Concerns of Young Women Who are Positive for Brca1 and/or Brca2

Abstract

The purpose of the study was to examine the experience of predictive genetic testing for hereditary breast and ovarian cancer (HBOC) and to compare experiences of younger women (≤ 35 years old) to the older study cohort (36–60 years old). Grounded theory was used to examine the phenomenon of adults choosing to have predictive genetic testing for HBOC. A sample of 19 women, ten ≤ 35 years old was recruited through community and internet support group announcements. Semi-structured interviews were conducted in-person, by telephone or E-mail: according to participant preference. Young women’s experiences were different particularly around concerns about: (i) career plans, (ii) reproduction, and (iii) intimate relationships. Other concerns not specific to young women but also described included: (i) family relationships, (ii) fears of personal mortality, (iii) life and health insurance, and (iv) health information needs. A commonly voiced experience specific to the young adult age group was feeling ‘out-of-place’ in the oncology clinics and support groups which participants perceived as being focused on concerns of older women. Further study may clarify the extent and nature of informational, emotional, social and decision support needs that are unique to this young adult population.