Maximising survival : the status passage from cancer diagnosis to inherited genetic condition in women with hereditary breast and/or ovarian cancer

• Main Author: Jeffers, Lisa Alwyn
• Published: University of Ulster 2011
• Subjects: 362.196994490092
• Online Access: http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.550562

Hereditary breast and/or ovarian cancer (HBOC) accounts for 5-10% of all breast and ovarian cancer diagnoses, with a significant proportion of these being connected to a BRCA 1 or BRCA2 mutation. Mutation carriers are at high risk (50%-85%) of developing breast cancer and (20%-40%) risk of ovarian cancer and often face life changing decisions. Most research in this population has been undertaken with women who carry a BRCA1/2 mutation, but have not yet experienced cancer and it is uncertain whether findings reflect the experience of women whose cancer diagnosis is compounded by a positive genetic test. Aim and Methods:' This study aims to understand the impact of a positive genetic test on affected women after they leave the genetic clinic. Grounded theory methodology was selected as most appropriate. A two stage approach incorporating a retrospective group (n=11) and a longitudinal group (n=15) was used. Theoretical sampling of twenty-six women, three relatives and four health professionals (n=33) generated the total number of interviews (n=49). Patients completed reflective diaries. Findings: A substantive theory of maximising survival was generated that explains and predicts the behaviour and psychosocial processes women experience. Maximising survival is a basic social psychological process with four stages: behaving altruistically, verifying genetic status, striving to contain cancer and reconstituting identity. Conclusions: Initially women's main concern is passing on an abnormal gene that could compromise their children's survival, but the positive test result heightened concerns for their own survival and prioritised their own health needs. Absence of a clear care pathway for these women as they moved through testing, genetic diagnosis, surgery and beyond coupled with a lack of information and support contributed to their anxiety. Closer multidisciplinary working and further engagement with service users is required to develop more appropriate and responsive care for this population.