Abstract
Perceived discrimination and medical mistrust are contributors to HIV inequities. The current study examined whether medical mistrust mediated the associations between perceived discrimination and adherence to antiretroviral therapy (ART) as well as care engagement in a sample of 304 Black adults living with HIV. Perceived discrimination and medical mistrust were measured using validated scales; ART adherence was electronically monitored for a month; care engagement was determined by medical record data. Results support significant total indirect effects from perceived discrimination (due to HIV-serostatus, race, sexual orientation) to ART adherence through three types of medical mistrust (towards healthcare organizations, one’s physician, and HIV-specific mistrust). The total indirect effects were also significant for care engagement and were largely driven by mistrust towards one’s own physician. Findings suggest interventions at the provider or healthcare organization levels should address medical mistrust to improve the health and well-being of Black Americans living with HIV.
Keywords: perceived discrimination, intersectional stigma, medical mistrust, ART adherence, care engagement
Introduction
Black Americans are disproportionately affected by the HIV epidemic in the United States. In 2018, Black people accounted for 42% of all new HIV diagnoses in the United States; specifically, Black gay and bisexual men had the highest percentage (26%) of new HIV diagnoses compared to other groups (Centers for Disease Control and Prevention, 2020). Black or African Americans also made up the largest percentage (41%) of people living with HIV at the end of 2018 (Centers for Disease Control and Prevention, 2020). Compared to other racial/ethnic groups, they are less likely to receive and stay engaged in HIV care, have pre-exposure prophylaxis (PrEP) for HIV prevention, adhere to antiretroviral treatment, and be virally suppressed (Centers for Disease Control and Prevention, 2020; Lyons, Dailey, Yu, & Johnson, 2021).
A major contributor to the significant HIV-related inequities affecting Black Americans is the experience of discrimination associated with intersectional stigma, which refers to the intersection of devalued social categories (e.g., minority race, sexual minority orientation, HIV-serostatus) at the individual level as a reflection of interlocking systems of privilege and oppression at the structural level (e.g., racism, sexism, heterosexism) (Bowleg, 2012; Turan et al., 2019). The negative impact of discrimination on health has been well-documented (Williams, Lawrence, & Davis, 2019). Specifically, the stress associated with discrimination contributes to the health disparities of racial/ethnic and sexual minorities (Ren, Amick, & Williams, 1999; Thomas, Bardwell, Ancoli-Israel, & Dimsdale, 2006; Williams, Yu, Jackson, & Anderson, 1997), including those living with HIV (Braksmajer, Simmons, Aidala, & McMahon, 2018; Earnshaw, Bogart, Dovidio, & Williams, 2015; Rintamaki, Davis, Skripkauskas, Bennett, & Wolf, 2006). For example, in a sample of 181 HIV-positive Black participants in Los Angeles who experienced greater racial discrimination were more likely to have lower CD4 cell counts, higher HIV viral loads, and any emergency department visits in the past six months (Bogart, Landrine, Galvan, Wagner, & Klein, 2013). Greater emergency department use is indicative of poor health, possibly due to delayed help-seeking and decreased primary care engagement (Bogart et al., 2013).
Medical mistrust is also considered a key contributor to health disparities that Black Americans experience in general and specific to HIV-related outcomes (Bogart, Takada, & Cunningham, 2021; Institute of Medicine Committee on, Eliminating, & Ethnic Disparities in Health, 2003). Medical mistrust refers to the distrust of the healthcare system, providers, and treatments (Hall, Dugan, Zheng, & Mishra, 2001; Omodei & McLennan, 2000). It is considered an active and understandable response to direct or vicarious experiences of discrimination and oppression (Benkert, Cuevas, Thompson, Dove-Meadows, & Knuckles, 2019; Bogart, Takada, et al., 2021). Empirical studies support that perceived racial discrimination both within and outside healthcare is related to medical mistrust among Black Americans (Durant, Legedza, Marcantonio, Freeman, & Landon, 2011; Hammond, 2010; Williamson, Smith, & Bigman, 2019). There is abundant literature on the negative impact of medical mistrust on health behaviors and outcomes and its role in racial health inequities (Institute of Medicine Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care, 2003; Office of Disease Prevention and Health Promotion, 2020; Williamson & Bigman, 2018), including the role of medical mistrust in poor HIV outcomes among racial/ethnic minority people living with HIV (for a review, see Bogart, Takada, et al., 2021). For example, greater physician mistrust was associated with lower readiness for antiretroviral therapy (ART) in a sample of 95 HIV-positive African American and Latinx patients from hospital-based HIV clinics in New York City (Gwadz et al., 2014). In a sample of HIV-positive Black men, general medical mistrust was prospectively associated with lower ART adherence (Dale, Bogart, Wagner, Galvan, & Klein, 2016). In addition, general medical mistrust was associated with lower self-reported engagement in routine health care such as annual physical examination in Black sexual minority men (Eaton et al., 2015). In addition, race-based medical provider mistrust was associated with lower ART adherence in racial/ethnic minority adults (Kalichman et al., 2016), including in Black adults living with HIV (Kalichman, Eaton, Kalichman, & Cherry, 2017).
A few studies have explored whether medical mistrust explains the association between perceived discrimination and poor health outcomes. For example, in a sample of HIV-positive Latinx men, general medical mistrust was found to mediate the associations between two types of perceived discrimination, related to being Latino and being HIV-positive, and self-reported adherence to ART (Galvan, Bogart, Klein, Wagner, & Chen, 2017). This potential mediation path has also been minimally explored in other health conditions. One study reported that racial discrimination was associated with lower self-reported medication adherence in a sample of Black adults with hypertension, and trust in physicians mediated the association (Cuffee et al., 2013). Another study found that general medical mistrust mediated the association between enacted stigma (sexual orientation and race-based) related to health care and engagement with annual physical examination in a sample of Black sexual minority men (Eaton et al., 2015). No prior study has examined the association between perceived discrimination and prospectively and objectively measured medication adherence, either HIV-specific or not, and few studies have extended the association to include other outcomes such as care engagement.
The current study aimed to examine whether medical mistrust mediates the association between perceived discrimination and adherence to ART as well as HIV care engagement in a sample of Black men and women living with HIV. We hypothesized that there would be significant total indirect effects between high perceived discrimination and poor ART adherence (or care engagement) via greater medical mistrust, in the forms of three specific indirect effects: mistrust towards healthcare organizations, physicians, and HIV-specific mistrust beliefs (also known as HIV conspiracy beliefs). HIV-specific medical mistrust (i.e., medical mistrust about the origin, prevention, and treatment of HIV) was added because the sample included all HIV-positive participants and, as with mistrust towards healthcare organizations and physicians, it is robustly associated with health outcomes and behaviors related to HIV prevention, testing, and ART nonadherence in Black individuals (Bogart, Takada, et al., 2021).
The present study was conducted in Los Angeles County, California. As of 2018, there were 58,000 individuals living with HIV/AIDS in Los Angeles County, out of which approximately 20% were Black individuals (Division of HIV and STD Programs Department of Public Health County of Los Angeles, 2020). From 2006 to 2018, Black men and women had the highest rates of HIV diagnoses as well as lowest treatment coverage compared to all other racial/ethnic groups (Division of HIV and STD Programs Department of Public Health County of Los Angeles, 2020). HIV prevalence rates from 2004 to 2017 among Black sexual minority men (36% in 2017) in Los Angeles County were consistently and significantly higher than White (15% in 2017) and Latinx (18%) sexual minority men (Sey & Ma, 2017).
Methods
Participants and Procedures
Data collection for the present analysis was conducted from January 23, 2018 to July 2, 2020 at AIDS Project Los Angeles (APLA) Health, the largest community-based HIV service organization in Los Angeles County. The Community Advisory Board (CAB) at APLA Health met several times a year during the study period to provide input on study design, recruitment, and interpretation of results. The CAB members were clients and staff from APLA Health and other local organizations primarily serving Black people living with HIV.
The current study used baseline data (N = 304) from an ongoing randomized controlled trial of a culturally congruent behavioral intervention to improve ART adherence, retention in care, and viral suppression in Black adults living with HIV. Inclusion criteria for the study were: (1) Black/African American racial/ethnic identity, (2) HIV-positive serostatus, (3) 18 years of age or above, (4) prescribed ART in the past 12 months, (5) self-reported adherence problems (i.e., missed at least one ART dose in the past month) and/or detectable viral load; and (6) willing to use an electronic adherence monitoring device. Institutional review board approval was obtained from the institution’s Human Subjects Protection Committee. All participants gave informed consent and received $30 for the baseline assessment and $30 for a one-month follow-up visit. During the follow-up visit, study staff downloaded electronically monitored adherence data (as described below) and conducted blood draws via venipuncture to assess HIV viral load. Study staff were certified in phlebotomy and conducted venipuncture at the primary care clinic connected to APLA Health.
Measures
Socio-demographic characteristics.
A self-report questionnaire was used to obtain information about participant's age (calculated from date of birth), gender identification (cis or transgender male or cis or transgender female, gender queer/gender nonconforming, or different identity), sexual orientation, education level, housing status in the past year, current employment status, and number of years since HIV diagnosis.
Medication Events Monitoring System (MEMS).
Adherence to ART medication was measured continuously from the baseline assessment time-point to 1-month (30 days) after baseline using MEMS (AARDEX, Inc., Zurich, Switzerland). The electronic drug exposure monitoring cap records the time and date when the medication bottle is opened, and data are automatically saved in the software to produce reports of daily medication-taking patterns. At the 1-month follow-up visit, MEMS data for each participant were downloaded. Participants also completed a questionnaire about how often they 1) opened the bottle without removing a dose, 2) took a dose from another source other than the MEMS bottle, and 3) removed more than one dose at a time from the bottle over the past month. In the current sample, 21% reported using these strategies. Their MEMS data were adjusted accordingly subtracting MEMS dose counts from when they opened the bottle without removing a dose, and adding counts when they took a dose from another source other than the MEMS bottle or removed more than one dose at a time from the bottle based on questionnaire data (Bangsberg, Hecht, Charlebois, Chesney, & Moss, 2001). A continuous adherence measure (percentage of prescribed doses taken in the past month) was derived for the 30-day period between baseline and 1-month follow-up. We also report the percentage with 80% or more adherence. The continuous MEMS adherence measure was used in the analysis. The analytic sample with complete MEMS adherence data includes 230 participants.
HIV viral load was obtained via venipuncture for 196 participants, and self-reported viral load was obtained for 282 participants. MEMS adherence from baseline to 1-month follow-up was significantly associated with the binary variable of undetectable viral load from blood samples at baseline (OR = 6.70, p = 0.009, n = 187), providing support for the validity of the MEMS adherence measure. MEMS adherence from baseline to 1-month follow-up was not significantly associated with self-reported undetectable viral load at baseline (OR = 3.28, p = 0.056, n = 212).
Multiple Discrimination Scale.
Perceived discrimination was measured using experiences with ten different discrimination events in the past year due to being HIV-positive, being Black, and being gay (Bogart et al., 2013). Sample items include: "In the past year, were you ignored, excluded, or avoided by people close to you because you are [HIV positive/Black/gay]?" "In the past year, were you denied a place to live or did you lose a place to live because you are [HIV positive/Black/gay]?", and "In the past year, were you physically assaulted or beaten up because you are [HIV positive/Black/gay]?" For each subscale, a mean score was created, averaging across all ten items. Reliability coefficients (α) for the three subscales in the current study were 0.87 (HIV-positive), 0.91 (Black), and 0.92 (gay).
Medical Mistrust.
Medical mistrust was measured using three subscales to capture mistrust towards health care organization, physician, and HIV-specific mistrust beliefs. The mistrust toward health care organizations subscale (LaVeist, Isaac, & Williams, 2009) includes seven items such as "patients have sometimes been deceived or misled by health care organizations," "health care organizations have sometimes done harmful experiments on patients without their knowledge," and "mistakes are common in health care organizations." Items were rated on a 4-point scale: strongly disagree, disagree, agree, and strongly agree. Reliability coefficient (Cronbach’s α) for this subscale in the current study was 0.81.
The mistrust toward physician subscale includes (Thom, Ribisl, Stewart, Luke, & Physicians, 1999) 11 items such as "I trust my doctor so much I always try to follow his/her advice," "I sometimes distrust my doctor's opinions and would like a second one," and "I feel my doctor does not do everything he/she should about my medical care." Items were also rated on a 5-point scale: totally disagree, disagree, neutral, agree, and strongly agree. Reliability coefficient (α) for this subscale in the current study was 0.89.
The HIV conspiracy beliefs subscale (Bogart & Thorburn, 2005) measures HIV-specific mistrust beliefs and includes nine items such as "HIV is a man-made virus," "People who take antiretroviral medications for HIV are human guinea pigs for the government," and "The medication used to treat HIV causes people to get AIDS." Items were rated on a 5-point scale: strongly disagree, slightly disagree, not sure or have no opinion, slightly agree, and strongly agree. Reliability coefficient (α) for this subscale in the current study was 0.90. For each of these three mistrust subscales, we created a mean score across all items, and items were reverse coded as needed so that a higher score indicates greater mistrust.
HIV Care Engagement.
Care engagement was determined by combining responses to two survey items, “In the last 6 months, how many appointments did you have with an HIV doctor?” and “In the last 6 months, how many appointments with an HIV doctor did you miss without rescheduling?” It is defined as having one or more HIV care visits and less than two missed appointments in the past six months (Rumptz et al., 2007).
Data Analysis
We used Mplus version 8 to conduct path analysis with parallel multiple mediators (Muthén & Muthén, 2017). Analyses were conducted using the full sample. Maximum likelihood (ML) estimation method was used with data assumed missing at random (MAR). While the sample included subgroups (e.g., heterosexual and female participants), we did not perform subgroup analyses due to small subgroup sample sizes. Figure 1 shows an illustration of the model. All variables were observed variables. There were two outcome variables (Y): MEMS-measured ART adherence was modeled as a continuous outcome variable, and care engagement as a binary outcome variable. There were three independent variables tested in separate models (X): perceived discrimination due to each of the three forms of stigma (from HIV-serostatus, race/Black, and sexual orientation). There were three mediators modeled as paralleled indirect paths (M1-3): three specific forms of medical mistrust (mistrust toward one's individual physician, mistrust toward healthcare organizations, and HIV-related mistrust beliefs). Note that the three mediators were allowed to covary, and they exhibit significant but weak correlations (rs = 0.24-0.34, ps < .0001) We tested whether perceived discrimination due to each of the three forms of stigma was related to ART adherence or care engagement through three specific forms of medical mistrust. Specifically, perceived discrimination due to each form of stigma influenced all three forms of medical mistrust (a1, a2, a3), which in turn influenced ART adherence or care engagement (b1, b2, b3). Specific indirect effects through each parallel mediator were estimated as the corresponding product term (a1*b1, a2*b2, a3*b3). Total indirect effects refer to the sum of all specific indirect effects. Direct effects (c’) refer to the effect of each type of perceived discrimination on ART adherence or care engagement while accounting for the parallel medical mistrust mediators. Total effects refer to the sum of the indirect and direct effects. We reported estimates and 95% bootstrapping confidence intervals (obtained from 10,000 replications) of the specific and total indirect effects as well as direct effects and total effects. Because the current analyses focused on mediation or indirect effects (i.e., whether perceived discrimination indirectly affects adherence or care engagement through medical mistrust), we did not test the model with only the direct path from independent to dependent variables. Recent methodological research suggests that mediation effects can be present in the absence of a total effect, hence, it is not a necessary step to first establish a relationship between perceived discrimination and ART adherence or care engagement as part of the mediation test (Hayes, 2017; Kenny & Judd, 2014).
Figure 1.
Conceptual Diagram for the Parallel Mediation Model.
Results
Table 1 presents the sociodemographic characteristics of the sample. The mean age of the sample was 48 years-old. The majority of the sample were men (81%), sexual minority individuals (74%), and not currently working part-time or full-time (84%). The mean time since HIV diagnosis was 17 years. Table 2 presents data related to the sample’s HIV care adherence and retention, as well as reported levels of discrimination and mistrust. Average MEMS adherence from baseline to 1-month follow-up was 74%, and 53% of the sample had at least 80% MEMS adherence during this period. A total of 78% were engaged in health care (i.e., had one or more visits and less than two missed appointments in the past six months).
Table 1.
Characteristics of the Sample of Black Adults Living with HIV (N = 304).
Variable | Obs | n (%) / M (SD, range) |
---|---|---|
Age | 304 | 47.62 (12.46, 18-75) |
Time since HIV diagnosis (years) | 292 | 16.65 (9.72, 0.38-39.22) |
Female | 304 | 57 (18.75%) |
Education | 304 | |
Less than high school | 44 (14.47%) | |
High school diploma or GED | 88 (28.95%) | |
Some college, but no degree | 99 (32.57%) | |
College degree or above | 73 (24.00%) | |
Working full-time or part-time | 303 | 47 (15.51%) |
Unstable housing in the past year | 303 | 157 (51.82%) |
Household income in past 12 months | 303 | |
Currently have no income | 46 (15.38%) | |
$1-$10,000 | 104 (34.78%) | |
$10,000-$20,000 | 116 (38.80%) | |
$20,001-$30,000 | 19 (6.35%) | |
$30,001-$40,000 | 7 (2.34%) | |
Over $40,000 | 7 (2.34%) | |
Relationship status | 303 | |
Married or living with significant other | 33 (10.89%) | |
Single/Divorced/Separated/Widowed | 270 (89.11%) | |
Sexual orientation | 304 | |
Straight or Heterosexual | 80 (26.32%) | |
Gay or homosexual man or same gender loving | 171 (56.25%) | |
Lesbian or homosexual woman | 3 (0.99%) | |
Bisexual | 40 (13.16%) | |
Not sure or in transition | 3 (0.99%) | |
Something else | 7 (2.30%) |
Table 2.
Descriptive Statistics of Multiple Discrimination, Medical Mistrust, MEMS-Measured ART Adherence, and Care Engagement.
Variables | Obs | M | SD | Range |
---|---|---|---|---|
Multiple Discrimination Scale (independent variable) | ||||
MDS scale, HIV-serostatus discrimination | 302 | 1.48 | 2.33 | 0-10 |
MDS scale, Black racial discrimination | 300 | 2.05 | 2.88 | 0-10 |
MDS scale, Gay sexual orientation discrimination | 282 | 1.56 | 2.74 | 0-10 |
Medical Mistrust (mediators) | ||||
Mistrust of health care organizations | 301 | 2.59 | 0.58 | 1-4 |
Mistrust of one’s physician | 303 | 2.11 | 0.73 | 1-4.73 |
Mean agreement with HIV-related mistrust beliefs | 300 | 2.75 | 0.96 | 1-5 |
Outcome variables | ||||
MEMS adherence from baseline to 1 month | 230 | 74% | 24% | 0-100% |
Obs | N | % | ||
80% MEMS adherence from baseline to 1 month | 302 | 121 | 53 | |
Care engagement | 302 | 235 | 78 |
Note. Care engagement is defined as having one or more visits and less than 2 missed appointments in the past 6 months.
As shown in Table 3, for the association between greater perceived discrimination due to HIV-serostatus at baseline and lower 1-month MEMS-measured ART adherence, mediation analysis results show significant total indirect effects (indirect effects −0.006, 95% bootstrapping CI [−0.012, −0.002]) through higher values for the three parallel mistrust mediator variables. Similarly, the total indirect effects were significant for perceived discrimination due to race/ethnicity (indirect effects −0.006, 95% bootstrapping CI [−0.012, −0.002]). For the association between greater perceived discrimination due to sexual orientation and lower adherence, there were only significant direct effects (−0.015, 95% CI [−0.028, −0.001]) but no significant specific nor total indirect effects through medical mistrust mediator variables. Figure 2 shows the path coefficients of two parallel mediation models with perceived discrimination due to HIV-serostatus (2a) and race/ethnicity (2b) as the respective independent variable.
Table 3.
Results from Parallel Mediation Analysis Predicting Electronically Monitored (MEMS) Adherence and HIV Care Engagement with Perceived Discrimination and Medical Mistrust.
Variables | Specific and total indirect effects, direct effects, and total effects |
Estimate | S.E. | 95% bootstrap CI |
---|---|---|---|---|
1-month MEMS ART adherence (continuous outcome) | ||||
Perceived discrimination due to HIV-serostatus | Specific indirect effects through mistrust towards healthcare organizations | −0.002 | 0.002 | −0.007, 0.002 |
Specific indirect effects through mistrust towards one's physician | −0.002 | 0.002 | −0.006, 0.002 | |
Specific indirect effects through HIV-related mistrust beliefs | −0.002 | 0.002 | −0.007, 0.001 | |
Total indirect effects | −0.006 | 0.002 | −0.012, −0.002 | |
Direct effects | −0.017 | 0.009 | −0.033, 0.002 | |
Total effects | −0.023 | 0.008 | −0.038, −0.007 | |
Perceived discrimination due to race (Black) | Specific indirect effects through mistrust towards healthcare organization | −0.002 | 0.002 | −0.007, 0.002 |
Specific indirect effects through mistrust towards one's physician | −0.001 | 0.002 | −0.005, 0.002 | |
Specific indirect effects through HIV-specific mistrust beliefs | −0.003 | 0.002 | −0.006, 0.000 | |
Total indirect effects | −0.006 | 0.003 | −0.012, −0.002 | |
Direct effects | −0.009 | 0.007 | −0.022, 0.005 | |
Total effects | −0.016 | 0.006 | −0.028, −0.003 | |
Perceived discrimination due to sexual orientation | Specific indirect effects through mistrust towards healthcare organization | −0.001 | 0.001 | −0.004, 0.001 |
Specific indirect effects through mistrust towards one's physician | −0.001 | 0.002 | −0.005, 0.002 | |
HIV-related mistrust beliefs | −0.002 | 0.001 | −0.005, 0.000 | |
Total indirect effects | −0.004 | 0.002 | −0.008, 0.000 | |
Direct effects | −0.015 | 0.007 | −0.028, −0.001 | |
Total effects | −0.019 | 0.007 | −0.032, −0.004 | |
Care engagement (binary outcome) | ||||
Perceived discrimination due to HIV-serostatus | Specific indirect effects through mistrust towards healthcare organization | 0.018 | 0.017 | −0.010, 0.062 |
Specific indirect effects through mistrust towards one's physician | −0.047 | 0.022 | −0.110, −0.015 | |
Specific indirect effects through HIV-related mistrust beliefs | −0.030 | 0.018 | −0.074, −0.002 | |
Total indirect effects | −0.060 | 0.026 | −0.116, −0.014 | |
Direct effects | −0.087 | 0.060 | −0.212, 0.023 | |
Total effects | −0.147 | 0.058 | −0.271, −0.041 | |
Perceived discrimination due to race (Black) | Specific indirect effects through mistrust towards healthcare organization | 0.019 | 0.019 | −0.016, 0.059 |
Specific indirect effects through mistrust towards one's physician | −0.047 | 0.020 | −0.094, −0.014 | |
Specific indirect effects through HIV-related mistrust beliefs | −0.025 | 0.016 | −0.060, 0.004 | |
Total indirect effects | −0.053 | 0.026 | −0.108, −0.006 | |
Direct effects | −0.047 | 0.058 | −0.156, 0.074 | |
Total effects | −0.099 | 0.051 | −0.196, 0.005 | |
Perceived discrimination due to sexual orientation | Specific indirect effects through mistrust towards healthcare organization | 0.004 | 0.008 | −0.008, 0.027 |
Specific indirect effects through mistrust towards one's physician | −0.043 | 0.020 | −0.092, −0.012 | |
Specific indirect effects through HIV-related mistrust beliefs | −0.013 | 0.011 | −0.046, 0.000 | |
Total indirect effects | −0.052 | 0.021 | −0.101, −0.018 | |
Direct effects | −0.074 | 0.055 | −0.179, 0.040 | |
Total effects | −0.126 | 0.054 | −0.230, −0.019 |
Note. Significant specific and total indirect effects, direct effects, and total effects are presented in bold. MEMS = medication event monitoring system. Parallel mediators include: 1) mistrust towards healthcare organization, 2) mistrust towards physicians, and 3) HIV-related mistrust beliefs. 95% bootstrap CI = 95% bootstrap confidence interval (10,000 replications).
Figure 2. Parallel Mediation Model for MEMS-Measured ART Adherence.
(2a). Perceived discrimination due to HIV-serostatus and ART adherence
(2b). Perceived discrimination due to race (Black) and ART adherence
Note. Significant paths are shown in bold. Values in parenthesis indicate 95% Bootstrap Confidence Interval.
We also tested the parallel mediation model using HIV care engagement as the outcome variable. Table 3 shows that the total indirect effects through the three mistrust mediator variables were significant for the relationship between greater perceived discrimination due to HIV-serostatus (indirect effects −0.060, 95% CI: [−0.1116, −0.014]), race/ethnicity (−0.053, 95% CI: [−0.108, −0.006]), or sexual orientation (−0.052, 95% CI: [−0.101, −0.018]) and lower care engagement. The specific indirect path through mistrust of one's physician was significant for the associations between perceived discrimination due to each of the three types of discrimination and care engagement. Specifically, higher levels of perceived discrimination due to each of the three types were associated with higher levels of medical mistrust toward one's individual physician, which in turn was associated with lower care engagement. In addition, HIV-specific mistrust beliefs also showed a significant indirect effect between greater perceived discrimination due to HIV-serostatus and poor care engagement. None of the direct effects were significant between perceived discrimination and care engagement. Figure 3 shows an illustration of the parallel mediation model with perceived discrimination due to HIV-serostatus as the independent variable.
Figure 3. Parallel Mediation Model for Care Engagement.
Note. Significant paths are shown in bold. Values in parenthesis indicate 95% Bootstrap Confidence Interval.
Discussion
In a sample of HIV-positive Black adults, who were mostly sexual minority men, we found that medical mistrust explains the association between perceived discrimination and nonadherence to ART, as well as HIV care engagement. Previously, this mediation model had only been tested in a sample of HIV-positive Latino sexual minority men for the outcome of self-reported ART adherence (Galvan et al., 2017). The current study extends prior evidence by examining HIV care engagement as the outcome and using prospectively collected electronically monitored ART adherence, and is among the first to test this mediation model in a sample of HIV-positive Black Americans.
Our results also support strong associations between perceived discrimination due to different intersecting identities (HIV-serostatus, Black/African American race, and minority sexual orientation) and medical mistrust. The results are consistent with other studies suggesting that experiences of discrimination contribute to greater medical mistrust in Black Americans generally and those living with HIV (Hammond, 2010; Hausmann, Kwoh, Hannon, & Ibrahim, 2013; Williamson et al., 2019). Although not examined in the current study, it is important to acknowledge that structural discrimination, such as inequitable policies and practices at the societal level and in healthcare systems specifically, represents another important pathway besides interpersonal discrimination (the focus of the current study) to greater medical mistrust among Black Americans (Bogart, Takada, & Cunningham, 2019).
In prior studies, greater medical mistrust was associated with lower electronically monitored ART adherence in HIV-positive Black men (Bogart, Wagner, Galvan, & Banks, 2010; Dale et al., 2016) and self-reported ART adherence among adults living with HIV (Thrasher, Earp, Golin, & Zimmer, 2008). In the current study, we focused on testing medical mistrust as indirect paths (i.e., perceived discrimination influencing adherence or care engagement outcome through medical mistrust) and did not specifically replicate prior findings of medical mistrust predicting ART adherence tested in separate regression models. In our parallel mediation model, the individual paths from medical mistrust to ART adherence did not reach statistical significance. It is possible that the strong link between medical mistrust and ART adherence was attenuated when perceived discrimination and different types of medical mistrust were simultaneously accounted for in the same model. However, it is important to note that collectively, the total mediation effect from perceived discrimination through three types of medical mistrust was statistically significant for ART adherence.
For the outcome of care engagement, our findings support that the relationship between discrimination and care engagement was explained by different forms of medical mistrust collectively—and specifically driven by mistrust towards one’s physician. This finding is consistent with a prior report that general medical mistrust mediated the association between health care related stigma and time since last physical exam in a sample of Black sexual minority men (Eaton et al., 2015). Our finding suggests that addressing mistrust towards healthcare providers and increasing trust in the provider-patient relationship may help improve care engagement and thereby other clinical outcomes. A number of healthcare provider interventions have been conducted to increase patients' trust in their own provider through increasing providers' cultural competency and empathy for patients (Rolfe, Cash-Gibson, Car, Sheikh, & McKinstry, 2014; Thom, Tirado, Woon, & McBride, 2006; Tulsky et al., 2011). However, these interventions have not specifically addressed medical mistrust and have generally not shown effects on increasing trust, nor are they specifically tailored for HIV care. Interventions at the provider level as well as healthcare organization level are needed to reduce patients' experience of discrimination within healthcare settings and increase providers' ability to acknowledge and address medical mistrust in a sensitive manner, thereby improving patients' health-related outcomes such as medication adherence, care engagement, and clinical outcomes.
Several limitations should be noted. First, the study used a convenience sample of participants from an ongoing clinical trial. The sample was characterized by multiple social-economic disadvantages, such as unemployment, unstable housing, and low income and education attainment. Hence, the results of the current study may not be generalizable to all Black adults living with HIV in the U.S. Second, indirect effects reported in the current study were small. Although observed indirect effects are often small in social and behavioral science data for a variety of reasons, including using longitudinal design and specifying multiple mediators (Walters, 2018), it is important to consider additional explanatory variables (e.g., psychological and physiological stress responses) that are not examined in the current study and explore alternative ways to examine the meaningfulness of the indirect effects (Walters, 2018). In addition, while ART adherence was prospectively measured, care engagement was assessed at the same time as measures of perceived discrimination and medical mistrust. Therefore, for the models with care engagement as the outcome variable, results were based on cross-sectional data, which precludes any inferences regarding the direction of the associations. Future studies should replicate our findings using care engagement measured longitudinally. Finally, due to small sample sizes of female participants as well as heterosexual participants, we did not perform subgroup analyses or test for statistical interactions by gender identity or sexual orientation. Future studies should examine whether our results, based on a sample with mostly Black sexual minority men, will hold in samples with other intersectional identities.
In sum, the current study provides evidence supporting three forms of medical mistrust (towards healthcare organization, towards one's physician, around the origin and treatment of HIV), either collectively or individually, explained the relationship between perceived discrimination and two outcomes: ART adherence and care engagement. Our results held for each type of perceived discrimination examined, including perceived discrimination due to HIV-serostatus, race, sexual orientation.
Our findings suggest that medical mistrust might be an intervention target, particularly at the provider and healthcare organization levels, to improve the health and well-being of Black people living with HIV and reduce HIV-related inequities in this population. Interventions could be developed to train healthcare providers to acknowledge systematic inequity and structural racism as root causes of mistrust in a non-judgmental, non-confrontational, genuine, and empathetic manner. Such intervention strategies have been used by peer counselors to improve adherence at the patient level for people living with HIV (Bogart et al., 2017; Wagner et al., 2016). In particular, future research will need to develop and evaluate interventions to increase the trustworthiness of healthcare providers and healthcare organizations, for example, by investing in authentic and long-term community engagement efforts to build community partnerships (Bogart, Dong, et al., 2021).
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