哪些因素对父母做出关于新生儿研究的决策很重要？
What factors are important to parents making decisions about neonatal research?
作者信息
Hoehn K S, Wernovsky G, Rychik J, Gaynor J W, Spray T L, Feudtner C, Nelson R M
机构信息
Department of Anesthesiology and Critical Care Medicine, Children's Hospital of Philadelphia, PA 19104, USA.
出版信息
Arch Dis Child Fetal Neonatal Ed. 2005 May;90(3):F267-9. doi: 10.1136/adc.2004.065078.
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.
背景
尽管患有先天性心脏病的新生儿的父母经常被征求其新生儿参与研究的许可，但对于父母在做出这些决定时所考虑的因素知之甚少。
目的
确定父母决定是否参与研究的原因。
方法
对34位父母关于同意或拒绝参与研究的原因的主动评论进行定性分析。父母的评论是在关于患有先天性心脏病的新生儿临床护理决策的访谈中自发提供的。
结果
父母列举了赞成或反对允许其新生儿参与研究的五种原因：社会利益（n = 18）、对其婴儿的个人利益（n = 16）、参与研究的风险（n = 10）、认为参与无害（n = 9）以及反实验观点（n = 4）。
结论
根据这些原因处理父母的决策，可以加强对危重新生儿父母的许可程序。
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