RT Journal Article
SR Electronic
T1 What factors are important to parents making decisions about neonatal research?
JF Archives of Disease in Childhood - Fetal and Neonatal Edition
JO Arch Dis Child Fetal Neonatal Ed
FD BMJ Publishing Group Ltd and Royal College of Paediatrics and Child Health
SP F267
OP FF269
DO 10.1136/adc.2004.065078
VO 90
IS 3
A1 Hoehn, K S
A1 Wernovsky, G
A1 Rychik, J
A1 Gaynor, J W
A1 Spray, T L
A1 Feudtner, C
A1 Nelson, R M
YR 2005
UL http://fn.bmj.com/content/90/3/F267.abstract
AB 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.