Black women in the United States have about a 41% higher chance of dying from breast cancer than white women. Some of that disparity can be linked to genetics, but the environment, lingering mistrust toward the health care system, and suspicion over prescribed breast cancer treatment also play roles, according to a new study from the Brown School at Washington University in St. Louis.
Rachel, a 40-year-old female participant, explained her concerns:
“I figure if they can find a cure for polio, then they can find a cure. I think they don’t really care because it’s mostly attacking the black community, so they don’t care. But if it attacks mostly the white community then it’s a problem.”
The study is based on findings from the first stage of the Center for Interdisciplinary Health Disparities Research process in which study participants shared their beliefs, concerns, and attitudes about breast cancer. Researchers recruited 503 women and men from 15 predominantly black South Side neighborhoods in Chicago, dividing them into 49 focus groups. Participants ranged in age from 18 to 87 years, 63.4% were female, and 96% self-identified as black or African American. Although 3.2% of participants had had breast cancer themselves, 75% reported that they knew someone with breast cancer. Each focus group was led by two trained facilitators.
Although there was an overall belief that government and business could not be trusted in general, many comments dealt with perceptions of racism, historical abandonment, and deliberate neglect of blacks by the medical community. Some cited past events, such as the Tuskegee Syphilis Study, as prelude to more current news. “Even though we think that time heals all wounds, increased access to events like Ferguson and to conflicting stories about what protects and is bad for health—through social and other media—may lead to mistrust,” said lead author Sarah Gehlert, PhD, the E. Desmond Lee Professor of Racial and Ethnic Diversity at the Brown School at the School of Medicine at Washington University. “It’s this mistrust that physicians need to be especially aware of,” Gehlert said, “especially since it affects how patients adhere to treatment.”
Economic segregation also was cited as a factor that’s not being addressed adequately. Participants in 35 of the 49 groups expressed concerns with exposure to harmful effects of water and air pollution, and other environment toxins such as lead in water. “. . . [T]he waste dumps are in poor communities throughout the country, not just Chicago,” said Monica, a 38-year-old female. Added Meegan, a 37-year-old female: “Every day you hear on the news they have something in the water. You don’t know what to do.”
Lack of knowledge also contributes to higher breast cancer rates, according to some participants. “The bottom line, I feel that it’s the people that are not educated as far [as] how often they should get physicals,” said Charles, a 40-year-old male. Those are people that are at risk . . . you all in the medical field need to get a little more proactive instead of sitting back.”
“The approach taken in the study breaks new ground in the use of community-based participatory methods combined with qualitative methods to examine the issue of medical mistrust more in-depth,” said Vanessa B. Sheppard, PhD, associate professor of oncology and assistant director of health disparities research at Georgetown University in Washington, D.C. “Another strength of this study is the inclusion of a large number of male and female participants.”
Gehlert said one of the study’s aims is to increase trust. To that end, researchers are examining what had been uncovered in the focus groups. Also, Gehlert is leading a Vulnerable Communities grant from Susan G. Komen for the Cure with four community partners in the St. Louis ZIP code with the highest cancer mortality. “This research is vital in not only the African American community but also in other ethnic minority communities that have experienced historical oppression.”
Nancy Hodgson, PhD, RN, FAAN, said the study is important because it emphasizes that the pressing national problem of racism and racial tension extends into health care. “Health disparities and their historical antecedents are clearly not well recognized by most health care providers,” said Hodgson, associate professor of acute and chronic care at Johns Hopkins School of Nursing in Baltimore. “Yet, health care encounters are part of any society’s social contract and reflect current tensions and national discourse.”
Hodgson said what this study found to be true in Chicago also is true elsewhere. “The trauma and maltreatment experienced by individuals living in Chicago’s South Side is consistent with the sentiment expressed by older African Americans who were participants in our studies in Philadelphia and Baltimore.”
Sheppard offered a warning about making broad generalizations when one is trying to understand medical mistrust. She said that although in some instances medical mistrust may be directly associated with a particular outcome, in other instances it may involve multiple factors—for example, age and time to treatment. “Research is needed to disentangle the correlates and outcomes associated with medical mistrust to avoid generalizations.” She added,
“For example, we found that medical mistrust was associated with uptake of genetic counseling and testing for hereditary breast and/or ovarian cancer. On the other hand, we have found varying levels of medical mistrust among African American breast cancer patients. This may suggest that not all persons from a subgroup have the same level of medical mistrust but that it is likely also related to one’s personal experiences and societal contextual observations about one’s own community via the media.”
Gehlert and Hodgson agree that the health disparities that exist will not change without fundamentally transforming the environments that helped to create these disparities and the culture of health professionals’ practice and education. “Greater diversity in the health care workforce and efforts to increase cultural competency training that emphasize the deep historical roots of mistrust of health professionals are some steps that can be made to address this issue,” Hodgson said.
Sheppard said that when interacting with patients it is important to consider their social context that may affect her trust and willingness to adhere to medical advice.
“Physicians especially have an important role because every positive interaction that a community member of color has with her provider can potentially help rebuild positive perceptions of the health care research enterprise overall. It cannot be taken for granted that because of one’s position as a health care provider that all patients will begin with trust. Trust, in fact, needs to be earned.”
Featured image credit: Stethoscope by Parentingupstream. CC0 Public domain via Pixabay.