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首页> 外文期刊>Qualitative health research >Psychosocial consequences of false-positive newborn screens for cystic fibrosis.
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Psychosocial consequences of false-positive newborn screens for cystic fibrosis.

机译：囊性纤维化假阳性新生儿筛查的社会心理后果。

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摘要

This study was designed to develop a framework for understanding parents' perspectives about the psychosocial consequences of false-positive newborn screening (NBS) results for cystic fibrosis (CF). Through content analysis of interviews with 87 parents of 44 infants, we found that receipt of genetic information through NBS affected parents on intrapersonal and interpersonal levels within a relational family system. Repercussions included wondering about test accuracy, the child's health, and the future; gaining new perspectives and strengthening relationships; questioning paternity; wondering if other relatives had CF/were carriers; searching for the genetic source; sharing genetic information; supporting NBS; and feeling empathy for parents of affected children. We concluded that abnormal NBS results that involve genetic testing can have psychosocial consequences that affect entire families. These findings merit additional investigation of long-term psychosocial sequelae for false-positive results, interventions to reduce adverse iatrogenic outcomes, and the relevance of the relational family system framework to other genetic testing.
机译：这项研究旨在开发一个框架，以了解父母对假阳性新生儿筛查（NBS）结果对囊性纤维化（CF）产生的心理社会影响的观点。通过对44名婴儿的87位父母进行访谈的内容分析，我们发现通过NBS接收遗传信息会影响亲属在家庭关系系统内的人际和人际关系水平。后果包括想知道测试的准确性，孩子的健康状况和未来。获得新的观点并加强关系;质疑亲子关系;想知道其他亲戚是否有CF /是携带者;寻找遗传资源;共享遗传信息;支持国家统计局;对受影响孩子的父母感到同情。我们得出的结论是，涉及基因检测的异常NBS结果可能会影响整个家庭的社会心理后果。这些发现值得对假阳性结果的长期社会心理后遗症，减少不良医源性结果的干预措施以及关系家庭系统框架与其他基因检测的相关性进行进一步调查。

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