title: Parents' views of involvement in concurrent research with their neonates.
abstract: 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.
authors.affiliation: University of Medicine and Dentistry of New Jersey, NJMS-UH Cancer Center, 205 South Orange Ave., Room C-1243, Newark, NJ 07103, USA. wardf1@umdnj.edu
authors.forename: Frances Rieth
authors.initials: FR
authors.lastname: Ward
mesh_terms: D001294:Attitude to Health; D003657:Decision Making / Q000941:ethics; D004644:Emotions; D032984:Ethics, Research; D005260:Female; D006801:Humans; D007231:Infant, Newborn; D007234:Infant, Premature; D007363:Intensive Care Units, Neonatal; D008297:Male; D009511:New England; D018579:Patient Selection / Q000941:ethics; D011368:Professional-Family Relations / Q000941:ethics; D012189:Retrospective Studies; D012306:Risk