title: The meaning of risk to first degree relatives of women with breast cancer.
abstract: Breast cancer represents a serious health concern for women. It is estimated that hereditary breast cancer accounts for approximately 5-10% of all breast cancer cases and as many as 25% of early-onset cases. We conducted a qualitative study of 26 first degree relatives of women with breast cancer (FDRs) in order to gain a deeper understanding of the effect of risk perception on their screening adherence. The method relied upon semi-structured, in-depth, face-to-face interviews with first degree relatives of women with breast cancer. We characterized FDRs by their response to a single query about their perceived risk. "Risk adopters" (N = 13) were defined as those who expressed a lifetime risk of breast cancer of 50% or more, and "normalizers" (N = 13) were those who indicated a lifetime risk of 49% or less. We conducted content analysis on the responses to the open-ended queries concerning perceived risk for breast cancer, searching for consistent themes among the responses. Surveillance behaviors were high among these FDRs relative to population-based comparisons. The difference between perceived and objective risk for breast cancer was significantly greater among risk adopters than normalizers (p < .0001). Three themes, derived from a content analysis of the FDR's natural language, further distinguish the two groups of women from one another: (1) causal attributions; (2) acceptance of labeling by the physician or other health care provider; and (3) current or remembered surveillance reminders from salient members of the social support network. We suggest different health care provider approaches to FDRs who are normalizers and those who are risk adopters, as well as additional studies of the impact of risk status (as manifest in the FDR's natural language) and surveillance behaviors, over time, among more diverse subgroups.
authors.affiliation: Mailman School of Public Health of Columbia University, 409, 600 West 168th Street, New York, NY 10032, USA. ssg19@columbia.edu
authors.forename: Sherri
authors.initials: S
authors.lastname: Sheinfeld Gorin
authors.forename: Steven M
authors.initials: SM
authors.lastname: Albert
mesh_terms: D000328:Adult; D001943:Breast Neoplasms / Q000235:genetics* / Q000523:psychology; D005192:Family Health; D005260:Female; D020022:Genetic Predisposition to Disease / Q000523:psychology*; D005820:Genetic Testing / Q000706:statistics & numerical data*; D006801:Humans; D007407:Interviews as Topic; D008875:Middle Aged; D009518:New York; D010342:Patient Acceptance of Health Care / Q000523:psychology*; D036301:Qualitative Research; D018570:Risk Assessment; D012944:Social Support; D016387:Women's Health