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Cancer Control Research

5R03CA070605-02
Oktay, Julianne S.
EXPERIENCES OF WOMEN WHOSE MOTHERS HAD BREAST CANCER

Abstract

Breast cancer is the most commonly diagnosed cancer in American women, and the second leading cause of cancer deaths. killing 46,000 women per year in the U.S. alone. (ACS 1995) In December 1993, a National Action Plan on Breast Cancer identified six priorities to fight breast cancer. One was to address the issues raised by the discovery of two breast cancer susceptibility genes: BRCA1 and BRCA2. The recent discovery of genes which contribute to breast cancer means that genetic testing will be available in a short time. Women whose mothers have had breast cancer will be considered "high risk". Many of these women were children or adolescents at the time of their mothers' diagnosis and are likely to carry unresolved emotions such as anger, grief and guilt from the period of their mother's illness. The presence of unresolved emotional issues will make it very difficult for some of these women to understand the implications of test results. Genetic counselors are currently not well prepared to meet the mental health needs of these women. The goals of this project are: 1. To identify experiences of women with a history of maternal breast cancer which may impede genetic counseling at such time as it becomes available; 2. To identify counseling strategies based on the concerns identified in item 1; and 3. To identify training needs of social workers and other mental health professionals based on the concerns and counseling strategies developed in items 1 and 2. The study uses qualitative methodology. In-depth interviews will be conducted with 40 women whose mothers had breast cancer. Half of these women will have mothers who died of breast cancer, and half will have surviving mothers. Analysis will be done simultaneously with the data gathering, using the "constant comparative method". As concepts develop, preliminary hypotheses will be formulated, and checked with the members of the advisory board, and with the volunteers in second and third round interviews. Also, a peer debriefer will be used to insure reliability. Theory which develops will be "grounded" in the data, and tested for "trustworthiness" using techniques such as: prolonged engagement, persistent observation, member checking, peer debriefing, reflexive journals and an audit trail.

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