Abstract
Recommendations for women with a deleterious BRCA1 or BRCA2 gene mutation include complex medical approaches related to cancer risk reduction and detection. Current science has not yet fully elucidated decision support needs that women face when living with medical consequences associated with known hereditary cancer risk. The purpose of this study was to describe health communication and decision support needs in healthy women with BRCA1/2 gene mutations. The original researchers completed an interpretive secondary qualitative data analysis of 23 phenomenological narratives collected between 2008 and 2010. The Ottawa Decision Support and Patient Centered Communication frameworks guided the study design and analysis. Women described a pattern wherein breast and ovarian cancer risk, health related recommendations and decisions, and personal values were prioritized over time based on life contexts. Knowing versus acting on cancer risk was not a static process but an ongoing balancing act of considering current and future personal and medical values, further compounded by the complexity of recommendations. Women shared stories of anticipatory, physical and psychosocial consequences of the decision making experience. The findings have potential to generate future research questions and guide intervention development. Importantly, findings indicate a need for ongoing, long-term, support from genetics professionals and decision support interventions, which challenges the current practice paradigm.
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Acknowledgments
The authors gratefully acknowledge Dr. Suzanne Dickerson, dissertation chair of the original studies and Dr. Donna Berry, director of the Phyllis F. Cantor Center, for their mentorship and Taylor Hendel for her assistance preparing the manuscript.
We would like to thank the women who participated in the original research and who shared their important stories with us to benefit future research. Additionally, we would like to thank the clinicians and staff who assisted with recruitment of participants. The original studies could not have been completed without funding support from the Sigma Theta Tau Gamma Kappa Chapter and Mark Diamond Research Fund.
Funding for Dr. Underhill to complete data analysis was provided by the National Cancer Institute Cancer & Health Disparities Fellowship Funding (NCIU54CA156732) through the University of Massachusetts Boston and Dana Farber Cancer Institute and through the Phyllis F. Cantor Center. Dr. Cheryl Crotser is the Charles S. Gallaher Chair for in the Department of Nursing at Roberts Wesleyan College.
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Underhill, M.L., Crotser, C.B. Seeking Balance: Decision Support Needs of Women Without Cancer and a Deleterious BRCA1 or BRCA2 Mutation. J Genet Counsel 23, 350–362 (2014). https://doi.org/10.1007/s10897-013-9667-2
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DOI: https://doi.org/10.1007/s10897-013-9667-2