Background: Although parents of neonates with congenital heart disease are oft en asked permission for their neonates to participate in research studies, littl e is known about the factors parents consider when making...Background: Although parents of neonates with congenital heart disease are oft en asked permission for their neonates to participate in research studies, littl e is known about the factors parents consider when making these decisions. Objec tive: To determine the reasons for parents’decisions about participation in res earch studies. Methods: Qualitative analysis of the unsolicited comments of 34 p arents regarding reasons for agreeing or declining to participate in research st udies. Parents’comments were offered spontaneously during interviews about clin ical care decisions for neonates with congenital heart disease. Results: Parents cited five types of reason for or against permitting their newborn to participa te in research studies: societal benefit (n = 18), individual benefit for their infant (n = 16), risk of study participation (n = 10), perception that participa tion 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.展开更多
文摘Background: Although parents of neonates with congenital heart disease are oft en asked permission for their neonates to participate in research studies, littl e is known about the factors parents consider when making these decisions. Objec tive: To determine the reasons for parents’decisions about participation in res earch studies. Methods: Qualitative analysis of the unsolicited comments of 34 p arents regarding reasons for agreeing or declining to participate in research st udies. Parents’comments were offered spontaneously during interviews about clin ical care decisions for neonates with congenital heart disease. Results: Parents cited five types of reason for or against permitting their newborn to participa te in research studies: societal benefit (n = 18), individual benefit for their infant (n = 16), risk of study participation (n = 10), perception that participa tion 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.
