The long history of medical abuses against the Black community continues to contribute to ongoing hesitance and even avoidant health-seeking behaviors. While the Tuskegee experiment seems to be the most readily invoked example of mistreatment, the historical context of early slave involvement in torturous medical experimentation should not be overlooked. In addition, the current day-to-day experiences of Black people in the American healthcare system often unfortunately and negatively reinforce these beliefs and behaviors. The collective psyche of distrust by a large proportion of Black people is further validated by current and startling quantitative evidence, in the form of health disparities.
Health disparities experienced by Black communities serve as evidence of healthcare system failures to provide equitable and efficacious assessment, diagnosis, treatment, and support. Maternal mortality for Black women is unacceptably high, even though most pregnancy-related deaths are preventable. Non-Hispanic Black women experience a pregnancy-related mortality ratio that is 3.2 times higher than that of white women. Even solidly middle-class, educated, and insured Black men and women have worse health outcomes than whites with lower socioeconomic standing. For example, the pregnancy-related mortality rate for Black women with a college degree was 5.2 times higher than among white women with a high school diploma. Unfortunately, similar disparities in cancer, heart disease, and stroke persist despite increasing levels of education for African Americans.
Black people are at a greater risk of leaving AMA. Black race is further compounded with intersections of low socioeconomic status, absence of health insurance, and less education—all of which contribute to poor health outcomes in some Black communities. However, the present status of health inequality and disparities has a lineage rooted in slavery and early medical experimentation on Black bodies. Many of the advances in healthcare that patients benefit from today are a result of trauma inflicted upon Black women and men in the 1800s. In fact, Dr. Marion J. Simms, often referred to as the father of gynecology, perfected procedures for surgical treatment of vesicovaginal and rectovaginal fistulas on slave women. He conducted his painful experiments without anesthesia because of the belief that Black women did not experience pain. Despite the racist paradigm for this misconception about Black people, it has continued to persist.
These early abuses set the stage for ongoing violations and mistreatment of Black people in the American healthcare system. As recently as 1993, the New York State Psychiatric Institute conducted experiments exclusively on 34 Black and Hispanic boys between the ages of 6–10 without the full informed consent of their parents. Journalist Phillip J. Hilts published a story in The New York Times detailing the study, reporting that the boys “were given intravenous doses of fenfluramine to test a theory that violent or criminal behavior may be predicted by levels of certain brain chemicals.” While the implications of the Tuskegee experiment continue to haunt a generation of Black men and women, more recent violations that may not have been as publicized in the mainstream reside in the minds of Black people—in the Northeast and South at the very least.
Widespread distrust of non-minority medical providers and the association of healthcare institutions with maltreatment result in hesitance, resistance, or avoidant health-seeking behaviors for many Black people. Unfortunately, subconscious biases and racist and discriminatory beliefs and behaviors continue to perpetuate much of the disparity in healthcare and the distrust in the Black community.
Notably, there are other dynamics that contribute to hesitation and avoidant health-seeking behaviors. The unique role that religion plays in health-maintenance behaviors of Black people has been found to be both health-protective and threatening. The sometimes-insidious fatalism that underpins faith in the Black community should be considered for its negative impact on advantageous health-seeking and therapeutic-adherent behaviors. For example, among a sample of ethnically diverse adults and children diagnosed with asthma, belief in God was more strongly associated with low medication adherence among African Americans in the sample compared to whites. Absolute belief in the power of prayer and its ability to cure illnesses and heal injuries is a lingering paradigm born out of an ongoing and yet historical memory of betrayal by the healthcare system. The expression “I don’t claim that” is a form of resistance sometimes incantated by marginalized elder Black women in the church in response to a serious diagnosis such as cancer or diabetes. “I don’t claim that” is representative of a psychological refusal of permission that would allow illness to enter the body. Such beliefs may be indicative of denial and result in a lack of treatment seeking or failure to adhere to a therapeutic regimen. In fact, some religious leaders in the Black community suggest that seeking healthcare represents a lack of faith. It is difficult to quantify the extent to which these beliefs negatively impact the health and health outcomes of Black people, as more research is needed to fully understand this phenomenon.
Building upon an understanding of the significance of the Black church and its impact on health, it is important to recognize the essential role of Black clergy serving as first-line mental healthcare providers for Black people in their communities. Compared to other ethnic minorities, Blacks are less likely to seek counseling from mental health professionals. However, given the disparate rates of mental illness among Black people, this can be quite problematic. Barriers to mental healthcare–seeking behaviors are primarily associated with the cultural stigma of mental illness, though distrust of providers and a lack of providers of color are also contributing factors. Given the varying educational background, knowledge of mental health and illness, and beliefs and messaging by Black faith leaders, it is unknown to what extent these factors negatively impact Black mental health help-seeking behaviors.
The influences and historical contexts that may often explain the interactions between the Black community and the US healthcare system are unique. There is no one-size-fits-all approach for understanding behaviors that would seem counterproductive to health protection. Rather, having some contextual understanding, and genuine and intrinsically motivated curiosity during the patient interview and assessment provides the best possible environment for success in achieving mutually determined goals for the patient’s individual plan of care.
Danielle EK Perkins, PhD, RN, is the Center for Excellence in Nursing Education (CENE) Program Manager at Sigma Nursing in Indianapolis, Indiana, USA. She is a member of Sigma’s Alpha Chapter and a contributor to Sigma’s new book, Against Medical Advice.