Cardiology in the Young



Original Article

Parental decision-making in congenital heart disease


K. Sarah Hoehn a1a4c1, Gil Wernovsky a2a5, Jack Rychik a2a5, Zhi-yun Tian a2, Denise Donaghue a2, Melissa A. Alderfer a5a6, J. William Gaynor a3a7, Anne E. Kazak a5a6, Thomas L. Spray a3a7 and Robert M. Nelson a1a4
a1 Division of Critical Care Medicine, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA
a2 Division of Cardiology, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA
a3 Division of Cardiothoracic Surgery, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA
a4 Department of Anesthesia and Critical Care Medicine, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA
a5 Department of Pediatrics, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA
a6 Department of Psychology, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA
a7 Department of Surgery, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA

Article author query
hoehn ks   [PubMed][Google Scholar] 
wernovsky g   [PubMed][Google Scholar] 
rychik j   [PubMed][Google Scholar] 
tian z   [PubMed][Google Scholar] 
donaghue d   [PubMed][Google Scholar] 
alderfer ma   [PubMed][Google Scholar] 
gaynor jw   [PubMed][Google Scholar] 
kazak ae   [PubMed][Google Scholar] 
spray tl   [PubMed][Google Scholar] 
nelson rm   [PubMed][Google Scholar] 

Abstract

Objective: To explore whether prenatal diagnosis of congenital heart disease is associated with lower levels of parental distress and greater satisfaction with decisions about cardiothoracic surgery when compared to postnatal diagnosis. Methodology: A combined quantitative–qualitative design was used. Participants included the parents of 31 neonates (30 mothers and 22 fathers) admitted to the cardiac intensive care unit between 1 November 2001 and 1 May 2002 for repair of congenital cardiac malformations. Participants completed self-report measures of anxiety, optimism, and life events pre-operatively, and semi-structured qualitative interviews assessing satisfaction with decision-making within 1 week of the operation. Results: At the time of surgery, mothers of neonates receiving the diagnosis prenatally did not differ from mothers of neonates receiving the diagnosis postnatally on measures of anxiety, optimism, and life events. Fathers of neonates receiving the diagnosis prenatally, however, reported more optimism, lower state and trait anxiety, and fewer negative life events than fathers of neonates receiving the diagnosis postnatally. When we analyzed the interviews, we found that, regardless of the timing of the diagnosis, parents felt as though they made a genuine choice for their baby to have surgery. Conclusions: In this pilot study, fathers who learned prenatally that their child had a congenital cardiac malformation were less distressed than those who discovered this fact only postnatally. From the parental perspective, nonetheless, distress and urgency do not impair their ability to make decisions about neonatal cardiac surgery.

(Accepted February 19 2004)


Key Words: Stress; prenatal diagnosis; postnatal diagnosis; informed consent.

Correspondence:
c1 Correspondence to: K. Sarah Hoehn MD, Mbe, Department of Anesthesiology and Critical Care Medicine, The Children's Hospital of Philadelphia, 34th and Civic Center Boulevard, Room 9329, Philadelphia, PA 19104, USA. Tel: +1 (215) 590 1868; Fax: +1 (215) 590 1415; E-mail: hoehn@email.chop.edu


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