title: Living my family's story: identifying the lived experience in healthy women at risk for hereditary breast cancer.
abstract: 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.
  
  
  CONCLUSIONS
  Findings present important practical, research, and policy information regarding health promotion, psychosocial assessment, and support for women living with hereditary breast cancer risk.
authors.affiliation: University of Massachusetts and Dana-Farber Cancer Institute Phyllis F. Cantor Center, Boston, MA 02115, USA. meghanl_underhill@dfci.harvard.edu
authors.forename: Meghan L
authors.initials: ML
authors.lastname: Underhill
authors.forename: Robin M
authors.initials: RM
authors.lastname: Lally
authors.forename: Marc T
authors.initials: MT
authors.lastname: Kiviniemi
authors.forename: Christine
authors.initials: C
authors.lastname: Murekeyisoni
authors.forename: Suzanne S
authors.initials: SS
authors.lastname: Dickerson
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D001943:Breast Neoplasms / Q000175:diagnosis / Q000235:genetics* / Q000523:psychology*; D005260:Female; D020022:Genetic Predisposition to Disease / Q000523:psychology*; D007722:Health Knowledge, Attitudes, Practice; D006579:Heterozygote; D006801:Humans; D007407:Interviews as Topic; D008875:Middle Aged; D010375:Pedigree; D036301:Qualitative Research; D011788:Quality of Life; D018570:Risk Assessment; D012494:Sampling Studies; D013315:Stress, Psychological