Living my family's story: Caring for and identifying the lived experience within the context of high risk for hereditary breast cancer

Significance and background. In the past decade, advances in genetic science have given rise to an influx of research and information regarding hereditary risk for breast cancer. This genetic information allows clinicians to quantify a given persons breast cancer risk. A consequence of this scientific advancement is the existence of a population of women who have never had a cancer diagnosis now living with knowledge of increased risk based on known or suggested genetic factors. Importantly, these are healthy individuals living with knowledge of a potential vulnerability to cancer that may never occur. Given this, it is important to examine personal experiences and understand with greater depth the meaning of living with high risk for hereditary breast cancer.;Purpose. To explore how women at high risk for hereditary breast cancer incorporate knowledge of this risk into their lives. Aims. (1) understand how women living with knowledge of hereditary risk form self-identity, (2) explore practical knowledge and self-care strategies women apply to managing this risk, and (3) describe the personal meaning of experiencing care through a high risk breast program.;Philosophical framework. An interpretive hermeneutic phenomenological approach guided the qualitative research method.;Methodology. Twenty women at high risk for hereditary breast cancer were recruited from a high risk breast program. Open ended interview questions focused on personal experiences living as a women managing high risk for breast cancer. Consistent with hermeneutic methodology, the principal investigator led a team to analyze the de-identified interview transcripts based on a modified Diekelman, Allen, and Tanner (1989) method.;Findings and nursing implications. Results demonstrated that these women are living their individual lives based on experiences described within their family story and actively grieving over actual and potential familial loss. This familial story forms the basis of their self-identity, directly influencing their self care strategies. One component of these strategies is seeking out care from a hereditary breast cancer risk expert not only for early detection and prevention, but for early treatment "when" diagnosis occurs. Findings present important practical information regarding health promotion, psychosocial assessment and support for women living with this risk.