Date of Award

2015

Document Type

Thesis

Publisher

Edith Cowan University

Degree Name

Doctor of Philosophy

School

School of Nursing and Midwifery

Faculty

Faculty of Health, Engineering and Science

First Supervisor

Dr Joyce Hendricks

Second Supervisor

Professor Anne Williams

Abstract

Background: Genetic technologies have identified some of the genes implicated in cancer susceptibility. Women with mutations in breast/ovarian cancer-susceptibility genes (BRCA1 and 2) have a lifetime combined risk of breast/ovarian cancer of more than 80%. Risk reducing surgery (RRS) reduces cancer risk by as much as 90% in high risk populations. Despite this, some BRCA1/2 mutation-positive women say no to RRS.

Purpose: To illuminate an understanding of why women at high risk of developing breast/ovarian cancer say no to risk reducing surgery (RRS).

Design: Denzin’s (1989) interpretive biography was combined with Dolby-Stahl’s (1985) literary folkloristic methodology to provide a contextualised narrative of the life experiences of six high risk women who said no to RRS. The participants’ stories were captured through semi-structured interviews then read and interpreted through the lenses of three literary theories namely Marxist, Foucauldian and Feminist.

Findings: Different understandings of risk were central to the decision to say no to RRS. RRS was understood as a risk to body and self which superseded the genetic risk of cancer. However despite having the strength to keep their still-healthy bodies intact, the participants benchmarked their decisions to say no against the dominant discourse on cancer risk, leaving them in an unending state of flux as to whether they had made the right decision. The participants shared a genetic pessimism but there also existed an emergent private folklore which illuminated how they attempted to make sense of their experiences and negotiate the conflicts and contradictions thrown up by competing discourses.

Conclusions: The relationship between genetic testing and cancer prevention strategies is not straightforward and genetic information has the potential to harm as well as help high risk women. It is important health care providers approach this area from the viewpoints of those directly involved since without understanding; strategies to support these women may be ineffective.

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