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Healthcare 2016, 4(3), 35; doi:10.3390/healthcare4030035

Understanding the Needs of Young Women Regarding Breast Cancer Risk Assessment and Genetic Testing: Convergence and Divergence among Patient-Counselor Perceptions and the Promise of Peer Support

1
Lombardi Comprehensive Cancer Center, Georgetown University, 3300 Whitehaven Street, NW, Suite 4100, Washington, DC 20007, USA
2
College of Nursing, Armour Academic Center, Rush University, 600 S. Paulina Street, Suite 1080, Chicago, IL 60612, USA
3
Lombardi Comprehensive Cancer Center, Georgetown University, 3800 Reservoir Road, NW, Washington, DC 20007, USA
*
Author to whom correspondence should be addressed.
Academic Editors: Joanne Reid and Helen Noble
Received: 30 May 2016 / Revised: 10 June 2016 / Accepted: 21 June 2016 / Published: 28 June 2016
(This article belongs to the Special Issue Holistic Needs of Those Living with and beyond Breast Cancer)
View Full-Text   |   Download PDF [548 KB, uploaded 28 June 2016]   |  

Abstract

Young women from hereditary breast and ovarian cancer (HBOC) families face a series of medical decisions regarding their cancer risk management and integrating this information into their life planning. This presents unique medical and psychosocial challenges that exist without comprehensive intervention. To help lay the groundwork for intervention, we conducted a qualitative study among young women from HBOC families (N = 12; Mean age = 22) and cancer genetic counselors (N = 12) to explicate domains most critical to caring for this population. Women and counselors were interviewed by telephone. The predominant interview themes included preventative care planning and risk management, decision making around the pros and cons of cancer risk assessment, medical management, and psychosocial stresses experienced. Young women endorsed psychosocial stress significantly more frequently than did counselors. Both groups noted the short- and long-term decision making challenges and the support and conflict engendered among familial relationships. Our results suggest young women value the support they receive from their families and their genetic counselors, but additional, external supports are needed to facilitate adaptation to HBOC risk. In feedback interviews focused on intervention planning with a subset of these young women (N = 9), they endorsed the predominant interview themes discovered as important intervention content, a structure that would balance discussion of medical information and psychosocial skill-building that could be tailored to the young women’s needs, and delivery by trained peers familiar with HBOC risk. View Full-Text
Keywords: BRCA1/2; genetic counseling; intervention development; family support; peer support BRCA1/2; genetic counseling; intervention development; family support; peer support
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This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. (CC BY 4.0).

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MDPI and ACS Style

Evans, C.; Hamilton, R.J.; Tercyak, K.P.; Peshkin, B.N.; Rabemananjara, K.; Isaacs, C.; O’Neill, S.C. Understanding the Needs of Young Women Regarding Breast Cancer Risk Assessment and Genetic Testing: Convergence and Divergence among Patient-Counselor Perceptions and the Promise of Peer Support. Healthcare 2016, 4, 35.

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