Risk-management decision-making data from a community-based sample of racially diverse women at high risk of breast cancer: rationale, methods, and sample characteristics of the Daughter Sister Mother Project survey.

Background: To understand the dynamics that limit use of risk-management options by women at high risk of breast cancer, there is a critical need for research that focuses on patient perspectives. Prior research has left important gaps: exclusion of high-risk women not in risk-related clinical care, exclusion of non-white populations, and lack of attention to the decision-making processes that underlie risk-management choices. Our objective was to create a more inclusive dataset to facilitate research to address disparities related to decision making for breast cancer risk management.

Racial differences in prevention decision making among U.S. women at high risk of breast cancer: A qualitative study.

Purpose: Women at high risk of breast cancer face complex decisions about how to manage those risks. Substantial gaps in current knowledge include how women make these decisions and how decision making may differ across sub-populations. Among these critical gaps are the questions of (a) whether racial differences exist between the experiences of high-risk women navigating breast cancer risk, and (b) what consequences those racial differences might have on women's ability to manage their cancer risks.

Understanding low chemoprevention uptake by women at high risk of breast cancer: findings from a qualitative inductive study of women's risk-reduction experiences.

Background: Chemoprevention is one of several methods that have been developed to help high-risk women reduce their risk of breast cancer. Reasons for the low uptake of chemoprevention are poorly understood. This paper seeks a deeper understanding of this phenomenon by drawing on women's own narratives about their awareness of chemoprevention and their risk-related experiences.

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

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. 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.