The Role of Stigma and Medical Mistrust in the Routine Health Care Engagement of Black Men Who Have Sex With Men

Abstract

Objectives. We assessed how health care–related stigma, global medical mistrust, and personal trust in one’s health care provider relate to engaging in medical care among Black men who have sex with men (MSM).

Methods. In 2012, we surveyed 544 Black MSM attending a community event. We completed generalized linear modeling and mediation analyses in 2013.

Results. Twenty-nine percent of participants reported experiencing racial and sexual orientation stigma from heath care providers and 48% reported mistrust of medical establishments. We found that, among HIV-negative Black MSM, those who experienced greater stigma and global medical mistrust had longer gaps in time since their last medical exam. Furthermore, global medical mistrust mediated the relationship between stigma and engagement in care. Among HIV-positive Black MSM, experiencing stigma from health care providers was associated with longer gaps in time since last HIV care appointment.

Conclusions. Interventions focusing on health care settings that support the development of greater awareness of stigma and mistrust are urgently needed. Failure to address psychosocial deterrents will stymie progress in biomedical prevention and cripple the ability to implement effective prevention and treatment strategies.

The HIV epidemic is one of the most critical public health issues facing the United States today. Although HIV infections are documented among all racial/ethnic and sexual risk groups, Black men who have sex with men (Black MSM) are the most affected by HIV in the United States.¹ Forty-four percent of new HIV infections are among Blacks, and the rate of HIV infection among this group is 7.9 times higher than is the rate of HIV infections among Whites. Black MSM, in particular, are diagnosed with HIV at a rate 6.0 times higher than that of White MSM, and they are 3.8 times more likely to be living with HIV than are White MSM.² The remarkable HIV-related race/ethnicity and sexual orientation disparities observed among Black MSM require urgent attention.

Although surveillance regarding HIV infection highlights increases in HIV transmission among Black MSM, in particular young Black MSM, there is considerable promise in emerging and available HIV prevention and treatment options (e.g., microbicides,³ preexposure prophylaxis,⁴ and treatment as prevention⁵). However, these approaches to HIV prevention require engagement in routine medical care and HIV treatment–related care. The use of biomedical technologies in preventing the spread of HIV will fail if those in need are not connected to care that can facilitate access to and monitor the use of these strategies.^6,7

Within the current HIV prevention and treatment health care landscape, it is well understood that HIV-positive Black MSM who are without engagement in care suffer worse morbidities and greater mortality than do those in care and that overall rates of engagement in care must be improved.^8–10 Likewise, we know very little about the routine health care of HIV-negative Black MSM.^11,12 Limited previous research has found that Black MSM describe their experiences of engaging in health care as fragmented and their health care services offered as subpar.¹³ The inadequate screening and treatment of sexually transmitted infection and HIV are observed even for routine sexually transmitted infection and HIV care among HIV-negative Black MSM.¹⁴ Consequently, failure to engage HIV-negative Black MSM in care results in missed opportunities to provide them with prevention options.

Theoretically, there are multiple factors to consider when examining the limited retention to care that we observe among Black MSM.^15–18 Notably, being uninsured or underinsured, limitations because of location and transportation, and lack of available qualified health professionals are factors directly related to access.¹⁹ However, psychosocial deterrents to care are equally important and impede health care access as well.^20–23 For instance, stigma, described as the social devaluation or discrediting associated with a specific characteristic or attribute,²⁴ and trust in health care providers and medical establishments are linked to health care behaviors.²⁵ We focused on these psychosocial factors.

Research in the area of psychosocial-related deterrents to seeking health care has highlighted the need to better understand the role of stigma in health care access^26–28—in particular, the role of enacted stigma (or experiences of discrimination) in health care settings. Institutions that are mandated to protect the well-being of Black MSM are in many instances perceived as threatening to them as a result of experiencing health care provider sexual-orientation and HIV-status discrimination.^29,30 Furthermore, in a review of stigma and the HIV epidemic, Mahajan et al. highlight the lack of data on measuring the effects of overlapping stigmas (in the case of Black MSM, being part of a racial and sexual orientation minority) on accessing health care.²⁵ Not only can stigma undermine access to care, but it is also associated with longer breaks in care among those who have been linked.^6,9,10 Therefore, previous research warrants an assessment of the extent to which Black MSM experience enacted stigmas and how these experiences are related to accessing medical care.

Medical mistrust among Black adults has also been identified as a barrier to engaging in routine health care. Beliefs regarding mistrust in the treatment of HIV in particular are especially damaging to clinicians’ abilities to engage those in need of care.^31,32 Trust in health care providers has been directly linked to health outcomes such as antiretroviral adherence and good mental health.³² However, few studies have investigated the role of medical mistrust among MSM, and limited data on Black MSM exist on this topic.³³ The available literature generally presents 2 focus assessments when assessing medical mistrust: (1) a system focus assessment, that is, general trust in medical establishments; and (2) an individual focus assessment, that is, trust in a provider’s ability to offer adequate care.^34–37 These concepts are thought to affect one’s likelihood of seeking out (system focus) and staying in (individual focus) care. However, research on these areas is limited and exploratory in nature.

We sought to understand how experiences of health care–enacted stigma relate to accessing routine medical care among HIV-negative and HIV-positive Black MSM attending a community event in Atlanta, Georgia. Furthermore, we examined the association of this relationship with global medical mistrust and personal trust in one’s health care provider. We hypothesized that experiences of enacted health care stigma would predict routine care and that this relationship would be mediated by perceptions of medical mistrust among HIV-positive and -negative Black MSM.

METHODS

We collected surveys using venue intercept procedures.^38–40 Briefly, we asked potential participants to complete a survey as they walked through the display area of a Black gay pride community festival in Atlanta. The festival was located in a large urban green space that allowed potential participants to walk through the space without disclosing their sexual orientation by virtue of being present at the event. We told participants that the survey was about health-related beliefs and behaviors, contained personal questions, was anonymous, and would take 15 minutes to complete. During participant engagement, staff stressed that information collected could not be linked to identifying information and that additional study opportunities did not depend on answers provided in the survey. Participants were offered $7 for completing the survey. Approximately 80% of men approached agreed to complete a survey.

Measures

Surveys included measures of demographic information, including HIV status; health care access; engagement in routine health care; health care–related stigma; global medical mistrust; and trust in health care provider.

Demographic characteristics.

We asked participants their age; their years of education; their income; their employment status; their ethnicity; their zip code of residence; if they identified as gay, bisexual, or heterosexual; if they were closeted about their sexual orientation; and their HIV status.

Health care access.

We asked participants whether they had health care insurance (self-pay vs private or government coverage), whether there was a time in the past 2 years they went without health care insurance (yes or no), and whether they had a medical provider who they could talk with about sexual health (yes or no).

Engagement in routine health care.

We used a gaps in care approach,⁴¹ which included asking participants the last time they had a routine physical examination, a dental examination, and an eye examination conducted by a doctor or other health professional. Responses included past 6 months, past year, past 2 years, past 5 years, and more than 5 years ago. In addition, we asked HIV-positive Black MSM when their last HIV care appointment occurred. Responses included past 3 months, past 6 months, past year, more than a year, and never. For our generalized linear and mediation models, we used last physical examination only as our outcome variable for HIV-negative Black MSM, as this variable is most consistent with the type of care appointment needed to deliver and monitor the use of biomedical HIV prevention interventions.

Health care–related sexual orientation– and race-based stigma.

We asked participants to answer 6 questions about experiences with enacted stigma related to health care.⁴² Three items focused specifically on sexual orientation (Cronbach α = 0.84), for example, “I have been mistreated by health care providers because of my sexual orientation,” and we repeated these 3 items for race (Cronbach α = 0.90), for example, “I have been ignored by health care providers because of my race.” Participant responses were on a scale of 1 to 4 and ranged from strongly disagree to strongly agree.

Global medical mistrust.

We asked participants to answer items concerning global medical mistrust, which we adapted from the Medical Mistrust Index.⁴³ This scale contained 3 items, for example, “Health care providers have sometimes done harmful things to patients without their knowledge.” Participant responses were on a scale of 1 to 4 and ranged from strongly disagree to strongly agree (Cronbach α = 0.74).

Trust in health care provider.

We asked participants to answer 3 items concerning trust in health care providers,⁴³ for example, “I trust health care providers are giving me the best available treatment.” Participant responses were on a scale of 1 to 4 and ranged from strongly disagree to strongly agree (Cronbach α = 0.82).

Data Analysis

Participants were 699 men or transgender women surveyed at a Black gay pride festival in August 2012. Criteria for study participation were being aged at least 18 years, identifying as a male or transgender women, and consenting to study procedures. We excluded 140 participants because of reporting heterosexual identity and no male sex partners (we collected surveys at a public park, which led to heterosexual men participating in survey collection), 6 for reporting race other than Black or African American (we included men of mixed race in analyses), and 9 for incomplete engagement in care data. Remaining analyses included 544 Black MSM, of whom 157 were HIV positive and 387 were HIV negative. Nineteen men reported that their HIV status was unsure; in sensitivity analyses we compared these men with those reporting HIV-negative status. We did not observe any significant differences in findings and, thus, we included these men with HIV-negative men. We have provided descriptive data including means and SDs or numbers and percentages for all variables. Scale items are presented in Table 1 using numbers and percentages to facilitate interpretation.

TABLE 1—

Demographic and Health Care Characteristics Among HIV-Negative and HIV-Positive Black MSM: Atlanta, GA, 2012

Characteristic	HIV-Negative Black MSM (n = 387), No. (%) or Mean ±SD	HIV-Positive Black MSM (n = 157), No. (%) or Mean ±SD	t or χ2
Age, y	35.21 ±11.41	39.88 ±10.67	t = 4.35***
Education, y	13.79 ±2.26	13.88 ±2.06	t = 0.41
Income, $			9.19
0–15 999	107 (28)	56 (37)
16 000–30 999	106 (28)	37 (24)
31 000–45 999	74 (20)	35 (23)
46 000–60 000	42 (11)	14 (9)
> 60 000	45 (12)	11 (7)
Sexual orientation			2.59
Same gender loving or bisexual	347 (90)	147 (94)
Heterosexuala	39 (10)	9 (6)
Not out about sexual orientation	17 (11)	50 (13)
Employed	230 (61)	78 (51)	42.35*
Went without health care insurance sometime in the past 2 y	172 (45)	67 (44)	0.16
Talked with a doctor or nurse about having sex with men in the past 6 mo	158 (41)	102 (66)	26.15***
Last time had a physical examination by a doctor or other health professional			23.58***
Past 6 mo	209 (54)	116 (75)
Past y	96 (25)	25 (16)
Past 2 y	39 (10)	9 (6)
Past 5 y	24 (6)	1 (1)
> 5 y	18 (5)	3 (2)
Last had a dental examination			7.66
Past 6 mo	164 (43)	80 (52)
Past y	82 (21)	36 (23)
Past 2 y	59 (15)	19 (12)
Past 5 y	41 (11)	12 (8)
> 5 y	38 (10)	7 (5)
Last had an eye examination			13.32*
Past 6 mo	121 (32)	62 (40)
Past y	123 (32)	46 (30)
Past 2 y	61 (16)	32 (21)
Past 5 y	41 (11)	10 (7)
> 5 y	37 (10)	4 (3)
Last appointment with HIV care provider
Past 3 mo	. . .	99 (63)
Past 6 mo	. . .	28 (18)
Past y	. . .	9 (6)
> 1 y ago	. . .	4 (3)
Never	. . .	17 (11)

Note. MSM = men who have sex with men.

^aWe included heterosexual men only if they reported male sex partners.

*P < .05; ***P < .001.

We performed the χ² test and t test for identifying group differences between men who report HIV-negative and those who report HIV-positive status. We used generalized linear modeling to conduct bivariate analyses to assess the relationships between health care stigma, global medical mistrust, and trust in health care provider as independent variables and time since last physical examination (for HIV-negative Black MSM) or time since last HIV care appointment (for HIV-positive Black MSM) as dependent variables. We conducted these models to establish whether stigma, medical mistrust, or personal trust in one’s provider were associated with time elapsed since last health care appointment. Analyses controlled for age, income, and employment status. For our mediation analysis we used the analytical framework of ordinary least squares for estimating direct and indirect effects. We applied bootstrapping methods to estimate confidence intervals (CIs). We used bias-corrected CIs and 5000 bootstrap samples. We followed mediator model steps using procedures outlined by Preacher and Hayes⁴⁴ and Baron and Kenny.⁴⁵ We completed data analyses in 2013. Less than 5% of data was missing for any given variable. For all analyses, we used a P level of less than .05 to define statistical significance. We used PASW Statistics, version 18.0 (SPSS Inc., IBM, Somers, NY) for all analyses.

RESULTS

On average, HIV-positive participants (mean = 39.88; SD = 10.67) were older than were HIV-negative participants (mean = 35.21; SD = 11.41). Both groups reported similar levels of education (mean = 13.80; SD = 2.20, corresponding to some college) and income (58% made < $30 000 annually). A large majority of men reported their sexual orientation as gay or bisexual (91%). More than half of the men were employed (58%), and about a third (36%) resided outside the Atlanta metro area (Table 1).

HIV-positive men were more likely to report having some form of health care insurance than were HIV-negative men (81% vs 68%; χ² = 9.70; P < .01), yet health care insurance coverage from the past 2 years was similar for both groups (44% went without insurance in this time frame; Table 1). HIV-positive men were more likely to have talked with a medical provider about sexual health in the past 6 months than were HIV-negative men (66% vs 41%; χ² = 26.15; P < .001). With regard to engagement with routine health care, HIV-positive participants reported greater engagement overall. Ninety-one percent of HIV-positive Black MSM and 79% of HIV-negative Black MSM reported having had a routine medical examination in the past year. Sixty-nine percent of Black MSM reported having had a dental examination in the past year. HIV-positive participants were more likely to report having had an eye examination in the past year (70% vs 64%; χ² = 13.32; P < .05). Sixty-nine percent of HIV-positive Black MSM reported seeing a provider for HIV care in the past 3 months. Eleven percent reported seeing their HIV care provider in the past year or longer ago.

HIV-positive and HIV-negative Black MSM reported similar rates of experiencing stigma from health care providers that they attributed to their sexual orientation or race (Table 2). Reporting that their “health care isn’t as good as others’ because of my race” (15%) and reporting having been “mistreated by health care providers because of my sexual orientation” (15%) were most commonly reported.

TABLE 2—

Experiences of Stigma, Medical Mistrust, and Trust in Health Care Providers Among Black MSM: Atlanta, GA, 2012

Statement	HIV-Negative Black MSM (n = 387), No. (%)	HIV-Positive Black MSM (n = 157), No. (%)	χ2
Experiences of health care–related stigma
I have been mistreated by health care providers because of my sexual orientation.	48 (13)	24 (16)	0.83
I have been ignored by health care providers because of my sexual orientation.	43 (11)	18 (12)	0.01
My health care isn’t as good as others’ because of my sexual orientation.	45 (12)	20 (13)	0.15
I have been mistreated by health care providers because of my race.	46 (12)	19 (12)	0.01
I have been ignored by health care providers because of my race.	41 (11)	22 (14)	1.23
My health care isn’t as good as others’ because of my race.	58 (15)	22 (14)	0.06
I have had at least 1 instance of health care stigma.	102 (31)	282 (27)	1.07
Global medical mistrust
Patients have sometimes been deceived or misled by health care providers.	163 (42)	55 (36)	2.22
When health care providers make mistakes they usually cover it up.	192 (51)	63 (42)	3.56
Health care providers have sometimes done harmful things to patients without their knowledge.	186 (49)	73 (48)	0.04
Personal trust in health care provider
I trust that health care providers are giving me the best treatment available.	232 (61)	98 (63)	0.29
I trust that health care providers have my best interest in mind when treating me.	245 (65)	95 (62)	0.40
I trust that health care providers will tell me if a mistake is made about my medical treatment.	205 (54)	87 (57)	0.56

Note. MSM = men who have sex with men.

As for health care–related stigma, we observed no differences between HIV-negative and HIV-positive Black MSM with regard to global medical mistrust or personal trust in one’s health care provider. However, we did observe high rates of endorsing medical mistrust, and a substantial minority of participants lacked trust in their primary care provider. Forty percent of participants reported that patients have been deceived by health care providers, 47% reported that health care providers cover up mistakes, and 48% reported that health care providers have done harmful things without their patients’ knowledge. Sixty percent of participants trusted that their provider was giving them the best care, 63% trusted that their provider had their best interests in mind, and 55% trusted that their provider would tell them if a mistake was made in their medical treatment (Table 2).

In our bivariate generalized linear models we found that both health care–related stigma and global medical mistrust, but not trust in provider, were significantly associated with greater time passed since last physical examination among HIV-negative Black MSM (Table 3). Moreover, health care–related stigma was also associated with greater time passed since last HIV care appointment for HIV-positive Black MSM. To better understand the relationships between the significant predictors in models focusing on HIV-negative Black MSM, we used a mediation model that specified health care–related stigma as the independent variable, global medical mistrust as the mediator, and time since last physical as the dependent variable (Figure 1). We found that the relationship between experiencing health care–related stigma and time since last physical was fully mediated by global medical mistrust when controlling for relevant demographic variables; that is, when global medical mistrust is added to the model the direct relationship is no longer significant and the indirect path is significant. These outcomes suggest that the relationship between stigma and time since last physical is affected by the degree to which one perceives medical mistrust. For HIV-positive Black MSM, only the direct path was significant (stigma to time since last examination with HIV care provider); therefore, we did not continue with mediation analyses.

TABLE 3—

Bivariate Models Examining Associations Between Psychosocial Barriers and Time Since Last Physical Examination (HIV-Negative Black MSM) or Time Since Last HIV Care Provider Examination (HIV-Positive Black MSM): Atlanta, GA, 2012

Variable	HIV-Negative Black MSM (n = 387) Time Since Last Physical Examination, AOR (95% CI)	HIV-Positive Black MSM (n = 157) Time Since Last HIV Care Appointment, AOR (95% CI)
Experiences of health care–related stigma	1.20* (1.01, 1.43)	1.35** (1.10, 1.66)
Global medical mistrust	1.19* (1.04, 1.37)	1.11 (0.92, 1.32)
Personal trust in health care provider	1.06 (0.94, 1.21)	0.87 (0.74, 1.01)

Note. AOR = adjusted odds ratio; CI = confidence interval; MSM = men who have sex with men. All models controlled for age, income, and employment status (dichotomous yes or no).

*P < .05; **P < .01.

FIGURE 1—

Mediation analysis investigating the relationship between health care stigma, global medical mistrust, and time since last physical examination among HIV-negative Black MSM: Atlanta, GA, 2012.

Note. MSM = men who have sex with men. Total indirect effect = 0.05 (95% confidence interval = 0.01, 0.11.

*P < .05; ***P < .001.

DISCUSSION

Our results shed light on psychosocial factors related to routine care among Black MSM. Experiencing stigma from health care providers is associated with longer elapsed time since last examination for both HIV-negative and HIV-positive Black MSM. Additionally, the mediation model suggests that perceiving greater levels of global medical mistrust among HIV-negative Black MSM drives this relationship.

For HIV-negative Black MSM, global medical mistrust was associated with time since last physical, but personal trust in health care provider was not. The distinction between global medical mistrust and personal trust in provider is likely important to consider when investigating engagement in routine care.¹³ It is unknown exactly why personal trust in health care provider is not related to attending routine care appointments when global medical mistrust is related. It is possible that having found a provider who one trusts negates the impact of prior negative experiences with health care providers in general—an important consideration for potential intervention development.^23,46 Similarly, although stigma predicted time elapsed since last examination for HIV-positive Black MSM, global mistrust and personal trust in provider did not. Findings regarding stigma are mostly consistent with prior work⁴⁷ but do contrast with that of Irvin et al., who identified a positive relationship between perceived discrimination and health care utilization.⁴⁸ Medical mistrust and personal trust in provider were not associated with time elapsed since last examination for HIV-positive Black MSM. Perceiving that one has been stigmatized by health care providers may have a more profound effect on returning to care than do medical mistrust and personal trust in provider because of the layering or compounding effect of experiencing multiple stigmas that HIV-positive Black MSM potentially face.⁴⁹

In regard to the overall rates of stigma, medical mistrust, and personal trust in provider, we observed varying rates of each construct (high rates of mistrust and relatively lower rates of stigma) yet similar rates across HIV status. We had, however, anticipated that a greater number of HIV-positive Black MSM would report these experiences because of their more frequent health care interactions and their diagnosis with a stigmatized health condition.⁵⁰ One possible explanation is that experiences of stigma and medical mistrust may be less likely to occur with HIV care specialists as opposed to primary care providers; provider characteristics are likely an important area to consider in intervention development.

Both HIV-positive and HIV-negative Black MSM experience an intersection of stigmatized identities; therefore, understanding these processes⁴⁹ and Black MSM’s experiences with these identities as they enter into care are critical. Likewise, and comparable with other studies on stigma and medical mistrust,⁵¹ our results indicate the need for interventions that target the development of constructive and positive patient–doctor relationships. However, there is limited previous work in the area of creating interventions to decrease stigma and improve patient trust in medical providers that target health care settings.^52–54 Interventions that focus on providers and specifically address these factors could remove barriers to care. There is some precedent for this type of intervention demonstrating a positive effect, yet these programs of research have not been carried out with Black MSM.^52–54 Focusing on improvements to health care settings, including shared medical decision-making, familiarizing patients with the clinic they are attending, and meeting with health educators to create a personalized medical plan, have been found to benefit patients’ trust in medical care and, therefore, may offer important avenues for intervention.⁵⁵

A minority of participants had talked with their provider about sexual health in the past 6 months.⁵⁶ The lack of communication likely signifies the need for implementing standards for collecting sexual health information. Although training in sexual health for medical providers has largely been underemphasized, there is currently movement to remedy this gap.^11,57–60 Future research should focus on identifying effective methods for training providers in comprehensive sexual health assessments.

Limitations

We conducted this study using a convenience sample of men attending a gay pride event in a southeastern US city. We used a brief assessment of time since last physical examination. This measure is limited in that it assesses only the most recent examination and it does not capture quality and type of care received or overall health of participant. A more in-depth assessment of care received is needed in future studies. This approach, however, did allow us to collect data with populations who are not typically included in engagement in care studies; that is, 11% of HIV-positive Black MSM had never gone to care, and 11% of HIV-negative Black MSM had not seen a provider in at least 2 years.

The psychosocial measures we used have not been validated with this specific population, and caution is suggested when interpreting responses. We also used a cross-sectional survey method, precluding any inferences of causation regarding stigma, mistrust, and engagement in care. Our survey method relied on self-report of HIV status and other potentially stigmatizing factors that may be underreported. Research using more sensitive methods, such as in-depth interviewing techniques, is required to confirm our findings.

Conclusions

It is essential that we rectify the disconnection between the need to engage Black MSM in routine care and implementing the steps necessary to bring this goal to fruition. One promising area in need of further attention is health care settings where we can address factors that patients find stigmatizing or that engender feelings of mistrust. This process should include focusing on environmental factors (e.g., advertising, clinic locations, provision of appropriate care), staff and provider interactions (e.g., competency in care appropriate for Black MSM at all personnel levels), and prior participant health care experiences. Currently, our ability to develop new strategies for ending the HIV epidemic is outpacing our ability to implement these strategies. However, with a greater understanding of the climate of medical care, including greater emphasis on psychosocial barriers, and with improved guidelines for routine care among Black MSM, we can make important steps in reducing health disparities and bridging the gap between medical advances and community uptake.