Young Jennifer Louise, Werner-Lin Allison, Mueller Rebecca, Hoskins Lindsey, Epstein Norman, Greene Mark H
a Division of Cancer Epidemiology and Genetics, Clinical Genetics Branch , National Cancer Institute , Bethesda , MD , USA.
b Department of Family Science , University of Maryland at College Park , College Park , MD , USA.
J Psychosoc Oncol. 2017 Jul-Aug;35(4):393-408. doi: 10.1080/07347332.2017.1292574. Epub 2017 Feb 14.
Young women with BRCA1/2 mutations face difficult health-care decisions regarding family formation, fertility, breastfeeding, and whether/when to undergo cancer risk-reducing surgery. This longitudinal qualitative study investigated these life choices during the reproductive years. We conducted two semistructured interviews over three years with 12 reproductive-age BRCA1/2-positive women. Researchers coded transcripts to examine the evolution of risk perceptions, risk management, and family planning decisions. To cope with the conflict between cancer risk reduction versus plans for pregnancy, breastfeeding, and child rearing, participants deliberately prioritized either risk reducing surgery or family formation goals. Implications for mutation carriers and health-care providers are outlined.
携带BRCA1/2基因突变的年轻女性在组建家庭、生育、母乳喂养以及是否/何时接受降低癌症风险手术等方面面临艰难的医疗保健决策。这项纵向定性研究调查了生育年龄段这些生活选择情况。我们在三年时间里对12名生育年龄的BRCA1/2基因阳性女性进行了两次半结构化访谈。研究人员对访谈记录进行编码,以研究风险认知、风险管理和计划生育决策的演变。为了应对降低癌症风险与怀孕、母乳喂养和育儿计划之间的冲突,参与者有意优先考虑降低风险手术或组建家庭目标。文中概述了对突变携带者和医疗保健提供者的启示。