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Starting a Support Group for Women with a Hereditary Breast Cancer Predisposition

Farnsworth, Pamela Lyn (2005) Starting a Support Group for Women with a Hereditary Breast Cancer Predisposition. Master's Thesis, University of Pittsburgh. (Unpublished)

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Abstract

Genetic testing for a hereditary breast cancer predisposition has been available since 1996. Since then, many at-risk individuals have pursued testing for a variety of reasons including medical management, surgical decision-making, and family planning. However, as a result of the ability to learn one's cancer risk, women often struggle to incorporate this information into their lives and are faced with complex decision-making. Providing comprehensive services for this population that address these concerns is a matter of public health importance. This study documents the process of designing a support group for women who have tested positive for a hereditary breast cancer predisposition. Thirty-three women who have previously tested positive for mutations in BRCA1, BRCA2, or PTEN were invited to participate in a monthly support/discussion group and were sent questionnaires and informed consent documents for study participation. Nineteen of the thirty-three (57.6%) women responded, five (27.8%) were group participants and fourteen (72.2%) were non-participants. The questionnaire addressed experiences with cancer, management decisions, risk perceptions, existing levels of support, causes of anxiety, and communication with family members. As hypothesized, group participants had higher perceptions of breast cancer risk, lower confidence in medical management decisions, and less support from family and friends than non-participants. In addition, group participants were more likely to be younger, to have received their results 1-2 years ago, to not have a personal history of cancer, and to experience greater overall anxiety. Factors influencing perceived breast cancer risk and the need for support services included the number of first or second degree relatives with breast cancer, whether the relative was deceased or alive, the election of preventative surgery, and the time elapsed since result disclosure. Other findings included correlations between (a) perceived breast cancer risk and both perceived ovarian cancer risk and need for a support group, (b) perceived ovarian cancer risk and anxiety about talking with one's partner, and (c) all items addressing sources of anxiety. This study provides information that can potentially aid public health professionals who work with high-risk women and who are organizing or designing support services for women with a hereditary breast cancer predisposition.


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Details

Item Type: University of Pittsburgh ETD
Status: Unpublished
Creators/Authors:
CreatorsEmailPitt UsernameORCID
Farnsworth, Pamela Lynpamela.farnsworth@hgen.pitt.edu
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee CoChairGettig, Elizabethbgettig@hgen.pitt.eduBGETTIG
Committee CoChairSolomon, SheilaSSOLOMON@wpahs.org
Committee MemberGrubs, Robinrgrubs@hgen.pitt.eduRGRUBS
Committee MemberQuinn, Sandrasquinn@cmh.pitt.edu
Date: 29 June 2005
Date Type: Completion
Defense Date: 12 April 2005
Approval Date: 29 June 2005
Submission Date: 15 April 2005
Access Restriction: No restriction; Release the ETD for access worldwide immediately.
Institution: University of Pittsburgh
Schools and Programs: Graduate School of Public Health > Genetic Counseling
Degree: MS - Master of Science
Thesis Type: Master's Thesis
Refereed: Yes
Uncontrolled Keywords: BRCA; breast cancer; genetics; hereditary; support; support groups
Other ID: http://etd.library.pitt.edu/ETD/available/etd-04152005-101933/, etd-04152005-101933
Date Deposited: 10 Nov 2011 19:37
Last Modified: 19 Dec 2016 14:35
URI: http://d-scholarship.pitt.edu/id/eprint/7184

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