Layers of information: interacting constraints on breast cancer risk-management by high-risk African American women

ABSTRACT

Objectives: To understand how various decision-making dynamics interact to shape the risk-management choices of African American women at high-risk of breast cancer, and to explore whether African American and White women have differential access to the information and interactions that promote proactive, confident risk-management behavior.

Design: This paper draws on 50 original in-depth, semi-structured interviews with African American and White women at elevated risk of breast cancer. We used inductive grounded-theory methodology to explore the processes by which women make risk-management decisions and to compare those processes between racial groups. Moving backward from women’s decisions about whether or not to engage in specific risk-management behaviors, we explored the patterns that underlie behavioral decisions.

Results: We find that decisions to engage in risk-management behavior rest on three accumulated layers of information. The layer most proximal to making risk-management decisions involves specific information about risk-management options; the middle layer involves general information about managing breast cancer risk; and the foundational layer involves personal perceptions of breast cancer risk and prevention. African American and White women experience distinct dynamics at each of these levels, and these differences may help explain racial differences in risk-management behavior. Compared to their White counterparts, African American women faced additional burdens at every step along the risk-management journey.

Conclusion: These findings suggest that information gathering is more complex than has previously been addressed, that information access and provider access are closely related, and that African American women may be systematically disadvantaged with respect to information-generating experiences. Preventing cancer morbidity and mortality requires that all high-risk women have access to the layers of information necessary to engage in cancer screenings and preventive interventions. These results exemplify the ways that structural, social, and interpersonal inequalities combine to influence risk-management choices.

KEYWORDS:

• Breast cancer prevention
• high-risk women
• African American women
• family history
• qualitative research
• racial differences
• health disparities

Data availability statement

The data that support the findings of this study are available on reasonable request from the corresponding author, TJP. The data are not publicly available due to the inclusion of information that could compromise research participant privacy.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This research was funded by the generous support of the National Cancer Institute, Grant # K01 CA181547.