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 ones 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 ones 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.
| Identifer | oai:union.ndltd.org:PITT/oai:PITTETD:etd-04152005-101933 |
| Date | 29 June 2005 |
| Creators | Farnsworth, Pamela Lyn |
| Contributors | Sandra Quinn, Sheila Solomon, Robin Grubs, Elizabeth Gettig |
| Publisher | University of Pittsburgh |
| Source Sets | University of Pittsburgh |
| Language | English |
| Detected Language | English |
| Type | text |
| Format | application/pdf |
| Source | http://etd.library.pitt.edu/ETD/available/etd-04152005-101933/ |
| Rights | unrestricted, I hereby certify that, if appropriate, I have obtained and attached hereto a written permission statement from the owner(s) of each third party copyrighted matter to be included in my thesis, dissertation, or project report, allowing distribution as specified below. I certify that the version I submitted is the same as that approved by my advisory committee. I hereby grant to University of Pittsburgh or its agents the non-exclusive license to archive and make accessible, under the conditions specified below, my thesis, dissertation, or project report in whole or in part in all forms of media, now or hereafter known. I retain all other ownership rights to the copyright of the thesis, dissertation or project report. I also retain the right to use in future works (such as articles or books) all or part of this thesis, dissertation, or project report. |
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