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Parental decision-making in congenital heart disease

Published online by Cambridge University Press:  21 January 2005

K. Sarah Hoehn ,
Gil Wernovsky ,
Jack Rychik ,
Zhi-yun Tian ,
Denise Donaghue ,
Melissa A. Alderfer ,
J. William Gaynor ,
Anne E. Kazak ,
Thomas L. Spray  and
Robert M. Nelson
K. Sarah Hoehn
Affiliation:
Division of Critical Care Medicine, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA Department of Anesthesia and Critical Care Medicine, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA
Gil Wernovsky
Affiliation:
Division of Cardiology, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA Department of Pediatrics, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA
Jack Rychik
Affiliation:
Division of Cardiology, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA Department of Pediatrics, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA
Zhi-yun Tian
Affiliation:
Division of Cardiology, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA
Denise Donaghue
Affiliation:
Division of Cardiology, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA
Melissa A. Alderfer
Affiliation:
Department of Pediatrics, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA Department of Psychology, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA
J. William Gaynor
Affiliation:
Division of Cardiothoracic Surgery, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA Department of Surgery, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA
Anne E. Kazak
Affiliation:
Department of Pediatrics, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA Department of Psychology, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA
Thomas L. Spray
Affiliation:
Division of Cardiothoracic Surgery, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA Department of Surgery, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA
Robert M. Nelson
Affiliation:
Division of Critical Care Medicine, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA Department of Anesthesia and Critical Care Medicine, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA
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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.

Keywords

Stressprenatal diagnosispostnatal diagnosisinformed consent
Type
Original Article
Information
Cardiology in the Young , Volume 14 , Issue 3 , June 2004 , pp. 309 - 314
Copyright
© 2004 Cambridge University Press

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