What factors are important to parents making decisions about neonatal research?
What factors are important to parents making decisions about neonatal research?
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DOI：
10.1136/adc.2004.065078
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发表时间：
2005-05-01
影响因子：
4.4
通讯作者：
Nelson, RM
中科院分区：
文献类型：
--
作者：
Hoehn, KS;Wernovsky, G;Nelson, RM
背景：虽然先天性心脏病新生儿的父母经常被要求允许其新生儿参加研究，但我们对父母在做出这些决定时考虑的因素知之甚少。目的：确定父母决定参与研究的原因。方法：对 34 名家长主动提出的同意或拒绝参加研究的原因进行评论。在采访中，家长自发地提出了有关先天性心脏病新生儿临床护理决策的评论。结果：家长列举了五种允许或反对允许新生儿参与研究的理由：社会利益（n = 18）、婴儿的个人利益（n = 16）、参与研究的风险（n = 10）、认为参与不会造成伤害（n = 9）和反对实验观点（n = 4）。结论：根据这些原因解决家长的决策问题可以加强危重新生儿家长的家长许可程序。
Background: Although parents of neonates with congenital heart disease are often asked permission for their neonates to participate in research studies, little is known about the factors parents consider when making these decisions.Objective: To determine the reasons for parents' decisions about participation in research studies.Methods: Qualitative analysis of the unsolicited comments of 34 parents regarding reasons for agreeing or declining to participate in research studies. Parents' comments were offered spontaneously during interviews about clinical care decisions for neonates with congenital heart disease.Results: Parents cited five types of reason for or against permitting their newborn to participate in research studies: societal benefit (n = 18), individual benefit for their infant (n = 16), risk of study participation (n = 10), perception that participation posed no harm (n = 9), and anti-experimentation views (n = 4).Conclusion: Addressing parental decision making in the light of these reasons could enhance the parental permission process for parents of critically ill neonates.