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Fragmentation and control: the experiences of women at high risk for breast and ovarian cancer

O'Donnell, Carolyn (2018) Fragmentation and control: the experiences of women at high risk for breast and ovarian cancer. Undergraduate Thesis, University of Pittsburgh. (Unpublished)

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Abstract

BRCA1 and BRCA2 are tumor suppressor genes that when mutated, are associated with increased susceptibility to several types of cancer including breast and ovarian cancer. The current standard of care for women with a BRCA mutation involves increased screening frequency and decisions around risk reduction strategies that may drastically alter their fertility and sense of womanhood. The uncertainty related to a possible cancer diagnosis may seem endless and unrelenting as these women navigate their future. Previous studies have identified the short-term distress and needs of women undergoing genetic testing and have adjusted appropriately. However, the potential for long-term distress associated with a BRCA mutation is often minimized in the literature and overlooked resulting in women managing their physical and emotional health on their own.
The purpose of this study was to explore the emotional distress and long-term support needs for women without a previous cancer diagnosis who are at high risk for breast and/or ovarian cancer, to make recommendations for practice changes to accommodate these needs. The principal investigator conducted individual in person interviews in a private space at a public location with each of the 5 participants. Participants were recruited through the Pittsburgh Chapter of the National Ovarian Cancer Coalition. The interviews were audio recorded and transcribed using a licensed transcription service. The data were then analyzed by coding and identifying themes and subthemes. The data clustered into five major themes: (1) fragmentation of genetic counselling and post-counsel, (2) coping by exercising control, (3) individualized support, (4) support needs through the life course, and (5) the internet and accessibility of information and support. Although women have different experiences in genetic counseling and long-term support, this study suggests the needs of this population are not currently being met. The themes and subthemes identified in the qualitative data allow healthcare professionals to reevaluate their approach in supporting and informing these women as well as act as a starting point for future research regarding long-term needs, patient follow up, and the genetic counseling process.


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Details

Item Type: University of Pittsburgh ETD
Status: Unpublished
Creators/Authors:
CreatorsEmailPitt UsernameORCID
O'Donnell, Carolyncro15@pitt.educro15
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee ChairCampbell, Gracegbc3@pitt.edugbc3
Committee MemberDonovan, Heididonovanh@pitt.edudonovanh
Committee MemberTerry, Marthamaterry@pitt.edumaterry
Committee MemberHamilton, Rebekahrebekah_hamilton@rush.edu
Date: 24 April 2018
Date Type: Publication
Defense Date: 30 March 2018
Approval Date: 24 April 2018
Submission Date: 17 April 2018
Access Restriction: 1 year -- Restrict access to University of Pittsburgh for a period of 1 year.
Number of Pages: 41
Institution: University of Pittsburgh
Schools and Programs: School of Nursing > Nursing
University Honors College
Degree: BSN - Bachelor of Science in Nursing
Thesis Type: Undergraduate Thesis
Refereed: Yes
Uncontrolled Keywords: BRCA, long-term needs, genetic testing
Date Deposited: 24 Apr 2018 17:02
Last Modified: 02 Jul 2018 15:19
URI: http://d-scholarship.pitt.edu/id/eprint/34325

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