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Cancer Nursing:
doi: 10.1097/NCC.0b013e31824530fa

Living My Family’s Story: Identifying the Lived Experience in Healthy Women at Risk for Hereditary Breast Cancer

Underhill, Meghan L. PhD, RN, AOCNS; Lally, Robin M. PhD, RN, AOCN; Kiviniemi, Marc T. PhD; Murekeyisoni, Christine MPH; Dickerson, Suzanne S. DNS, RN

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Background: Based on known or suggested genetic risk factors, a growing number of women now live with knowledge of a potential cancer diagnosis that may never occur. Given this, it is important to understand the meaning of living with high risk for hereditary breast cancer.

Objective: The objective of the study was to explore how women at high risk for hereditary breast cancer (1) form self-identity, (2) apply self-care strategies toward risk, and (3) describe the meaning of care through a high-risk breast program.

Methods: Interpretive hermeneutic phenomenology guided the qualitative research method. Women at high risk for hereditary breast cancer were recruited from a high-risk breast program. Open-ended interview questions focused on experiences living as women managing high risk for breast cancer. Consistent with hermeneutic methodology, the principal investigator led a team to analyze the interview transcripts.

Results: Twenty women participated in in-depth interviews. Analysis revealed that women describe their own identity based on their family story and grieve over actual and potential familial loss. This experience influences self-care strategies, including seeking care from hereditary breast cancer risk experts for early detection and prevention, as well as maintaining a connection for early treatment “when” diagnosis occurs.

Conclusions: Healthy women living with high risk for hereditary breast cancer are living within the context of their family cancer story, which influences how they define themselves and engage in self-care.

Implications for Practice: Findings present important practical, research, and policy information regarding health promotion, psychosocial assessment, and support for women living with hereditary breast cancer risk.

© 2012 Lippincott Williams & Wilkins, Inc.


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