Psychosocial consequences of false-positive newborn screens for cystic fibrosis.
Psychosocial consequences of false-positive newborn screens for cystic fibrosis.
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DOI：
10.1177/1049732310382919
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发表时间：
2011-02
影响因子：
3.2
通讯作者：
Cavanagh L
中科院分区：
文献类型：
--
作者：
Tluczek A;Orland KM;Cavanagh L
本研究旨在建立一个框架，以了解父母对囊性纤维化（CF）新生儿筛查（NBS）假阳性结果的心理社会后果的看法。通过对44名婴儿的87名父母的访谈内容分析，我们发现，通过NBS接收遗传信息影响了家庭关系系统中的个人内部和人际关系层面的父母。排斥包括怀疑测试的准确性，孩子的健康和未来;获得新的观点和加强关系;质疑亲子关系;想知道其他亲属是否有CF/携带者;寻找遗传来源;分享遗传信息;支持NBS;对受影响儿童的父母表示同情。我们的结论是，涉及基因检测的异常NBS结果可能会产生影响整个家庭的心理社会后果。这些发现值得进一步研究假阳性结果的长期心理社会后遗症，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。
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.
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影响因子：
3.2
作者：
Hsieh, HF;Shannon, SE
通讯作者：
Shannon, SE
DOI：
10.1177/0884217503252035
发表时间：
2003-03-01
影响因子：
1.8
作者：
Holditch-Davis, D;Bartlett, TR;Miles, MS
通讯作者：
Miles, MS
影响因子：
3.1
作者：
Coates, Nicola;Gregory, Maggie;Parsons, Evelyn
通讯作者：
Parsons, Evelyn
影响因子：
8
作者：
Ciske, DJ;Haavisto, A;Farrell, PM
通讯作者：
Farrell, PM
影响因子：
5.2
作者：
Moran, Janette;Quirk, Kirsten;Brownlee, Keith G.
通讯作者：
Brownlee, Keith G.