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