Embedded mistrust then and now: Perspectives of breast cancer and its treatment among Blacks on Chicago's South Side

BACKGROUND AND PURPOSE:

Though breast cancer mortality has declined over the past 15 years, the risk of black women dying from the disease is 37% higher than that of white women in the United States (Ries et al., SEER Cancer Statistics Review, 2006). In Chicago, the risk is estimated to be 49% higher (Hirschman, Whitman & Ansell, 2007). Common explanations include stage of cancer at diagnosis, access to care, and quality of care. It has been suggested that a historically-rooted mistrust in the health care system (i.e. the legacy of Tuskegee Syphilis Study and other incidents) may underlie these explanations and contribute to health disparities (Gamble, 1997; Washington, 2007). This qualitative study utilized a community-based participatory research (CBPR) approach to elicit attitudes, beliefs, and concerns about breast cancer and its treatment from black Americans living in Chicago's South Side neighborhoods.

METHODS:

503 women and men were recruited from 15 of Chicago's predominantly black South Side communities and were interviewed in 49 groups. Specific techniques were utilized to obtain a representative sample from each of the neighborhood areas. Focus groups were held within the neighborhoods in which participants resided. Interviews based on CBPR principles were designed to allow issues, beliefs, and concerns to emerge. This was done by: 1) constructing groups so that no members were dominant over others and 2) using broad questions that minimized interviewer bias and the shaping of responses. The interviews lasted for approximately two hours, were audiotaped, and transcribed. Using a Grounded Theory analysis methodology, focus group transcripts were sorted using Nvivo Software and manually coded by the research group (Glaser and Strauss, 1967).

RESULTS:

Several themes emerged from the focus groups which may contribute to the higher breast cancer mortality rate for black women: mistrust of physicians and the health care system; the financial impact of cancer care and complications with health insurance; concern about exposure to environmental toxins; feeling discouraged from mammography and screening procedures; feeling fearful of the detrimental effects of radiation therapy, chemotherapy treatment and surgery; community reluctance to speak about cancer; and other life concerns considered more salient than health care.

CONCLUSIONS AND IMPLICATIONS:

One of the most prevalent themes in the analysis was a general sense of mistrust within the black community towards breast cancer and its treatment. This finding reflects the powerful legacy of Tuskegee and other similar historical incidents in understanding the relationship between the black community and the U.S. health care system. Further analysis using Camara Jones' (2000) theoretical framework for understanding racism – institutionalized, personally-mediated, and internalized – provides a more nuanced understanding of how the past continues to sustain this level of mistrust among Blacks towards the health care system. Data gathered from this qualitative study suggest a number of health care policy and practice strategies to reduce breast cancer mortality in black communities. One strategy includes promoting cultural sensitivity among clinical and public health professionals regarding this historically-rooted mistrust within predominantly black communities.