Within this cross-sectional survey of diverse breast cancer survivors, we report the stark difference in experiences of discrimination between NH White, Black, and Hispanic women treated for breast cancer in everyday life and the health care setting. To our knowledge, this is the first study to both confirm that Black women report discrimination significantly more often than other women, and to detail the setting and situation where the discrimination is felt in the context of a cancer diagnosis. Our measures demonstrated a high degree of reliability for the experiences reported within and outside of health care. And, despite small sample sizes for those declining at least one component of cancer-directed therapy, we observed several significant associations for discrimination and treatment receipt. Our results add to the growing body of literature aimed to better understand the prevalence and potential impact of discrimination, particularly in the health care, and more specifically cancer care, setting.
Multiple publications have previously demonstrated strong evidence for the impact of structural racism on health, not only when systemic racism occurs within health care but also because of the substantial impact of factors such as neighborhood segregation and public policy [5–8]. Less attention has been paid to the individual, day-to-day experiences for patients with cancer and how this may contribute to health outcomes. Other investigators, such as Sutton et al., have reported a greater incidence of Black women experiencing discrimination in the health care setting compared to White women (47% vs 16% respectively) and a high incidence of lifetime discrimination (82% of NH Black women vs 19% of NH White women) [10, 11]. However, these previous reports have included women who are largely privately insured and college educated, or participants in a single health care system [10, 11]. Our participants were less likely to have private insurance (63%) or a college degree (33.6%), and they were treated at three separate health care systems in two states. Thus, our findings may be more representative of the demographics for Black women with breast cancer.
Our data demonstrate that overall rates of self-reported discrimination in everyday life were significantly higher than in the health care setting and self-reported discrimination among Black women was significantly higher than white women in both everyday and health care settings. Everyday discrimination is a serious concern underscoring challenges that women of color experience in their day-to-day lives. Emerging research on cancer inequities has begun to rigorously investigate the multiple consequences of racism, discrimination, and the chronic stress experienced by the most vulnerable populations. The burgeoning scientific study of living amongst these racist and discriminatory conditions chronically can lead to worse health outcomes is a rapidly growing and important field of research. Discrimination has been associated with lower quality of life among breast cancer survivors [11]. In addition, individual discrimination is associated with physiologic, behavioral and health care use responses that collectively adversely impact health outcomes [9]. Downstream negative consequences include but are not limited to medical mistrust, poor communication, delayed access to care, chronic inflammation, and allostatic load or weathering [6, 9, 17]. As our societal awareness and understanding of these challenges expand, future interventions to alleviate, reverse and mitigate these cancer inequities is critical.
Our results also identify specific experiences of Black patients, which can be addressed with thoughtful interventions and change in health care practices or protocols. For example, rates of reporting feeling ignored in the health care setting were twice as high for Black women than Hispanic women and four times higher than White women. In addition, Black women had higher rates of reporting being treated with less courtesy and less respect. These results can guide intentional changes within the health care setting to address these perceptions. Reinforcement of respect and courtesy can be a crucial first step and a collective priority.
Limitations of the study include the small sample sizes for some analyses and the focus on care in three systems only. The study adapted the discrimination scale which has not been validated in the health care setting. Further, patients who chose to participate in the study may be favorably predisposed to the health care system because they had engaged in cancer care at the participating center, potentially skewing the results.
Overall, this study contributes to foundational work necessary to understand and alleviate discrimination experienced by Black women receiving treatment for breast cancer. An awareness of the frequency and scope of discrimination is an essential step to remedying the problem. Immediate efforts can focus on identifying and mitigating factors contributing to specific experiences of discrimination in the healthcare setting including Black women feeling unseen and unheard, feeling treated with less courtesy and respect, and feeling as though people think they are dishonest or not smart.