A Qualitative Exploration of the Impact of Positive BRCA1/2 Mutation Status on the Lives of Young Women
- Recruit 30-50 BRCA1/2-positive women aged 18-35 to participate in a semi-structured,
qualitative methods interview study.
- Facilitate focus group including additional mutation-positive women (n = 25-50) to
provide feedback regarding results and analyses.
- Increase knowledge of young women's experiences in navigating the tasks and challenges
of young adulthood, within the context of their experiences as BRCA1/2 mutation
carriers, including family history, genetic testing, couple relationships, family
formation, and cancer risk management.
- Verify new information via focus groups with other mutation-positive individuals.
- Disseminate new knowledge via professional presentations and publications.
OUTLINE: Participants undergo telephone interviews for approximately 90 minutes, comprising
open-ended questions about demographic information and personal history of cancer; four
questions about the history of cancer in their families; experiences with genetic testing;
couple relationships, including experiences with disclosure of positive mutation status to
past, current, and/or future partners; nexus of experiences as mutation-positive and their
plans regarding family creation; and questions regarding the use of cancer risk-management
and risk-reducing strategies for qualitative analysis of couple and family treatment
strategies. Participants also undergo focus group sessions in-person at the Joining FORCEs
Qualitative information gathered
Mark H. Greene, MD
Clinical Genetics Branch
|Warren Grant Magnuson Clinical Center - NCI Clinical Trials Referral Office||Bethesda, Maryland 20892-1182|