Abstract
Purpose
Little is known about how women with hereditary breast and/or ovarian cancer who test
positive for a BRCA gene manage the impact of a positive test result on their everyday
lives and in the longer term. This study defined the experience and needs of women
with hereditary breast and ovarian cancer and a positive BRCA test over time.
Methods
A grounded theory approach was taken using qualitative interviews (n = 49) and reflective diaries. Data collected from December 2006 until March 2010
was analysed using the constant comparative technique to trace the development of
how women manage their concerns of inherited cancer.
Results
A four stage substantive theory of maximising survival was generated that defines the experience of women and how they resolve their main
concerns. The process of maximising survival begins prior to genetic testing in women from high risk families as they expect to
get a cancer diagnosis at some time. Women with cancer felt they had experienced the
worst with a cancer diagnosis and altruistically tested for the sake of their children
but a positive test result temporarily shifted their focus to decision-making around
their personal health needs.
Conclusion
This study adds to clinical practice through raising awareness and adding insights
into how women cope with living with inherited cancer risk and the personal and familial
ramifications that ensue from it. A clear multi-professional structured care pathway
for women from genetic testing result disclosure to undergoing risk-reducing surgery
and/or surveillance should be developed.
Keywords
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Article info
Publication history
Published online: April 14, 2014
Identification
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© 2014 Elsevier Ltd. Published by Elsevier Inc. All rights reserved.
