all U.S. populations in 2019.^1,8,9

Fewer men who are Latine, identify as sexual minority individuals, and are living with HIV report knowledge of their status, access to HIV care, and viral suppression, compared with men who identify as sexual minority individuals and are non-Hispanic White .¹⁰ There is also evidence of lower viral suppression levels among a sample of U.S. men who are non-Hispanic Black and identify as sexual minority individuals compared with men who are non-Hispanic White and identify as sexual minority individuals living with HIV. Populations who are Black show the lowest viral suppression rates among racial/ethnic groups.^6,11 Women who are Black and Latine, with HIV in the U.S. have reported dissatisfaction with aspects of HIV care coordination and continuity, differences in treatment by varying health actors resulting from their HIV statuses, lack of comprehensive health care, and feelings of lack of safety when seeking HIV-related care services.¹²

In Los Angeles County (LAC), a setting of the present research, 90% of individuals living with diagnosed HIV are men. Men who identify as non-Hispanic Black , although only 4% of the LAC population, represented 17% of people living with diagnosed HIV in LAC in 2021, signifying the highest disease burden among all racial and ethnic groups. Among women who are cis-gender in LAC, women who are non-Hispanic Black have the highest rates of new HIV diagnoses (30 per 100,000), followed by women who identify as Latine (10 per 100,000).⁶

Intersectional stigma and discrimination are key contributors to HIV-related disparities affecting populations who are Black and Latine, living with HIV.^13,14 The intersectionality framework recognizes that multiple externally stigmatized social identities (e.g., minority race and ethnicity, gender identity, sexual minority orientation) are interdependent and mutually constitutive. Therefore, these externally stigmatized social identities must be examined simultaneously along with intersectional systems of privilege and oppression creating structural-level factors (e.g., racism, sexism, heterosexism) that affect the overall lived experiences of individuals; the whole identity is more than the sum of its parts.^15-18 For example, in the U.S., HIV-related stigma and discrimination are often co-experienced with other forms of stigma and discrimination, such as those from social identities, having mental disorders, using substances, and being an immigrant (and immigration status). Discrimination is robustly associated with a wide range of poor health and health care outcomes across conditions and populations; experiencing intersectional stigma and facing discrimination due to the intersection between multiple individual- and structural-level positions and inequalities may amplify the detrimental effects of discrimination on health outcomes.^19-21

Intersectional stigma has consistently shown a negative association with health behaviors and outcomes²² in varying health contexts including mental illnesses²³ and physical disabilities.²⁴ Americans who are Black and Latine with HIV report high levels of intersectional stigma and medical mistrust. A combined experience of discrimination, intersectional stigma, and medical mistrust is associated with low health care engagement, lower satisfaction in health care utilization, poor adherence to antiretroviral therapy, and worse HIV care outcomes in people living with HIV in comparison with people who have not had these experiences.^13,25-30 Other HIV-related effects of intersectional stigma among populations who are Black and Latine include reduced HIV status disclosure, increased depressive symptoms, and lower access to HIV-related health care services.^31-35 A population-based survey showed that respondents who are Black and Latine reported higher mistrust in personal physicians as well as mistrust in the health care system (e.g., clinics, hospitals, insurance providers), than their counterparts who are non-Hispanic Whites; lower socioeconomic status was also associated with higher levels of mistrust.^36,37 Immigrants who identify as Latine may avoid HIV-related health care due to mistrust around confidentiality (that one may be deported because one’s information will not be kept from the government).³⁸

Medical mistrust refers to the lack of trust in the motivations of various actors within the healthcare system, including health institutions and providers. This mistrust stems from doubts about whether these actors are truly acting in the best interest of the patient and whether they will contribute to the most positive health outcomes.¹³ [author: I don’t know how to understand “and will not yield the most positive health outcomes.” Re-write.] Mistrust may be regarded as not merely the belief that the trusted party will work against the best interest of the trusting party, but also that the former will intentionally inflict harm on the latter. ^39,40 Medical mistrust is rooted in historical and contemporary structural and interpersonal experiences of intersectional stigma, discrimination, racism, and resultant inequity in health care and broader U.S. society. Examples of these experiences include unethical medical experimentation (of which the U.S. Public Health Service study at Tuskegee is just one example), limited access to high-quality health care, and interpersonal mistreatment.^41-43 There is a relationship between medical mistrust and the lack of trustworthiness of health care systems, players, and actors.⁴⁴

There is a dearth of evidence highlighting the perceptions by members of racial/ethnic groups that are non-Hispanic Black and Latine of provider behaviors that foster perceptions of discrimination and feelings of medical mistrust. Although some qualitative research on health care discrimination and mistrust exists,^45,46 there has been limited focus on understanding HIV care consumers’ perspectives, including their reactions and behaviors in response to provider behaviors perceived as discriminatory or untrustworthy. Quantitative methods have been used to understand medical mistrust in the contexts of HIV testing, engagement in HIV care, PrEP uptake, and treatment adherence.⁴⁷ Thus, in the current study, we used qualitative methods to explore consumers of HIV care who identify as Black and Latine’s perceptions of provider behaviors that influence trust and mistrust, their experiences of intersectional stigma and mistrust in health care, and their behaviors and actions in the context of medical mistrust.

Methods

Participants and procedure.

We conducted 21 semi-structured interviews from November to December 2022. Participants were 21 consumers of HIV care who identify as Black and Latine, constituting five interviews per demographic group (i.e., Black vs. Latine; man vs. woman). Evidence suggests that studies with a narrowly defined goal and relatively homogeneous populations reach saturation at 9-17 participants.⁴⁸ In the current study, interviews were conducted until saturation was reached in data collection. Table 1 presents the sociodemographic characteristics of the sample. All participants were recruited in the Greater Los Angeles area and San Francisco Bay Area through University of California, Los Angeles (UCLA) Center for HIV Identification, Prevention, and Treatment Services (CHIPTS) community advisory board and online listservs of HIV provider training organizations (e.g., California Prevention Training Center affiliated with University of California San Francisco, Pacific AIDS Education and Training Center). Some of the providers who helped distribute flyers were able to post physical copies in the clinics. Twenty interviews were conducted in English; one was conducted in Spanish by an interviewer (MG) fluent in Spanish. Our bilingual interviewers conducted phone screening for potential participants’ eligibility. We recruited study participants from clinics that serve predominantly Latine HIV care consumers, provided both English and Spanish flyers, and offered the option of a bilingual interviewer. Although we provided recruitment materials in Spanish and offered the interview in both Spanish and English, only one participant chose to conduct their interview in Spanish. Consequently, our sample lacked enough monolingual Spanish speakers. Because monolingual Spanish-speaking consumers of HIV care might face additional language and cultural barriers in health care settings,^49,50 future studies should intentionally recruit a greater number of individuals who speak only Spanish. The inclusion criteria were aged 18 years or older, HIV-positive (self-reported), and self-identification as Black and/or Latine. The recruitment was stratified by race and ethnicity as well as gender identity, with a roughly even split between male and female for each demographic group and one participant identifying as non-binary. The inclusion criteria for the study did not specify enrollment of patients who were dissatisfied with the health care system, or that they needed to be engaged in HIV care. Individuals who do not receive HIV care/not HIV-positive, cannot speak English or Spanish fluently, or do not identify as either Black/or Latine were not included in this study. Individuals with HIV co-morbidities were not excluded from the study. All participants received a $50 gift card incentive for participation.

Table 1.

Sociodemographic Characteristics (N = 21)

Characteristics	N (%) or M (SD, range)
Age (years), continuous	52.5 (12.7, 27-70)
Age (years), categories
18-29 years	2 (9.5%)
30-45 years	3 (14.3%)
46-59 years	10 (47.6%)
≥60 years	6 (28.6%)
Race and ethnicity
Black/African American	12 (57%)
Latine	7 (33.3%)
Black and Latine	2 (9.5%)
Assigned Gender at Birth
Man	9 (43%)
Woman	12 (57%)
Gender identification
Cis-gender Man	8 (38.1%)
Cis-gender Woman	12 (57%)
Man, non-binary	1 (4.8%)
Sexual orientation
Heterosexual	14 (66.7%)
Gay	6 (28.6%)
Lesbian	1 (4.8%)

Study team.

This study was jointly implemented by team members at RAND and California Prevention Training Center. The implementation of the interviews was part of a formative stage in an ongoing broader study. The larger study involves the development of an online HIV care provider intervention. The focus of the intervention is to help providers gain the knowledge and skills needed to address the impact of experiencing intersectional stigma and consequent medical mistrust. The study team engaged with community experts via the UCLA Center for HIV Identification, Prevention, and Treatment Services (CHIPTS) Community Advisory Board (CAB), who provided feedback on study research questions, methods, and preliminary results during the proposal process and the study.

The researchers involved in this study recognize the potential influence of individual subjectivity, positionality, and biases in the study development, data collection, and analysis. The interview guide for this study was developed by LD and LB. Three members of the team (TV, IG, and MG) conducted the interviews. Training and supervision for the qualitative interview protocol were provided by LD, a PhD-level psychologist of Asian descent. IG, identified as a Latina female, was a research assistant with prior experience in qualitative interviews. MG, identified as a Latina female, was a project coordinator experienced in qualitative interviews and analysis. TV identified as a Black gay man with experience in mental health counseling and provider training. Funding for this study was provided by National Institute of Mental Health (award number: NIMH R34MH126478).

Data collection.

Semi-structured interviews use open-ended questions to elicit in-depth narratives on the unique lived experiences of participants, providing the researcher the opportunity to widely explore emerging themes, while simultaneously maintaining structure in the interview.⁵¹ The semi-structured interview guide was created using evidence from the broader literature on the experiences of intersectional stigma among consumers of HIV care who are minoritized .¹³ The interview guide for this study was significantly influenced by the conceptual model of discrimination, medical mistrust, and HIV outcomes, which illustrates the pathways through which experiences of both interpersonal and structural discrimination either directly manifest poor HIV outcomes, or develop into medical mistrust, which then fosters overall poor HIV outcomes. The model posits that discrimination at both the structural and interpersonal level pre-empts mistrust which is then sustained via factors operating at several levels (e.g., individual, interpersonal, structural) of the healthcare ecosystem. .¹³ Sociodemographic information was collected from participants at the beginning of the interview. Probes were used to elicit narratives on participants' general trust and mistrust of health care, particularly HIV care, and their experiences of stigma and discrimination in health care. The interview guide investigated the topical areas of trust, mistrust, stigma, and discrimination in HIV care. Examples of questions posed under each of the topics addressed in the interview guide can be seen in Box 1. The interview protocol for the current study specifically inquired about participants’ experiences with HIV care and their HIV care providers. Findings from this study do not indicate study participants’ interactions within the health care system in general.

Box 1. Qualitative Interview Protocol.

Topics	Sample Questions
Trust and mistrust in health care	What makes you trust or not trust your provider? Can you tell me about a time that an HIV care provider did something that led you to trust them? Can you tell me about a time that an HIV care provider did something that made you not trust them? How comfortable or not comfortable do you generally feel sharing concerns with your HIV care providers about their treatment recommendations, such as a medication? Why or why not? Think about a situation where you did not trust your HIV care provider's treatment recommendations. What made the provider untrustworthy? Think about a situation where your HIV care provider seemed trustworthy. What made the provider trustworthy?
Stigma and discrimination in health care	What, if any, kinds of stereotypes and prejudice do you feel that your health care provider holds against you? Think about a time when you felt a health care provider treated you unfairly because of who you are (such as your racial or ethnic identity, your sexual orientation, your gender identity, or because you are living with HIV)? What were your responses (verbally or non-verbally) to this experience? How does this experience influence your view of health care and health care providers? How has stigma and discrimination affected your ability to seek healthcare when needed? What do you wish your healthcare provider to understand regarding the stigma and discrimination you experience in healthcare settings?

The interview guide could be administered in either English or Spanish. The Spanish version of the interview protocol was translated by MG, a native speaker of Spanish and English. All material and procedures used in this study were approved by the institutional review board of RAND Corporation. Informed consent to participate in the study and audio recording consent were both received from participants prior to commencing the interviews.

Data analysis.

All interviews were conducted on a video conference platform, audio-recorded, and transcribed. The interview conducted in Spanish was translated into English and analyzed together with the other interviews. All transcripts from this study were uploaded into a software platform for qualitative data management and analysis, Dedoose version 9.0.17.⁵² Conventional content analysis was used to derive meaning from the narratives shared by study participants.⁵³ Content analysis is a method of qualitative data analysis that allows researchers to create codes that preserve meanings from a broader body of narrative shared by study participants, identify categories and sub-categories within these codes, and draw themes from these categories.⁵⁴ Conventional content analysis is an approach where the researcher allows the data to generate new insights and categories rather than using pre-identified ones.⁵³

LD initially reviewed all the transcripts, identifying emerging preliminary codes as guided by the conceptual model of discrimination, medical mistrust, and HIV outcomes used for creating the codebook. Three coders LD, MG, and IG coded in pairs to test the codebook, discuss discrepancies and changes, and refine the codebook. An acceptable inter-coder reliability was achieved (Cohen’s kappa = 0.80, bias-adjusted kappa = 0.95, across four training transcripts) before coders independently coded the rest of the transcripts. The themes presented in the Spanish transcript were very similar to and consistent with the other transcripts. The primary categories that constituted the final version of the codebook included provider behaviors that increase care consumers’ mistrust, HIV care consumers’ experiences of intersectional stigma and discrimination in health care, and HIV care consumers’ behaviors when having medical mistrust. Post-coding, a fourth coder TEA reviewed all codes, categories, sub-categories, and themes to ensure integrity in the data analysis.⁵⁵

Results

Participant characteristics.

Table 1 presents the sociodemographic characteristics of the sample. The distribution of participants’ gender assigned at birth included male (n=9; 43%), and female (n=12; 57%), and their gender identity (i.e., as self-identified by participants) included cis-gender man (n=8; 38%), cis-gender woman (n=12; 57%), and non-binary, assigned male at birth (n=1; 5%).

Participants’ age distribution was: 18-29 years (n=2; 10%), 30-45 years (n= 3; 14%), 46-59 years (n=10; 48%), and 60 years and above (n=6; 29%). The average age was 52.5 years (SD=12.7 years, range = 27-70 years). The sexual orientation breakdown included heterosexual (n=14; 67%), gay (n=6; 29%), and lesbian (n=1; 5%). The racial and ethnic breakdown are Black/African American (n=12; 57%), Latine (n=7; 33%), and Black Latine (n=2; 10%).

Provider behaviors that increase HIV care consumer mistrust.

Lack of person-centered care.

Person-centered care is defined as providers recognizing the individuality of their care consumer and engaging in equally shared power and responsibility via the active acknowledgment of care consumers’ health goals.⁵⁶ In the current study, participants described a lack of person-centered care in terms of a lack of interest in care consumers’ health concerns. Participants identified attributes such as rushed appointments, not having sufficient time to address care consumers’ concerns resulting in a perceived lack of thoroughness, limited interaction during care delivery, lack of eye-to-eye contact during care delivery, and a lack of active listening, acknowledgment, and validation of HIV care consumers’ concerns, as markers of a lack of person-centered care. As one participant said: “[My provider] was not talking with a human being. He was talking with just another patient. You know it’s like while we’re working. No empathy.” [Man, Latine, 34-year-old]

Participants also described provider body language that would indicate a more person-centered approach to care. According to one participant: “What would make me not trust them is no eye-to-eye contact, strictly looking at the computer, not bothering to find out what is important or my input on what is going on with me.” [Woman, Black, 67-year-old] Participants indicated that they could perceive when providers show a lack of interest in their health concerns, which could limit the thoroughness of care delivery. A participant described one such experience:

I was experiencing extreme fatigue and I had concerns about resistance. So, I went to see my primary care physician and she said that “well, we're going to take labs. If there's anything wrong, I will make sure I reach out to you immediately.” Well, three weeks passed, and I had not heard from her. So, I went into the office to get a copy of the labs myself and saw an elevated viral load and I was just furious because they had the labs back in like three or four days and she broke her promise on trying to contact me. If I would not have discovered that myself right then and there it could have went on longer and who knows what would have happened to me.

(Man, Black, 50-year old)

Participants described instances of providers not acknowledging or validating their concerns leading to an increase in mistrust towards providers. Participants distinguished between providers passively listening versus actively acknowledging their concerns and making health care decisions accordingly. Participants expressed instances when they complained about their medications and side effects, and the provider did not address their concerns. A participant explained what active listening resembled in the context of their patient-provider relationship:

When I speak, I can tell if you're just listening to me or have heard me. People don't look at that. It's a difference between “Yes, I'm listening.” But did you hear me? Did you hear my words? Because if you heard my words okay, you know, the response that I would get would pretty much fall with it. You will be meeting me where I’m at.

—(Woman, Black Latine, 54-year-old)

Lack of partnership in health decision-making.

Participants expressed that they would prefer providers to engage them in health decision-making. They identified instances when providers have failed to engage them in decision-making, acting as though only they knew what was best for their care consumers. As one participant explained, “in the past, providers have brushed off things like ‘take this medicine because I said so…I’m the doctor…I know what’s best for you’” [Woman, Black, 57-year-old ]. Participants also expressed mistrust toward providers who withhold information pertaining to their health and provide insufficient information about recommended medications and treatment plans. As a participant said,

There is no I in the team. It’s a four-letter word. There’s no I. How are you gonna make it like it’s about you? I gotta do what you say. No. I am the patient. They don’t get that. They just don’t.

—(Man, Black, 57-year-old)

Perceived provider incompetence.

Participants shared that mistrust stems from concerns about perceived levels of provider technical competence. As one participant shared: “I was seeing a provider who actually gave me the wrong dose of medication and almost caused me to overdose.” [Woman, Black, 48-year-old ] Participants expressed mistrust for providers who attempt to address health issues that are beyond or outside of the confines of their training or credentials. Participants also expressed suspicions for providers who recommend switching to a new treatment plan when the current plan is working for them. As explained by a participant:

[It] makes me not trust them when they don’t tell me everything. When they don’t tell me everything and I find something on my own or from another company, I start to think that it’s time to switch. If something is working for me and they tell me I should change, that’s another thing that makes me not trust them. Why do you want to change something that I know is working for me?

—(Man, Black, 66-year-old)

Participants perceived provider incompetence when providers could not provide adequate or correct answers to questions they posed regarding their health. Even more, providers who recommended the same course of treatment for several individual care consumers with differing cases were perceived as incompetent and inspired some mistrust among participants. According to another participant:

I was in a situation where I overheard that the doctor was just offering the same recommendations to everybody. You know her clients talk right? The provider had given multiple women the same diagnosis and I was wondering if that was possible. That made me feel uncomfortable.

(Woman, Black, 57-year-old)

Participants recounted instances where they endured side effects from their medication necessitating a change in providers to obtain prescriptions for medications with fewer adverse side effects. This evoked mistrust towards those providers who continued to prescribe medications that caused side effects. Additionally, participants' mistrust deepened when they discovered that their providers either withheld critical information, provided inaccurate details about their health issues, or were not candid about the potential side effects of medications or their diagnosis.

Lack of adequate follow-up to care.

Participants expressed mistrust for providers who did not engage in adequate follow-up to care. Participants expressed frustration with providers who do not make follow-up calls, especially after prescribing a new medication, engaging in a new health regime, or receiving information that is detrimental to the care consumers’ health status. One participant said they never received a follow-up call checking on the status of their health after they told their doctor’s office that they had COVID-19. Another participant described an experience when their health provider did not follow up on lab work:

I was experiencing extreme fatigue and I had concerns about resistance. I went to see my primary care physician and she said, “Well we’re going to take labs. If there’s anything wrong, I will make sure I reach out to you immediately.” Well three weeks passed, and I had not heard from her. So, I went to the office to get a copy of the labs myself and saw and elevated viral load. I was just furious because they had the labs back in three or four days and she broke her promise on trying to contact me. If I had not have discovered that myself right then and there, it could have gone on longer and who knows what would have happened to me.

(Man, Black, 50-year-old)

Lack of trustworthiness of care providers.

Participants shared concerns and suspicions of provider financial gain, asking whether providers might be quick to prescribe pills whenever they have a health concern. One participant said, “But then you say something, and oh we’ll give you a pill for this, give you a pill for that. It isn’t a good solution.” [Man, Black, 57-year-old ] Participants wanted to be treated as more than “just a number” who is helping the health care institution or provider make profits, as noted by this participant:

What makes me not trust a provider is when they only see me as a patient, only see me as a number, only see me as someone who is helping the facility make money. Someone like that, I don't trust because I don’t think I’d be getting adequate care.

—(Man, Black Latine, 34-year-old)

Participants also expressed displeasure that salespeople can walk into a clinic and sell medication to a provider, who may then recommend these medications to their care consumers. As one participant said,

I was in a clinic once where those salespersons would come in and try to convince us that this is the best medication to take. I don't like that…I don't like the fact that the drug companies just come in secretly and try to convince the doctors to give us stuff and then the doctors decide, “Okay well why don't you try this? Because this is a sample of what the drug company gives us.” So that’s a problem. The samples. I hate the samples.

—(Woman, Black, 57-year-old)

Lack of trustworthiness of health care organizations.

Suspicions of financial gain were extended to the pharmaceutical companies. One participant believed their provider was receiving an incentive for prescribing a medication:

A lot of these doctors were getting kickbacks for you being on this one regimen because they were promoting it. They were promoting that medication. They were backing it. You want the patient to be on that medication because you get a little kickback from [your patient] being on that cocktail. Why do we have to be the guinea pigs? Why do we have to suffer for this you know?

—(Man, Black, 57-year-old)

Experiences of discrimination in health care.

Participants described their experiences of discrimination within health care, including perceived discrimination because of their intersecting identities. As one participant mentioned, “Being a struggling Latin in itself, you know, they don’t see us.” [Man, White Latino, 55-year-old] One study participant mentioned receiving advice from their providers that seemed based on biases against their positive HIV-status. One participant, an immigrant, described an experience with a provider in their home country who discouraged her from having another child: “No, why are you going to have another child? You have HIV.” [Woman, Black, 48-year-old] This same participant described an experience in which another provider in her home country was against her having a sexual relationship due to her HIV status.

I’ve had a negative partner…for the last 20 years. I was honest with him up front, and he knows my status. We went to a doctor’s appointment together. One of the nurses at the infectious disease clinic in my country brought him into the clinic and got him tested with no counseling. And she said, “Why are you with her, do you know you cannot have sex with her. Do you know she has HIV?”

—(Woman, Black, 48-year-old)

Participants also expressed perceptions of racial bias due to observed differential care outcomes or delayed care delivery. One of the study participants attributed a 10-hour wait in receiving care to their identity as a member of a racial/ethnic minority group. Another participant described an experience in which they perceived some racial discrimination in the services they received:

I have a friend who recently tested positive for HIV, and he goes to the same place I go. I have been going there for two or three years and he for about three months. His provider told him that he can transition from the pills to one shot every month. My doctor never told me about that. I don’t know if that is discrimination because my friend is White, but he had more options, and I did not.

—(Individual, Latine, non-binary 34-year-old)

Participants also expressed expectations for institutions to increase trustworthiness at the organizational level.

I don't think anybody should be discriminated [against] because of their gender and the status of HIV and that goes even from the reception area all the way to the doctors. That goes to every staff member that is there, affiliated in that clinic. Because if the reception person when you first meet them treats you bad and rudely, then you know that there's a problem.

—(Woman, Latine, 59-year-old)

HIV care consumers’ reactions to providers’ lack of trustworthiness.

Participants described their behaviors and reactions when they developed medical mistrust, including changing providers and engaging in self-advocacy.

Changing providers.

Participants tended to change providers if they developed mistrust for their provider. VB Participants described changing their provider when they perceived provider incompetence, lack of provider empathy, and discomfort/concerns with care delivery. As a participant described: “I actually changed [my provider]. We don’t see eye to eye. I have no faith in that person. You know, I will actually change immediately if I’m feeling uncomfortable with that person.” [Man, Black, 70-year-old ]. Even though participants were receptive to changing providers in the context of mistrust, they also were aware of the challenges and complexities that accompanied making such a switch. One of the participants mentioned some of these challenges:

The search of looking for another provider…will be a problem. That will be another problem. Yes because…I won't get my medication on time. I won't get, you know, if I need vaccines or vaccinations or shots, I won't get that on time. I would have to feel comfortable again with another doctor.

—(Woman, Latine, 59-year-old)

Self-advocacy.

Participants reported that they engage in self-advocacy when they experience medical mistrust. Participants described raising health issues and concerns with their providers or asking pertinent questions to draw attention to lapses in providers’ judgements. As a participant highlighted: “I always ask questions. I was never the one that don’t ask questions. I question everything.” [Man, Black, 70-year-old]. Participants shared experiences of verbally addressing issues of provider negligence, which resulted in attention to lapses in care delivery. However, in cases where their concerns remained unresolved, participants felt compelled to change providers. As explained by one of the participants:

If I had some concerns that I didn't trust [my provider], I would just sit with them and say, “You know what, I really don't trust what you're telling me. You know, and I would like you to explain to me what is happening…so I could start feeling comfortable.” And if I don't feel comfortable and understand, I go look for another provider.

—(Woman, Latine, 50-year-old)

Participants expressed willingness to advocate for themselves with their providers, as a means of taking ownership for their health outcomes. As one participant described that they have these conversations because they have more knowledge of themselves than anyone else.

I tell them ‘well if you're gonna give me a medication, I need to know what it’s for and why I need to take it. If there's another alternative.’ Because this is my life that I got to deal with. This is my body. I know my body. I know the aches and pains that I go through. If I'm telling them I’m going through something and this is not working, we need to sit down and figure out how we're going to do this.

—(Man, Black, 57-year-old)

Self-advocacy extended to participants engaging in research to better understand the effects of prescribed medications and addressing this with their providers:

I had a situation with the medication I was taking at one time, and I addressed it. They gave me information about it; I Googled it as well. I addressed it and then I switched from that medication I was taking that wasn’t agreeing with my body.

—(Woman, Black Latine, 52-year-old)

Another participant mentioned that they feel comfortable conducting their own research on treatment options because they had lived with HIV for a long time. According to this participant:

I’m a woman living with HIV and AIDs for over 30 years. So when I want something, I look at it, I do research, I read about it. When I want something, I go to the doctor, and I talk to him about it. I feel very comfortable talking to my doctor already.

— (Woman, Black Latine, 52-year-old)

While some participants did their own personal research to be informed about their health, one participant explicitly mentioned that they engaged in research due to a lack of trust for their provider’s recommendations. “I don’t trust any providers’ recommendation. I do research on it and then I get back to them.” (Man, Black, 57-year-old ). Participants shared how they want to be engaged in their health decision-making while being educated and informed throughout this process. This was described by one of the participants who mentioned their intentional engagement in self-education.

Positive experiences with HIV care specialists.

Study participants described positive experiences with HIV care specialists who showed empathy, compassion, and care. As one of the study participants highlighted, “I have had four specialists in my 32 years of being HIV-positive and each of them have been very empathetic, compassionate, and caring individuals…I don’t have anything negative to say about them.” (Woman, Latine, 55-year-old ). Study participants also had positive experiences when their providers showed competence and displayed knowledge when providing care. One of the study participants described a positive history with his provider:

She ain't just checking to see what will happen. She let me know, “This is gonna work for you. I can tell by your blood is running where your chest is coming back. This is gonna be good for you,” and it is. Like I said I’ve been undetected for the past 10 years. She is excellent.

—(Man,Black,66-year-old)

Study participants also described positive experiences with providers who carried them along while providing care. As one of the study participants described it:

I have a beautiful HIV care provider and she is, right now, the top of the line…I wouldn't change nothing from the world for [her]. I listen to anything [she] tell[s] me because we've worked as a team. You sit there, we discuss together on what it is that needs to be done and on what she thinks I need to do. That's the biggest thing that anybody can do.

—(Man, Black, 57-year-old,Black)

Discussion

These findings highlight the perceptions of consumers of HIV care of provider behaviors that increase or decrease consumers’ trust and mistrust, consumers’ experiences of intersectional stigma and discrimination in health care, and consumers’ behaviors when experiencing discrimination and medical mistrust within the health care system. Participants in this study identified behaviors that increase medical mistrust including lack of person-centered care; lack of partnership in health decision making; perceived provider incompetence; lack of adequate follow-up to care; and lack of trustworthiness of care providers and health care organizations. Person-centered care, a priority for study participants, has shown benefits in improving HIV care outcomes (e.g., viral suppression) and increasing adherence and engagement with HIV care.^57,58 Notably, person-centered care has been recommended as a potential strategy for reducing medical mistrust.⁴¹ Future research may empirically examine the effects of a person-centered care approach on care consumers’ experiences of intersectional stigma and discrimination within the health care system, and whether it may help reduce medical mistrust.

The current results indicate collaboration and partnership in health decision-making, as a facilitator of trust. Shared decision-making may allow people living with HIV to take control of their care and cope with the emotional and psychosocial challenges of having HIV and receiving treatment.⁵⁹ For instance, one study found that 63% of consumers of HIV care in their sample favored collaboration in decision-making, increasing their likelihood of adherence to antiretroviral therapy.⁶⁰ This indicates the possibility that increased participation in health decisions among consumers of HIV care may increase their adherence to treatment plans.⁶¹ Researchers may further explore the relationship between shared decision-making and providers’ trustworthiness, care consumers’ trust and mistrust outcomes among populations experiencing intersectional stigma and discrimination. Study participants showed dissatisfaction with inadequate follow-up to care. Study participants discussed dissatisfaction within the context of factors that increase/decrease trust and medical mistrust. Meanwhile, health care dissatisfaction has been associated with medical mistrust as seen in prior studies.^39,40,62

Participants in this study emphasized HIV care consumers’ mistrust of the health care system and providers based on suspicions of financial gain fueling provider prescription practices and specific mistrust of pharmaceutical companies. These findings are similar to those from another qualitative study showing the association between mistrust of prescribed medication and pharmaceutical companies, and poor medication adherence.⁶³ Moreover, participants in our study identified perceived provider technical incompetence as a factor that increases medical mistrust, which is consistent with the literature showing a significant association between trust in provider competency and medical mistrust.⁶⁴ There is need for more quantitative research on the relationship between HIV care consumers’ perception of provider competency, their experiences of intersectional stigma, and trust and mistrust towards providers.

According to participants in the current study, experiences of stigma and discrimination such as observing differential care outcomes and delayed access to care compared with other racial and ethnic groups increase medical mistrust toward providers and the health care system. These findings complement results from quantitative studies that have found a significant association between perceived discrimination and increased medical mistrust among populations who are minoritized and HIV-positive. ^26,65-67 This evidence underscores the need for interventions at the provider level aimed at enhancing the comprehension of the link between intersectional stigma and medical mistrust. It also identifies the importance of providing training to health care professionals to increase trustworthiness in their interactions with care consumers, reduce providers’ stigma, and be more trustworthy, by equipping them to be less stigmatizing and address medical mistrust in a manner that is culturally sensitive.

Self-advocacy ^68,69 is a strategy that participants in the current study employed when experiencing discrimination and medical mistrust within the health care system. Self-advocacy was manifested through a range of actions, including asking questions, openly addressing instances of perceived provider negligence in care provision, and undertaking additional research beyond the scope of the providers' suggestions. Findings from this study contribute to existing literature that displays HIV care consumers’ strategies for responding to health care discrimination both at the individual and systemic levels.⁷⁰ Future studies should further examine the pathways through which self-advocacy may serve as a protective mechanism between HIV care consumers’ experiences of discrimination and medical mistrust and poor health outcomes. Such studies would provide further insights into how to mitigate the negative impacts of these experiences on health care outcomes.

This study has limitations which include the lack of sufficient sample to assess all categories of intersectionality. Specifically, the study sample did not include all subgroups of populations who identify as Black and Latine with HIV, such as those who are transgender and/or monolingual Spanish-speaking individuals. Thus, the sample population may be insufficient in assessing different individual experiences with intersectional stigma and drawing a conclusion about the experiences of members of these populations. Additionally, data for this study were collected during the COVID pandemic, and HIV care consumers’ reported experiences may have been influenced by factors particular to this period (e.g., overburdened health care system, psychosocial concerns).^71,72 Other limitations of this study include those that are associated with the use of qualitative interview methodologies. The study is not exempt from common limitations such as self-desirability bias, recall issues, and confirmation bias.⁷³

The current findings contribute to the existing literature on the perceptions of consumers of HIV care on providers’ behaviors that may impact medical mistrust and care consumers’ experiences of intersectional stigma and discrimination. Patient-level interventions have been developed through increasing effective coping with discrimination and addressing medical mistrust in populations who are Black and/or Latine and identify as sexual minority individuals living with HIV to improve adherence.^74,75 Despite these advances, there is a growing acknowledgment of the imperative need to formulate interventions at the provider- and health care system-levels to reduce discrimination and increase their trustworthiness. A few health care provider interventions have been conducted to increase patients’ trust in their own provider through increasing providers’ cultural competency and empathy for patients; however, these interventions have generally not shown efficacy on increasing trust.^76-78 Despite the existence of these studies, none have been specifically targeted toward addressing general medical mistrust or HIV-related mistrust, and no provider interventions have been specially designed for HIV care.^13,76 The current findings suggest the need for a provider intervention designed to tackle medical mistrust among consumers of HIV care who are Black and Latine. It might also be beneficial to explore HIV care provider perceptions of behaviors that foster medical mistrust and experiences of discrimination among their care consumers. Given the dearth of studies on consumers of HIV care perceptions of provider behaviors and their reactions when experiencing medical mistrust during provider-patient communication, our study makes a unique contribution in behaviors and responses of patients who are Black and/or Latine and have HIV when confronting discrimination and medical mistrust within the health care systems.