Primary Care Providers' Experiences Notifying Parents of Cystic Fibrosis Newborn Screening Results
Primary Care Providers' Experiences Notifying Parents of Cystic Fibrosis Newborn Screening Results
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DOI：
10.1177/0009922814545619
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发表时间：
2015-01-01
影响因子：
1.6
通讯作者：
Tarini, Beth A.
中科院分区：
文献类型：
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作者：
Finan, Caitlin;Nasr, Samya Z.;Tarini, Beth A.
本研究考察了初级保健提供者（PCP）在父母首次披露囊性纤维化（CF）新生儿筛查（NBS）结果时的经验，以确定在CF NBS过程中改善父母-提供者沟通的方法。CF NBS阳性婴儿的pcp参与了半结构化的电话访谈。访谈采用定性内容分析进行分析。pcp承认向父母透露坏消息很困难，并强调尽量减少父母的焦虑和最大限度地提高父母的理解。pcp使用各种方法通知家长，并分享有关结果重要性的不同信息。父母通知、信息讨论和对父母情感需求的关注方法的差异可能会限制CF NBS阳性儿童的成功随访。通过多方面的干预来改善PCP知识、管理和沟通，可以提高提供者的信心，优化信息传递，并最大限度地减少CF NBS结果最初披露时父母的痛苦。
This study examines primary care provider (PCP) experiences with the initial parental disclosure of cystic fibrosis (CF) newborn screening (NBS) results in order to identify methods to improve parent-provider communication during the CF NBS process. PCPs of infants who received positive CF NBS results participated in semistructured phone interviews. Interviews were analyzed using a qualitative content analysis. PCPs acknowledged the difficulty of breaking bad news to parents, and emphasized minimizing parental anxiety and maximizing parental understanding. PCPs used a variety of methods to notify parents, and shared varying information about the significance of the results. Variation in the method of parental notification, information discussed, and attention to parents' emotional needs may limit successful follow-up of children with positive CF NBS results. A multifaceted intervention to improve PCP knowledge, management, and communication could improve provider confidence, optimize information transfer, and minimize parental distress during the initial disclosure of CF NBS results.