UBC Theses and Dissertations
Women's decision making regarding hereditary breast and ovarian cancer risk-reducing strategies Howard, Amanda Fuchsia Star
Women found to carry mutations in the BRCA1 or BRCA2 genes have up to an 88% lifetime risk of breast cancer and up to a 65% lifetime risk of ovarian cancer. Strategies to address these heightened risks include breast cancer screening, and risk-reducing (RR) surgeries (i.e., mastectomy and salpingo-oophorectomy). Some women might change their lifestyle or use complementary and alternative medicine to prevent hereditary breast and ovarian cancer (HBOC). The objectives of this research were to describe: a) the HBOC RR strategies used by women prior to receiving their genetic test results, the influence of individual and psychological factors on the uptake of these strategies, and their risk management information needs, b) how women construct the ‘right time’ to consider RR surgery decisions, and c) the process of making decisions regarding HBOC RR strategies. A survey of 143 women was conducted to address the first objective and in-depth interviews with 22 BRCA1/2 carriers were conducted to address the remaining two objectives. Survey respondents engaged in breast cancer screening at the time of genetic testing and a sub-group modified their lifestyle to reduce their cancer risk. Qualitative analyses revealed women’s constructions of the ‘right time’ to consider RR surgery decisions to be when: (1) decisions fit into their lives, (2) they had enough time to think about decisions, (3) they were ready emotionally, (4) all the issues and conflicts were sorted out, (5) there were better options available, and (6) the health care system was ready for them. Grounded theory analyses suggested that the overarching process of making decisions about HBOC RR strategies was one of ‘preserving the self.’ This process was shaped by the characteristics of health services, the nature of HBOC RR decisions, gendered roles, and the women’s perceived proximity to cancer. The women engaged in five decision-making styles, which were characterized by combinations of seven decision-making approaches. Findings from these three studies capture the diverse trajectories of decision making about HBOC risk management and highlight the role of personal and social context in shaping these decisions.
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