Medical mistrust is linked to discrimination, poor care engagement, and low adherence among Black adults in the US

Perceived discrimination due to race, HIV status and sexual orientation combined with mistrust of healthcare organisations, physicians and HIV information were found to be negatively associated with adherence to HIV treatment and engagement in care among Black adults in the US. According to the study by Dr Lu Dong of the RAND Corporation and colleagues, recently published in the Journal of Behavioral Medicine, healthcare providers and organisations need to address medical mistrust to improve the health and well-being of Black Americans living with HIV.

According to the Centers for Disease Control and Prevention (CDC), 42% of new HIV infections in 2019 in the US were among Black Americans. However, compared to other races and ethnicities, Black Americans are less like to receive and stay in HIV care, adhere to antiretrovirals, and be virally suppressed. Studies show that one of the reasons for these HIV-specific inequities is the intersectional stigma associated with structural discrimination based on race, gender, sexual orientation, and HIV status.

The researchers collected data from 304 Black Americans living with HIV from Los Angeles County, who were also participants of an ongoing randomised control trial. The data collected between 2018 and 2020 was analysed to examine the mediating role of medical mistrust between discrimination and HIV care engagement, and between discrimination and treatment adherence.

Participants were asked to fill out a questionnaire measuring medical mistrust and experiences of discrimination. Medical mistrust was measured in three categories. Mistrust towards health organisations was measured by their level of agreement with seven statements such as “patients have sometimes been deceived or misled by health care organizations” and "mistakes are common in health care organizations”. Mistrust towards one’s physician was measured with eleven items such as “I trust my doctor so much I always try to follow his/her advice" and “I sometimes distrust my doctor’s opinions and would like a second one”. Mistrust in HIV-specific information was measured with the HIV conspiracy beliefs subscale consisting of statements like "HIV is a man-made virus" and "The medication used to treat HIV causes people to get AIDS."

Perceived discrimination was measured based on experiencing ten different events due to three types of stigma: being Black, living with HIV and being gay. Treatment adherence was measured using a Medications Event Monitoring System (MEMS), which collects the time and date of the medication bottle being opened for a month. Lastly, being engaged in HIV care was defined as having one or more visits and no more than one missed appointment in the past six months.

The majority of the participants (81%) were men; 89% were single; 56% identified as gay, 26% as heterosexual, and 13% as bisexual. Average time since HIV diagnosis was 16 years. Only 16% of participants reported working full-time or part-time, and 52% said they had had unstable housing in the last 12 months.

Participants reported experiencing the most discrimination due to being Black, followed by sexual orientation and HIV status. Mistrust towards health organisations was rated higher among participants than mistrust towards HIV-specific information and one’s physician.

In their first analysis, the researchers found that each type of discrimination was significantly associated with each type of medical mistrust.

Then they examined the relationships between discrimination, mistrust and engagement in care. Each type of discrimination was found to be associated with poor engagement in care, and in each case this was mediated through medical mistrust (a combined measure of the three types). Therefore, the researchers suggest that interventions targeting all three types of medical mistrust may increase engagement in care.

Each type of discrimination was also associated with poor engagement in care, mediated through mistrust towards one’s physician.  This indicates that mistrust towards a physician may influence and determine the effects of perceived discrimination on engagement in care. In addition, discrimination due to HIV status was associated with poor engagement in care, mediated through mistrust towards HIV information. This suggests that experiences of discrimination due to HIV status may increase mistrust towards HIV information and reduce care engagement in turn.

Similar analyses were done for adherence. Each type of discrimination was associated with poor adherence, again mediated through the three types of medical mistrust. In addition, perceived discrimination due to sexual orientation was also directly associated with poor adherence.

Although there has been a number of interventions aiming to increase the trust in physicians by increasing providers’ cultural competency and empathy, researchers note that “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.”

They conclude: “Interventions at the provider level as well as healthcare organisation 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.”