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Living With Genetic Test Results for Hereditary Breast and Ovarian Cancer
Author(s) -
Hamilton Rebekah,
Williams Janet K.,
Skirton Heather,
Bowers Barbara J.
Publication year - 2009
Publication title -
journal of nursing scholarship
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.009
H-Index - 80
eISSN - 1547-5069
pISSN - 1527-6546
DOI - 10.1111/j.1547-5069.2009.01279.x
Subject(s) - genetic testing , breast cancer , test (biology) , medicine , grounded theory , disease , gerontology , psychology , gynecology , qualitative research , cancer , pathology , paleontology , social science , sociology , biology
Purpose: To examine adaptation by nonsymptomatic individuals who knew the results of a genetic test for hereditary breast and ovarian cancer (HBOC) for at least 4 years. Design: Longitudinal grounded theory study. Methods: Follow‐up interviews after a 3‐ to 4‐year interval were conducted by telephone or e‐mail with seven asymptomatic participants originally recruited for an earlier study of genetic testing experiences. A total of 14 interviews, 2 for each participant were conducted. Conceptual analysis on these 14 interviews focused on impact on daily life and health behavior decisions made in the intervening years. Findings: Participants described the impact of the result and adaptations made in relationships, sexuality, outlook, and plans for the future. Participants accepted recommended surveillance and preventative measures to maximize a healthy lifestyle and reported both the benefits of knowing their mutation status as well as challenges they had encountered since testing. Conclusions: Adaptation to living with genetic test results indicating a disease‐related mutation is an ongoing process of balancing the knowledge of risk with living a normal life. Over time, awareness of genetic risk does not appear to diminish. Clinical Relevance: Positive and negative long‐term consequences of genetic testing for hereditary breast or ovarian cancer may influence many aspects of the personal lives and health care decisions of those tested.