Document Detail

What factors are important to parents making decisions about neonatal research?
MedLine Citation:
PMID:  15846021     Owner:  NLM     Status:  MEDLINE    
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.
K S Hoehn; G Wernovsky; J Rychik; J W Gaynor; T L Spray; C Feudtner; R M Nelson
Publication Detail:
Type:  Journal Article    
Journal Detail:
Title:  Archives of disease in childhood. Fetal and neonatal edition     Volume:  90     ISSN:  1359-2998     ISO Abbreviation:  Arch. Dis. Child. Fetal Neonatal Ed.     Publication Date:  2005 May 
Date Detail:
Created Date:  2005-04-22     Completed Date:  2005-05-26     Revised Date:  2009-11-18    
Medline Journal Info:
Nlm Unique ID:  9501297     Medline TA:  Arch Dis Child Fetal Neonatal Ed     Country:  England    
Other Details:
Languages:  eng     Pagination:  F267-9     Citation Subset:  AIM; E; IM    
Department of Anesthesiology and Critical Care Medicine, Children's Hospital of Philadelphia, PA 19104, USA.
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MeSH Terms
Attitude to Health
Biomedical Research / ethics*
Decision Making
Heart Defects, Congenital / therapy
Infant, Newborn
Interviews as Topic
Neonatology / ethics*
Parental Consent / ethics,  psychology*
Parents / psychology*
Patient Selection / ethics*
Prospective Studies
Therapeutic Human Experimentation / ethics
Comment In:
Arch Dis Child Fetal Neonatal Ed. 2005 May;90(3):F191   [PMID:  15846004 ]

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