‘It’s Just a Reality,’: Race-Based Medical Mistrust and the Normalization of Medical Discrimination Among Black American Families

Background: Black Americans suffer from a substantial burden of cancer in the United States. For most major cancers, Black Americans have a higher cancer mortality rate and a lower 5-year survivorship rate than White Americans. Older Black Americans have a higher incidence rate, are diagnosed at later stages, and have a lower survivorship rate than White Americans. Although reasons for these disparities vary, recent academic and public discussion has begun to elucidate the impact of interpersonal and structural racism on health for Black communities. Further exploration in the intergenerational impact of race-based medical mistrust and discrimination in older Black American adults and their social networks is needed. The objective of this research is to explore intergenerational and multidirectional communication about the intersection of race-based medical mistrust, racial discrimination, healthcare, and cancer care between older Black American adults and their family members.

Methods: Study recruitment focused on older adults (65+) using the Resource Centers for Minority Aging Research (RCMAR)-funded Michigan Center for Urban African American Aging Research (MCUAAAR) Healthier Black Elder Center’s participant pool as well as lunch and learn events. Older adults and their trusted family members participated in dyadic interviews about medical mistrust, discrimination, cancer prevention and control, and intergenerational communication. Each dyad member was interviewed separately via Zoom using the same interview guide. Interviews averaged 60 minutes in length, were audio recorded, de-identified, and transcribed for analysis. An Adapted Framework method was utilized for dyadic analysis.

Results: Findings from 8 dyads (n=16 individual interviews) emphasized the negative impact of discriminatory experiences and medical mistrust on health attitudes and behaviors. Older adults and their trusted family members described instances of discrimination in medical settings, either directly experienced or experienced by individuals within their social network. These experiences included maltreatment from healthcare providers and staff, pain mismanagement, and feelings of being unheard when recounting medical complaints. As one participant noted, experiences of discrimination were to be expected, rather than uncommon occurrences. For some participants, there was little trust in the medical system to make positive reforms that decrease racial discrimination. This disillusionment for many also resulted in disruptions in care, including leaving a healthcare practice to find an alternative, and wariness in engaging with the healthcare system. These events do not exist in isolation, as participants recounted sharing these experiences or having them shared within their social networks.

Conclusion and Implications: These findings illustrate how participants' experiences of discrimination in medical settings are normalized. This can serve as a reminder to both practitioners and researchers that not only are communities impacted by their own personal history with the medical system, but their social network can also experience the ramifications of discrimination and race-based medical mistrust. Future directions could further describe the multidirectional nature of communication amongst Black families regarding experiences of discrimination resulting in race-based medical mistrust. Additionally, future directions could investigate potential solutions that address the root causes of race-based medical mistrust and empower Black families with resources to achieve optimal health outcomes.