Medical mistrust grounded in structural and systemic racism affects HIV care for Black women in the US South

For Black women in the southern United States, mistrust of the health care system that is grounded in structural and systemic racism is a key factor affecting participation in HIV prevention and treatment services, reports a study in the September/October issue of The Journal of the Association of Nurses in AIDS Care (JANAC).

"[Our] results indicate that there are barriers to the utilization of health services that are grounded in personal experiences, historical mistrust for the health care system and systemic racism," according to the qualitative study by Schenita D. Randolph, Ph.D., MPH, of Duke University School of Nursing and colleagues. "HIV programs serving Black women should include conversations around structural racism and trust for both providers and patients."

"Dr. Randolph's findings are critical because they demonstrate women's own views of the critical and sometimes subtle ways in which systemic racism can have dramatic effects on African-American women's health through multiple pathways," said Dr. Carol Golin, Professor of Medicine and Public Health at the University of North Carolina at Chapel Hill. "This suggests that working to dismantle racism is a fundamental step that is needed to fully address health disparities." Dr. Golin was Principal Investigator of the community-based parent study in which the data were collected.

New Insights on Obstacles to Black Women's Participation in HIV Care

Disparities in HIV risk are an important public health issue for Black women, particularly in the South. "Black women have nearly 20 times the risk of white women in being infected with HIV, and lifetime HIV risk is greatest for people living in the southern United States," according to the authors.

In a previous study, authors identified Black women's perceptions of structural racism and discrimination, and medical mistrust, as critical factors in the development of HIV prevention programs and interventions. The new study further explored those perspectives through a series of focus groups with African-American women living in low-income housing communities in one small city in the South.

Although they did not use those exact terms, the participants consistently communicated that the concepts of structural racism and discrimination, and medical mistrust, had a significant impact on their health care decisions and participation. From the focus group discussions, four subthemes emerged:

• Decreased trust in health care advice and instructions. Based on their experiences, some of the women perceived that health care professionals give incomplete or even false medical information to Black patients. They also viewed some medical facilities as being more trustworthy or more receptive to Black patients than others.
• Systems and structures placing Black women at a disadvantage. "Institutional and systematic regulations"—especially policies related to living in low-income housing—contributed to mistrust of the health care system. Participants perceived that that the combination of being Black and being a woman added "a layer of challenges" to accessing health care. The women felt there were "little to no resources in the community to access affordable health care."
• Lack of effective communication. The women reported experiences with lack of communication in the health care system, including misinformation and not receiving details of the care being given. Some women did report effective communication with providers—showing that taking time to build good communication and relationships can lead to improved health behaviors.
• Need for empowerment in clinical encounters. Perceived racial bias in dealings with health care providers motivated the women to be more assertive in advocating for their rights. They felt they should be able to question health care recommendations and demand more information from providers.

"These findings support the importance for health care providers, as well as researchers, to be aware of systematic racism and structural discrimination that may be overt or covert in our health care systems," Dr. Randolph and coauthors write. They note that the focus group participants voiced a strong preference for HIV-related messaging and programming to be delivered by "trusted individuals or gatekeepers" in the community, whom they viewed are more relatable than health care providers. The findings also highlight the need for "careful attention to interpersonal relationships and communication in the clinical encounter with Black women."

"Findings on the understanding of Black women's skepticism of medical providers and systems reinforced and expanded our view of the importance of addressing these trust issues in future HIV prevention efforts with this population," the researchers write. "More importantly," Dr. Randolph comments, "findings expanded our view of the importance of addressing how our systems that are grounded in historical racism, contribute intentionally or unintentionally to the inequities of care among Black women."

Dr. Randolph and coauthors conclude: "This long history will require that critical conversations about structural and systemic racism and health take place to begin breaking deeply ingrained cycles of discrimination."