Conspiracy beliefs are not necessarily a barrier to engagement in HIV care among urban, low-income people of color living with HIV

Abstract

Background:

HIV-related “conspiracy beliefs” include ideas about the genocidal origin of HIV to target minority people, and the notion that a cure for HIV is being deliberately withheld. Previous literature suggests these beliefs may negatively affect engagement in HIV care and ART adherence, but little is known about how people who are disengaged from care may think about these ideas.

Methods:

Twenty-seven semi-structured interviews were conducted with low-income Black and Hispanic people living with HIV in NYC who were currently disengaged from, or recently re-engaged in, HIV care.

Findings:

The data suggest HIV-related “conspiracy beliefs” are not necessarily a barrier to care. Regardless of whether or not people endorsed these ideas, participants were largely dismissive, and prioritized focusing on managing their HIV and overall health and life challenges.

Recommendations:

Interventions aiming to improve ART adherence and retention in HIV care should focus on building trust between clinicians and populations that have experienced historical, as well as ongoing, marginalization. HIV care providers should ask patients open-ended questions specifically about their beliefs about HIV and ART in order to address potential suspicion. Moving away from the phrase “conspiracy beliefs” in favor of more neutral language, such as “HIV-related beliefs”, can enable us to better understand these ideas in the context of people’s daily lives.

Conclusions:

Further research is needed to better understand how structural inequality may shape how people experience mistrust, and how mistrust may factor into the constellation of barriers to consistent engagement in HIV care.

Background

With the development of highly effective antiretroviral medication (ART), HIV care has shifted away from the infectious disease model to the chronic illness care model [1]. As such, retention in care and adherence to HIV medication are considered integral components of the HIV care continuum, as optimal adherence is required for viral suppression [2]. The CDC indicated that failed linkage to care and retention in medical care are the two most important opportunities to achieve a suppressed viral load. Retention is critical because sub-optimal adherence to ART regimes contributes myriad to poor HIV-related health outcomes, as well as increased rates of HIV transmission through sexual and drug using partners [3, 4].

Racial, ethnic, and sexual minority people living with HIV (PLWH) have particularly lower rates of engagement in HIV medical care [5, 6]. Similarly, groups with lower socioeconomic status tend to have lower rates of medication adherence as compared to higher socioeconomic status groups [7]. PLWH rarely face a single barrier to medication adherence; rather medication adherence is often the result of overlapping and mutually reinforcing barriers that act systemically [8] to negatively affect ART adherence [9]. The literature has explored substance use, housing instability, poverty, and medical mistrust as some of the many drivers of disengagement from care and poor ART adherence. The latter, medical mistrust, including HIV-related “conspiracy beliefs,” is largely attributed to racial and ethnic minority populations, particularly African Americans, and is thought to stem from both historical and ongoing racism and discrimination in the health care system [10].

The research on HIV-related “conspiracy beliefs” has largely explored this phenomenon in the context of two sub-categories: genocide-related and treatment-related beliefs [11]. Genocide-related beliefs include the idea that the government has been involved in creating or maintaining HIV/AIDS as a form of genocide against African Americans, other racial and ethnic minority groups, and socially marginalized populations, such men who have sex with men (MSM) and drug users. Previous research on treatment-related beliefs has explored the notion that anti-retroviral therapy (ART) is used to experiment on or kill those who take it, or that a cure is available but is being secretly withheld by the government and/or pharmaceutical companies to profit from the sales of ART medication [12–14]. The public health literature has documented these beliefs as negatively affecting several sexual health-related behaviors and outcomes, including HIV testing [15, 16], condom use and birth control [17, 18], HIV vaccines [19, 20], and participation in HIV-related clinical research [21, 22]. There is, however, substantially less literature exploring the relationship between “conspiracy beliefs” and engagement in HIV care and ART adherence [23–26]. Moreover, the findings are somewhat mixed regarding whether endorsing such beliefs negatively affects engagement in HIV care and ART adherence and the majority of this work is quantitative in nature.

In a recent systematic review of the literature on African Americans’ beliefs and HIV medical care, Gaston and colleagues concluded that “conspiracy beliefs,” racism and discrimination in the health care system and the quality of the patient-provider relationship were the three main factors affecting engagement in HIV medical care [10]. A qualitative study by Beer et al. found that among African American men who had been out of care for six months, mistrust of health care (including “conspiracy belief”-type ideas) was a key factor in people’s decisions to engage in care, and appeared to account for suspicions toward the medications recommended to them by their providers [25]. In contrast, in a study of young racial and ethnic minority MSM, researchers found that most of the sample endorsed some type of HIV-related “conspiracy belief,” but that endorsing such beliefs was not associated with CD4 count at the time of diagnosis, linkage to care or retention in care [26]. However, endorsement was correlated with negative attitudes toward HIV medication. The authors noted that they did not specifically assess medication adherence, and that participants received linkage, case management and clinical services, which may have offset any negative effects. Finally, in a qualitative study exploring the relationship between racism and suboptimal engagement in HIV care, researchers found that fear and medical mistrust did not necessarily eliminate willingness to participate in health-related research [27].

Regarding ART adherence, most studies suggest that “conspiracy beliefs” are likely a barrier to optimal adherence. The exception is a 2008 study that found that conspiracy beliefs were not associated with delayed HIV diagnosis, or with ART adherence. However, researchers found that endorsing conspiracy beliefs was associated with higher CD4 counts at diagnosis [23]. This study did not specifically look at each racial/ethnic group separately and noted that the study’s recruitment focused on patients already engaged in care, and thus did not necessarily represent people living with HIV/AIDS with more extreme or deeply held “conspiracy beliefs” who do not interact with the healthcare system around their HIV illness. In contrast, several studies have suggested such beliefs have a negative impact on adherence. In a study on conspiracy beliefs among African American men, endorsing “conspiracy beliefs” was associated with lower odds of optimal adherence at the one month follow up visit [11]. In a follow-up study, the same researchers found that endorsement of “conspiracy beliefs” by members of one’s social networks was significantly associated with participants’ ART non-adherence. Notably, the authors argued that previous studies that demonstrated null findings regarding the relationship between HIV-related “conspiracy beliefs” and ART adherence included groups other than or in addition to African Americans and this make-up of the sample may have been obscured or attenuated the relationship between African Americans’ beliefs and non-adherence [24].

Overall, previous studies on the relationship between HIV-related “conspiracy beliefs” and engagement and adherence have produced mixed results, suggesting more research is needed to better understand the potential relationship HIV-related “conspiracy beliefs” and how people manage their HIV and overall health. Moreover, a qualitative approach can add to our understanding of how disengaged people contend with HIV-related “conspiracy beliefs,” and help contextualize some of the previous findings by enabling people to articulate, in their own words, their understandings and experiences [28, 29]. In addition, most of the existing literature has examined the beliefs of PLWH who were, to some degree, already engaged in care. Exploring these ideas among a population that has experienced being fully disengaged from care can help us better understand the role of HIV-related “conspiracy beliefs” among a little understood and difficult to reach population, and arguably the population that could most benefit from these findings. Thus, the purpose of this paper is to examine the accounts provided by Black and Hispanic people living with HIV that had recently been, or were currently, disengaged from care, regarding the possible relationship between their HIV-related “conspiracy beliefs” and their engagement in care and ART adherence.

Methods

Sample study population and recruitment

From July 2015 to May 2016, 27 semi-structured interviews were conducted using a purposive sample of low-income Black and Latinx PLWH living in New York City. The study presented here utilized a convenience sample from a larger NIH-funded study on disengagement from HIV care (the latter hereto referred to as the parent study). The parent study recruited individuals who were hospitalized overnight or longer at the university hospital for their untreated HIV, and this study followed up with a subset of individuals one to three years after their initial hospitalization/parent study participation. The parent study assessed disengagement in multiple ways using several criteria based on the literature and clinical gold standards [30, 31]. These items assessed the following: 1) if the individual’s CD4 cell count was under 350; 2) if the individual had been seen by an outpatient HIV care provider in the past six months; 3) if the individual missed even one scheduled outpatient HIV care clinic visit; 4) if the individual was taking HIV medication at time of study enrollment, and 5) if the individual had attended two or more scheduled HIV care visits in the past 12 months, and if so, were these scheduled visits separated by three months or longer. At the time of the study described here, participants were currently disengaged from outpatient HIV care, had recently re-engaged in care, had been disengaged within the previous one to three years, or were still in the process of re-engaging. While the sample of participants was originally recruited at a single hospital via the parent study, they had histories of attending clinics across NYC and the greater metropolitan area. Thus, participants’ experiences are not limited to a single outpatient clinic [32].

Locating potential participants was difficult due to their minimal engagement with the healthcare system related to their challenges with housing instability, substance use and poverty. The first author employed several HIPAA-compliant strategies to locate potential participants, including contacting family and friends using information they provided in the parent study, connecting with case managers and social workers, and working with the university hospital’s patient coordinator to monitor new in-patient admissions. Ultimately, thirty-three individuals were successfully contacted using contact information they provided in the parent study, and a total of 27 participants were interviewed. Two declined participation, citing lack of time. One individual agreed to participate but was found to be mentally incompetent and thus unable to provide consent, and the remaining three were initially reached via telephone, but their numbers appeared to go out of service or change before an interview could be scheduled. The Columbia University Institutional Review Board approved this study.

Data collection

Quantitative assessment

Prior to the qualitative interview, participants completed an interviewer-administered questionnaire (IAQ). This five to eight-minute survey gathered sociodemographic and health status information. The IAQ did not assess so-called “conspiracy beliefs” to allow these ideas to emerge spontaneously and organically in the in-depth interview. Although there are mistrust and “conspiracy belief” scales [33–35], we were interested in allowing participants to articulate their ideas in their own words and therefore elected not to administer these scales in the IAQ.

Qualitative interviews

Semi-structured qualitative interviews have the potential to generate novel insights by allowing study participants to articulate their HIV-related beliefs in an open-ended manner, from their own perspectives and in their own words [28, 29]. Given the sensitive nature of the topic of “conspiracy beliefs,” qualitative interviewing honors the participants’ ways of thinking and expressing themselves. The first and last authors developed a semi-structured interview guide to examine challenges related to engagement in outpatient HIV care and antiretroviral (ART) adherence. Topics included questions about experiences with outpatient HIV care, medication adherence, experiences with taking ART, and other potential barriers and facilitators related to engagement in care, such as housing instability or substance use. The guide also had a subsection on HIV-related beliefs. This subsection was designed to explore people’s ideas and beliefs about HIV in general, as well as HIV-related “conspiracy beliefs.” It is important to note that in most cases, the topic of these types of beliefs arose naturally in the course of conversation (i.e., participants themselves raised the topic of HIV-related beliefs, such as the origin of the virus or the existence of a cure). In absence of that, the interviewer used the following questions to probe participants’ beliefs about the origin and nature of HIV: “What is your understanding of what causes HIV/AIDS?”. This question was effective in encouraging participants to begin discussing their beliefs. When necessary, participants were probed further to encourage them to talk about what they have heard about HIV, and what they may believe themselves. The following is the statement made by the interviewer, followed up by a question, when the topic of these kinds of ideas had not yet been raised in the interview: “We’ve talked to lots of people with HIV or AIDS and about their experiences with living with the illness. Some people have told us that they believe that HIV/AIDS is man-made. Others have said that there is a cure but it is being withheld. We have also come across people who think that HIV was created to infect particular groups. Have you ever heard of these ideas or any ideas similar to these?” This statement was phrased to introduce the various types of beliefs about HIV without directly or immediately asking the participant their personal beliefs. This phrasing appeared to encouraged participants to discuss things they may have heard about generally, and then become more comfortable with sharing their own beliefs (follow up questions included, “What are your thoughts about these ideas? What have you experienced or observed that lead you to think that?”). Importantly, the word “conspiracy,” was not used in the guide, or used by the interviewer at any time. On average, interviews lasted approximately 45 minutes, although some interviews were shorter due to participants’ poor health. Data collection concluded when thematic saturation was achieved at 25 interviews [36]. To confirm that saturation was reached, two additional interviews were conducted for a total of 27.

Data analysis

All qualitative interviews were audio recorded for professional transcription. Twenty percent of the transcriptions were randomly selected for quality control and accuracy. The lead author implemented a multi-step method of conducting an analysis to systematically identify and contextualize the themes emerging from the data. This process included the development of a coding scheme, applying it to the data, and using it to identify patterns, themes and subcategories. After all transcripts were coded, text segments organized by codes and subcodes and were extracted and examined to begin identifying a higher level of abstraction in regard to themes, and to discern the relationships among codes. The research team utilized several strategies to establish trustworthiness, particularly credibility and confirmability, in the analyses [37]. Throughout the investigation, the first and last authors, as well as other members of the research team, closely reviewed the analyses to engage in peer debriefing and memoing exercises, and to address any conflicting interpretations. Moreover, the authors employed periodic external audits with researchers who were not involved with the study presented here [37]. The software Atlas.ti was used to organize the qualitative data, and data from the IAQ were analyzed using SPSS and used to generate a description of the sample of participants.

Results

Socio-demographic characteristics

Of the 27 participants, 59% were female (n=16), 41% male (n=11), 78% non-Hispanic Black (n=21) and 22% Latinx (n=6). Participant age ranged from 28-55. All of the participants had Medicaid, and most (89%) reported being unemployed at the time of the interview. Most participants (89%, n=24) reported being unemployed at the time of the interview; 11% (n=3) of the sample was employed either part-time or full-time. Ninety-three percent (93%) reported that they lived in housing supported by the New York City-funded HIV/AIDS Services Administration (HASA), other public assistance-funded apartments, or single room occupancy housing (SROs). The remaining participants were homeless (30%), living in a nursing home or hospice (11%), or had no financial assistance for housing (7%). Homeless was defined to participants as “not having a place to sleep at night.” Some participants who were living in SROs also reported that they were homeless.

Qualitative findings

Theme: “Conspiracy beliefs” are not necessarily a barrier to HIV care

This sample comprised individuals who had all recently contended with the challenges associated with being disengaged from outpatient HIV care. At the time of the interview, some participants reported having been able to successfully re-start clinic visits and re-start an ART regimen. Others were still struggling with being out of care but were planning on re-engaging in the immediate future. Importantly, participants in both groups-engaged and disengaged-articulated that “conspiracy type”-beliefs were not priorities in the way that they think about and manage their health. Moreover, some of these participants also endorsed these kinds of beliefs [38], but as we explore below, they did not view these beliefs as posing a barrier to the management of their HIV. Indeed, participants’ narratives revealed that they preferred to avoid discussing, thinking about or expending energy on the possible origins of HIV, or the possibility that a cure already existed but was being withheld. For those that had successfully re-engaged in care, participants expressed a dismissive attitude toward discussing or even thinking about such ideas. In doing so, they revealed what did in fact matter to them-taking care of their health, and by extension, preventing others from getting HIV. Among those that were still struggling with the re-engagement process, it appeared that even the mentioning of such ideas led them to “block [it] out,” and to explain why thinking about these ideas were irrelevant to the management of their daily lives, and perhaps even distressing.

Among those engaged in care: dismissive ambivalence of beliefs, and focusing on one’s health

For those who had successfully re-engaged in care or re-started ART, discussion of HIV-related “conspiracy”-type beliefs often garnered an ambivalent reaction. Even though many participants in this sample endorsed variations of these kinds of beliefs [38], these ideas did not appear to have a direct role in affecting how people think about their HIV care. Ultimately, these kinds of beliefs “didn’t matter” because participants perceived HIV as an irreversible disease that can be a chronic condition if taken care of properly.

Myra, a 44-year-old Black woman, was diagnosed in 2012 and had never engaged in care until approximately two years prior to the interview, when she became stably housed after a period of homelessness that spanned a decade. She reported that she was her doctor’s “star patient”, and was doing very well taking care of her health. Myra was not particularly interested in thinking about or discussing any origin or cure-related beliefs, as she was focused on managing her health:

It really doesn’t matter to me actually…I wouldn’t know. It doesn’t make a difference. Once you have it you have to treat it. If you don’t, you just basically die, and you could affect others and others that don’t know that they have it. You’re forcing them to not treat theirself. [Myra]

Tina, a 53-year-old Black woman, was diagnosed in 1995. She was engaged and undetectable at the time of the interview, after many years struggling with forgetting to take her ART, and missing appointments due to “runnin’ the streets” and “being in denial.” Tina’s explained that the possibility of a cure did not impact her daily life, nor her desire and ability to consistently remain on her ART. She was not interested in investing time and energy in pondering whether such ideas were true or not:

I hear, but I don’t listen to everything I hear. ‘Cause if it was really out there, I think somebody would’ve brought it out, said somethin’, and put it out in the like—I don’t know. I don’t know. I don’t even think about that. I just take my pills. [Tina]

Maria, a 34-year-old Latina woman, was diagnosed in her early twenties. She was undetectable for the first time in her life, and living in a nursing home at the time of the interview. She attributed her previous disengagement to her alcohol abuse, but at the time of the interview had been sober for approximately a year and a half, and this enabled her to manage her multiple health issues, including HIV and recently being diagnosed with narcolepsy. Below, Maria emphasized the importance of managing and preventing HIV over thinking about the possible origin of HIV, and described these types of ideas as “stereotypical”:

I never inquired more about it, because I really don’t care. [Laughter] I just care about being healthy and living…Honestly, if you ask me, I really don’t care where it come from. I have it and I need to get rid of it. You know what I’m saying? [Laughter] It’s not my judgment of who made it or who passed it around or just those stereotypical things. I really don’t care. The only thing I care about is to help stop it, to help reduce it, and to help people just take care of it… It really doesn’t matter where it was made at. What matters is that, what are you gonna do about it? [Maria]

The following participant, Andre, a 33-year-old Black man, had been consistently engaged in care for nearly three years. Prior to that, he had struggled with the loss of support from his family upon coming out as gay, and had never been successfully linked to care when he was diagnosed with HIV. He expressed that while he was overall ambivalent and perhaps suspicious of the pharmaceutical industry, these ideas were not barriers to managing his HIV:

I’ll be honest I really don’t have any opinions on that…My experience is I took the medication and I felt better. I’m not going to stop taking the medication because I definitely felt better and, yeah, it sounds like a bit of conspiracy theory going on there. You know what, it could possibly be true, but currently my experience with the medication is I feel much better. I have not been hospitalized since. I go get my checkups and whatnot. [Andre]

Aliyah, a 28-year-old Black woman born with HIV, had been adherent to her ART regimen for a full year at the time of the interview. Although she dissatisfied with her current HIV care provider, she was hoping to change to a different physician in the near future and had remained adherent despite her poor patient-provider relationship. As with the participants quoted above, Aliyah also chose to focus on the importance of managing one’s HIV, rather than think about the possibly nefarious origin of HIV. When was asked by the interviewer if she had ever talked to a medical provider about these ideas, she responded:

I think that’s one of the reasons why I just don’t bring it up because I’m not truly concerned why it happened. It’s like a broken foot; you got it, let’s deal with it. Why it happened is irrelevant or where you got it from is irrelevant now “cause you have it. [Aliyah]

Among disengaged and inconsistently engaged: “Blocking out”potentially distressing ideas to focus on one’s health

For those that were still struggling with disengagement, “conspiracy belief”-type ideas appeared to be potentially distressing in the context of contending with multiple social and economic burdens. Specifically, thinking about or dwelling on the possible origins, or the idea that they may be missing out on a cure was perceived as unproductive, or even perhaps destabilizing. This avoidant stance was associated with discussions of the issues participants did in fact want to focus on, namely managing their HIV, their overall health, and dealing with other pressing challenges in their lives.

Juan, a 49-year-old Latino man, was diagnosed in 1984. He had moved back to NYC approximately a week before the interview, after living in a rural part of a southern state for eight years. During those eight years, Juan had not received any medical care for his HIV. He had been hospitalized for a week prior to the interview due to an HIV-related stomach infection, as soon as he arrived in NYC. He stated that he chose to move back to New York to begin receiving care and taking ART, and had his first HIV care appointment scheduled the day of the interview. Juan was also dismissive and somewhat frustrated with the topic of “conspiracy beliefs,” which perhaps suggested that such ideas could be destabilizing to his already precarious situation:

I don’t know where [HIV] came from. I just know I got it. Nothing—where am I gonna find out who? It’s not gonna help me any. It’s just gonna stress my mind out. I don’t need that… Why would you wanna know where, how it came from? Could it cure you? Can it get you—can it give you the life—the day and the hours and minutes and seconds that pass by them years ago? Can it get you better? Can’t do nothing for you, man. Whoever invented it or how the hell it came about doesn’t concern me, as long as I stay alive. [Juan]

For Jay, quoted below, these kinds of ideas constituted “negative stuff,” which he tried to “block out.” Jay, a 31-year-old Black man, was diagnosed in 2009. At the time of the interview, he was not on ART and was disengaged from outpatient HIV care. He was interviewed at his bedside while hospitalized for fatigue, shortness of breath, and in his own words, “probably a little pneumonia,” and had been hospitalized for similar reasons twice in the preceding two months. In both the B2C interview and the interview from the study presented here, Jay stated that he “hated talking about” his status, remarking, “I just can’t be cool with it.” He appeared disinterested or perhaps even avoidant when asked about ideas related to the origin or treatment of HIV:

…when I hear [these ideas], I just block everything out. I don’t hear nothing you’re talking about. I stay to myself and I’m gonna always be to myself… That’s about it. I don’t speak to people really. You can talk, I’m not listening to you. I mind my business… I don’t pay attention to the negative stuff. [Jay]

When asked about the possibility that such ideas may be true, Jay responded that he did believe experimentation occurs, but could not invest time and energy thinking about it:

I mean, I do, but I don’t. I think they experiment with a lot of stuff and things happen, and the stuff just starts forming. I can’t be thinking about all that. I got other stuff to think about… [Jay]

For Jay, “staying]” to himself, and not engaging in distracting conversations about “conspiracy beliefs,” was one way that he was able to “mind [his own] business” and not “pay attention to the negative stuff.” Jay did not believe in any particular “conspiracy beliefs,” and seemed to be purposefully dismissive or even avoidant of them.

Janae, a 42-year-old Black woman, was diagnosed in 2003. At the time of the interview, she was attempting to become consistently adherent to her ART while simultaneously trying to work with New York City Housing Authority to improve her extremely stressful housing situation (she described her apartment as “not livin ’ condition, especially for my health”). She reported that she had been consistently taking ART for approximately a month at the time of the interview, after a period of stopping her regimen due to prolonged and severe side effects. When asked if she was familiar with ideas about the human-made origin of HIV or the idea that a cure exists, she responded:

That’s hearsay. I don’t pay attention to it. I just turn the TV, ‘cause you ain’t gonna get my hopes up high… you just gotta keep yourself healthy and keep yourself protected…you gotta do the best thing to do to make you live for yourself, and stop listenin’ to these peoples [about cure rumor]. Make sure—you gotta take care of your body.’…I don’t worry about people. I worry about myself. I can’t worry about what this person have or worried about lookin’ up researches. I don’t do that. I got other issues. I got other problems. [Janae]

The following participant, Jada, a 29-year-old Black woman who was born with HIV, had been repeatedly trying to become adherent to an ART regimen. Like many of the participants in the sample, she had experienced numerous periods of disengagement, which she attributed to her “psychological” barriers to taking pills. Jada adamantly disagreed with “conspiracy beliefs” about HIV, and felt strongly that people need to focus on managing their HIV instead of thinking about “conspiracy belief”-type ideas:

Interviewer: What are some of the things that you’ve heard people talk about, that you think are “preposterous”?

Jada: Dumb!…It being conducted in our, America’s laboratory somewhere, and they decided to just distribute it amongst minorities. I don’t ponder on it…I would like to think that that’s just false. I don’t know. That’s just where I leave it, to the unknown box. I know there are ways to prevent it, keep it from spreading…Why does it matter where it came from now? It’s already here. It’s already done its damage… It’s a lot of hearsay…You can say what you want all day. Sit and talk around this round table all day about the wrongs, and what people say, and why they say it. [Jada]

DISCUSSION

In this sample, participants were in various stages of the re-engagement process, but all had recently experienced a period of being completely disengaged from care. People’s disengagement stemmed from a variety of often interrelated issues, including housing instability, substance use, lack of family support, stigma, or struggling with accepting one’s positive status. At the time of the interview, some individuals had successfully re-engaged and become consistent with their clinic attendance and ART use, but most were still struggling with being out of care or were at the beginning stages of the re-engagement process (e.g., making initial appointments with an HIV care provider). Despite facing myriad life challenges that made managing one’s HIV difficult, participants were largely insistent that “conspiracy beliefs” did not play a role in how they manage their health, regardless of whether they personally endorsed such ideas. Departing from much of the previous literature on this phenomenon [10, 11, 23–25], this study suggests that ambivalence toward or even endorsement of these ideas can coexist with successful engagement in care, or having the motivation to become fully engaged and ART adherent.

As found in other studies [15, 39–41], endorsement of “conspiracy beliefs” was common, particularly beliefs related to the possibility of a cure for HIV being deliberately withheld by the government and/or pharmaceutical industry [38]. For many participants, the discussion of both HIV origin and cure-related ideas elicited a dismissive reaction: “It doesn’t matter where it came from, I have it [HIV].” These dismissive dispositions were interpreted as avoidant, as participants did not focus on whether they believed such ideas, but rather, were quick to express that they were unwilling to invest energy and time to even contemplate the veracity of the ideas, even if they felt they could possibly be true. In this sense, expending time and emotional energy pondering “conspiracy belief”-type ideas was perceived as unproductive and even detrimental to efforts toward focusing on their health and other life challenges. Participants appeared to view time and energy as finite resources that needed to be expended carefully-in most cases, toward improving how they manage their HIV and overall health.

While a dismissive or avoidant attitude may speak to the potentially distressing nature of such beliefs, particularly among those still contending with disengagement, participants were adamant in their choice to prioritize their proximal health concerns. Being avoidant or dismissive – even when acknowledging they may believe that some of the ideas may in fact be true-suggested a realization that contending with these kinds of beliefs could potentially be destabilizing to their life circumstances. These participants were already experiencing uncertainty and instability, for instance, regarding their housing situation or related to their substance use, and described lives particularly insecure and anxiety-provoking. This avoidance could thus be interpreted as signaling powerlessness, but also perhaps resistance to expending emotional energy dwelling on a fundamentally unjust society. This resistance- and resilience-could signify a refusal to allow their health to be further derailed by a fundamentally unjust and unequal society. For these participants, the daily reality of living with few financial and social resources and trying to manage HIV was far more pressing than investing time thinking about the possibly nefarious origins of HIV, or the possibility of a withheld cure.

Importantly, these findings do not suggest that public health and medicine should disregard people’s HIV and health-related beliefs. Structurally, it may be that conceptualizing “conspiracy beliefs” as a cultural barrier to care among racial and ethnic minority people is not useful for understanding health-related mistrust among these populations. Instead of attributing these kinds of ideas as a cultural characteristic of racial and ethnic minority groups, public health can simultaneously endeavor to build trust, and recognize that people are resilient, and want to be healthy and happy despite the mistrust they may feel. For example, the notion that the government was deliberately withholding a cure for HIV, or the idea that the virus that was threatening to devastate their lives was in fact created deliberately to hurt people like them, were often viewed as feasible ones, made realistic by their everyday experiences with racism, classism and pervasive social exclusion. Even so, people expressed a deep desire to get better and take better care of their health, despite the many social forces pitted against them. These social forces included proximal struggles like housing instability, but for many, it also included these disturbing, destabilizing ideas that brought their lived experiences of racism and classism into sharp focus.

Limitations

There are some important limitations to note. While the sample size was slightly modest, thematic saturation was achieved with the completion of 27 in-depth interviews. Moreover, this study is unique in its qualitative examination of such ideas among a sample of participants that were largely inconsistently engaged, or disengaged, at the time of their interviews. Thus, the narratives presented here provide perspectives of those who are often difficult to reach due to inconsistent or prolonged disengagement from the healthcare system. Ultimately, 27 individuals were interviewed, of whom five were located in-patient due to their unavoidable hospitalization. These five participants were interviewed at their hospital bedside and were previously considered to likely be completely lost to follow-up due to out of date or non-working telephone numbers and ongoing missed appointments. In this sense, this sample captures the experience of being currently disengaged from outpatient HIV care, in addition to the experience of inconsistent engagement. However, these findings are not necessarily generalizable to other populations of African American and Latinx people living with HIV. This study was conducted in New York City, where HIV-related services for PLWH are more accessible and visible than in many other parts of the country.

Finally, although “conspiracy beliefs” are often considered socially taboo or controversial, the interviewer took special effort to decrease the likelihood of desirability bias and provide an open, non-judgmental environment. In order to avoid making prejudgments about participants’ beliefs, the interviewer-administered questionnaire did not assess these ideas, which allowed the topic to emerge as naturally and neutrally as possible during the course of qualitative interview. Moreover, the interviewer did not use word “conspiracy” at all during any part of the survey or qualitative interview. In most cases, participants raised the topic themselves, but in the absence of that,_the interviewer used neutral language to ask about ideas regarding the origin of the virus, the efficacy of ART, and the possibility of an existing cure for HIV. These various strategies, in addition to the interviewer’s extensive training on how to elicit sensitive information, encouraged participants to speak candidly and openly about their belief system and their experiences with HIV care.

Recommendations and future research

These findings suggest that public health may not necessarily need to endeavor to dislodge these kinds of beliefs in order to reduce medical mistrust among racial and ethnic minority people. Interventions aiming to improve ART adherence and retention in HIV care should focus on building trust between clinicians and the populations that have experienced both historical and ongoing social and economic marginalization. For example, it is not enough to reinforce the clinical guidelines for proper medication adherence, as traditional ART counseling does not necessarily address people’s beliefs about HIV or HIV medication, particularly in the context of racism, classism, and social exclusion. Providing culturally sensitive health care in a patient centered environment has been shown to improve provider trust, satisfaction with care, and medication adherence [42, 43]. When working with populations that are socially marginalized, visits should include a patient-centered culturally sensitive counseling component. This type of approach reframes the patient-provider relationship from a unidirectional hierarchy to a partnership that focuses on the patient’s unique needs [32, 42]. This model assess patient behavior and beliefs, provides advice about optimal health behaviors, sets realistic goals for achieving and maintaining a behavior, develops a plan to help with adherence, and builds in future follow-up support with the patient [44]. For example, regarding patients’ beliefs in particular, HIV care providers should ask their patients specifically about their beliefs related to HIV medication, which can reveal how to think about the efficacy and safety of ART, as well as provide an opportunity to directly address issues of mistrust or suspicion. Importantly, patient-centered culturally sensitive counseling also allows patients to rank their health concerns by the patient’s perceived urgency as well as help identify other social needs that relate to healthcare but are not traditionally included in the healthcare visit such as nutritional assistance, supportive housing, and legal assistance [45]. Our findings support this recommendation, as the data suggests that people facing myriad challenges to their health and wellbeing prioritize proximal concerns far above more distal ideas that are ultimately out of their control (e.g., whether or not the government created HIV to target minority people).

Further research is needed to better understand how the constellation of barriers to care, including health institution- and provider-related mistrust, work together to impede engagement, and to facilitate retention. It is important to note that medical mistrust, including HIV-related “conspiracy beliefs,” is rooted in ongoing social marginalization and mistreatment, not only infamous historical catastrophes such as the Tuskegee Syphilis Study. Expanding the scope of what medical mistrust may look like, and how it may operate in conjunction with other facets of people’s belief systems, is necessary in order to understand the interplay between mistrust and health behaviors. For example, examining race-based mistrust in the context of beliefs about HIV medication has been shown to influence ART adherence [46, 47]. Moreover, more research is needed that teases out the differences between trust and mistrust [48], and how each may distinctly affect how people adhere to their ART regimens. More broadly, researchers should also endeavor to address medical mistrust among other racial and ethnic minority populations, as well as groups that experience stigmatization, such as gay people, people who are transgender, and people who have substance use disorders.

Finally, it may be useful to move away from the phrase “conspiracy beliefs,” which is commonly used in the public health literature to discuss the ideas related to the origin of HIV and the potential role of the government and/or pharmaceutical industry in creating or prolonging the epidemic. This language potentially risks obscuring or even discrediting the nuances of people’s lived experiences of racism and classism, and by applying this phrase to such a wide and diverse ranges of beliefs, we risk missing opportunities to better understand the thought processes and experiences of the populations with whom we work and serve. Moving forward with more open-ended terms, such HIV-related beliefs, can enable us to be more effective in our efforts to understand these ideas in the context of people’s daily lives, and thus improve people’s experiences along the HIV care continuum.

Table 1:

Participant Socio-Demographics

		N (%)
Gender	Female	16 (59%)
	Male	11 (41%)
Race/Ethnicity	Black Non-Hispanic	21 (78%)
	Hispanic/Latinx	6 (22%)
Housing Situation*	HASA or public assistance (apartment or room)	18 (67%)
	SRO	7 (26%)
	Nursing home or hospice	3 (11%)
	No financial assistance	2 (7%)
	Homeless	8 (30%)
Health Insurance	Medicaid	25 (93%)
	Medicaid + Medicare	2 (7%)
Employment Status	Unemployed	24 (89%)
	Employed full or part time	3 (11%)

Note.

^*Adds up to >100% because some participants considered themselves homeless in addition to the housing category they selected (often a form of temporary housing, e.g., SRO).