Ward Frances Rieth
University of Medicine and Dentistry of New Jersey, NJMS-UH Cancer Center, 205 South Orange Ave., Room C-1243, Newark, NJ 07103, USA.
J Empir Res Hum Res Ethics. 2010 Jun;5(2):47-55. doi: 10.1525/jer.2010.5.2.47.
It would be useful to researchers and bioethicists to know more about parents' decision processes and emotional state during the time they are deciding whether to enroll their infant in a clinical trial. The aim of this research study was to discover whether parents who had been previously asked to enroll their neonates in clinical trials would have found concurrent research about their decision-making overly burdensome. Twenty-seven parents of critically ill neonates who had been approached for their child's research participation in a clinical trial were asked what they believed about the potential burden or value of being interviewed during the time of research decision-making about their infant's participation. For this qualitative descriptive study, interviews were audio-recorded, transcribed, and analyzed using content analysis techniques. Participants considered concurrent research acceptable for them but potentially problematic for others. Theories of risk preferences and social comparison might explain these findings.
对于研究人员和生物伦理学家来说，更多地了解父母在决定是否让其婴儿参加临床试验期间的决策过程和情绪状态会很有帮助。本研究的目的是探究之前被要求让其新生儿参加临床试验的父母是否会觉得同时进行的关于他们决策过程的研究会过于繁重。研究人员询问了27位患有重症的新生儿的父母，这些父母之前被邀请让孩子参加一项临床试验，研究人员询问他们认为在决定婴儿是否参与研究期间接受访谈的潜在负担或价值是什么。对于这项定性描述性研究，访谈进行了录音、转录，并使用内容分析技术进行了分析。参与者认为同时进行的研究对他们自己来说是可以接受的，但对其他人来说可能会有问题。风险偏好理论和社会比较理论或许可以解释这些发现。
