Learning of your parent's BRCA mutation during adolescence or early adulthood: a study of offspring experiences
Learning of your parent's BRCA mutation during adolescence or early adulthood: a study of offspring experiences
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DOI：
10.1002/pon.1384
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发表时间：
2009-02-01
期刊：
影响因子：
3.6
通讯作者：
Daugherty, Christopher K.
中科院分区：
文献类型：
--
作者：
Bradbury, Angela R.;Patrick-Miller, Linda;Daugherty, Christopher K.
目的：调查父母在青春期和成年早期了解父母 BRCA 突变的经历、理解和认知，并探讨其对后代身心健康的影响。方法：对 22 名在 25 岁之前获悉父母 BRCA 突变的成年后代进行半结构化访谈。使用定性方法和响应比例总结数据。结果：后代对共享内容的报告各不相同；对癌症风险和后代基因检测的讨论比风险调整策略的讨论更频繁。大多数后代都表示对共享信息有很好的理解，并且学习这些信息没有负面影响。一些后代报告称，在得知家族突变后，他们的健康行为发生了改变。许多吸烟者戒烟了。后代对围绕父母披露和成年期间基因检测的遗传咨询的兴趣很高。结论：一些后代理解癌症遗传风险的早期沟通并做出适应性反应，披露可能会促进青春期和成年早期健康行为的改善。有必要进行进一步的研究来评估后代如何概念化和利用遗传风险，并确定预测对早期披露成人癌症遗传风险的适应性/适应不良反应的生物心理社会因素。版权所有 (C) 2008 约翰·威利父子有限公司
Objective: To examine the experience, comprehension and perceptions of learning of a parent's BRCA mutation during adolescence and early adulthood, and explore the impact on offspring's physical and psychosocial well-being.Methods: Semi-structured interviews were completed with 22 adult offspring who learned of their parent's BRCA mutation prior to age 25 years. Data were summarized using qualitative methods and response proportions.Results: Offspring reports of the content shared varied; discussion of cancer risks and offspring genetic testing were described more frequently than risk modification strategies. The majority of offspring reported a good understanding of the information shared and no negative aspects for learning this information. Some offspring reported changing their health behaviors after learning of the familial mutation; many tobacco users stopped smoking. Offspring interest in genetic counseling surrounding parent disclosure and genetic testing during adulthood were high.Conclusions: Some offspring understand and respond adaptively to early communication of a genetic risk for cancer, and disclosure may foster improved health behaviors during adolescence and young adulthood. Further research is necessary to evaluate how offspring conceptualize and utilize genetic risk and to identify the biopsychosocial factors predictive of adaptive/maladaptive responses to early disclosure of hereditary risk for adult cancer. Copyright (C) 2008 John Wiley & Sons, Ltd.