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Kenen RH , Shapiro PJ , Hantsoo L , Friedman S , Coyne JC
Women with BRCA1 or BRCA2 mutations renegotiating a post-prophylactic mastectomy identity: self-image and self-disclosure
J Genet Couns. 2007 Dec;16(6) :789-98
PMID: 17917796   
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Abstract
The Facing Our Risk of Cancer Empowered (FORCE) website is devoted to women at risk for hereditary breast and ovarian cancers. One of the most frequently discussed topics on the archived messaged board has been prophylactic mastectomy (PM) for women with a BRCA1/2 mutation. We reviewed the messages, over a 4 year period, of 21 high risk women and their "conversational" partners who originally posted on a thread about genetic testing, genetic counseling and family history. We used a qualitative research inductive process involving close reading, coding and identification of recurrent patterns, relationships and processes in the data. The women sought emotional support, specific experiential knowledge and information from each other. They frequently found revealing their post PM status problematic because of possible negative reactions and adopted self-protective strategies of evasion and concealment outside of their web-based community. The FORCE message board was considered to be a safe place in which the women could be truthful about their choices and feelings. Results are discussed in terms of Goffman's concepts "stigma" and "disclosure" and Charmaz's concepts "interruptions," "intrusions" and a "dreaded future."
Notes
Kenen, Regina H Shapiro, Pamela J Hantsoo, Liisa Friedman, Susan Coyne, James C Research Support, U.S. Gov't, Non-P.H.S. United States Journal of genetic counseling J Genet Couns. 2007 Dec;16(6):789-98. Epub 2007 Oct 5.