What factors are important to parents making decisions about neonatal research?

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 pa...

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Bibliographic Details
Published in:Archives of disease in childhood. Fetal and neonatal edition 2005-05, Vol.90 (3), p.F267-f269
Main Authors: Hoehn, K S, Wernovsky, G, Rychik, J, Gaynor, J W, Spray, T L, Feudtner, C, Nelson, R M
Format: Article
Language:English
Subjects:
Altruism
Attitude to Health
Bioethics
Biomedical Research - ethics
Cardiovascular diseases
Congenital diseases
congenital heart disease
Decision Making
Electroencephalography
Heart Defects, Congenital - therapy
Human subjects
Humans
Infant, Newborn
Informed consent
Interviews as Topic
Neonates
Neonatology - ethics
Original
Parental Consent - ethics
Parental Consent - psychology
parental permission
Parents - psychology
Participation
Patient Selection - ethics
Prospective Studies
Qualitative analysis
research ethics
Studies
Therapeutic Human Experimentation - ethics
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Summary: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.
ISSN:1359-2998
1468-2052
DOI:10.1136/adc.2004.065078