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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

doi: 10.1097/NCC.0b013e31824530fa

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.

Author Affiliations: University of Massachusetts and Dana-Farber Cancer Institute Phyllis F. Cantor Center, Boston, Massachusetts (Dr Underhill); University at Buffalo, State University of New York (Drs Lally, Dickerson, and Kiviniemi); Roswell Park Cancer Institute, Buffalo, New York (Dr Lally, Dickerson, and Ms Murekeyisoni).

Funding was received from the Sigma Theta Tau Gamma Kappa Chapter Research Award (Dr Underhill).

The authors have no conflicts of interest to disclose.

Correspondence: Meghan L. Underhill, PhD, RN, AOCNS, University of Massachusetts Boston, Dana Farber Cancer Institute, 450 Brookline Ave, LW517, Boston, MA 02115 (

Accepted for publication December 5, 2011.

© 2012 Lippincott Williams & Wilkins, Inc.