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Parental decision-making in congenital heart disease

  • K. Sarah Hoehn (a1) (a2), Gil Wernovsky (a3) (a4), Jack Rychik (a3) (a4), Zhi-yun Tian (a3), Denise Donaghue (a3), Melissa A. Alderfer (a4) (a5), J. William Gaynor (a6) (a7), Anne E. Kazak (a4) (a5), Thomas L. Spray (a6) (a7) and Robert M. Nelson (a1) (a2)
  • DOI:
  • Published online: 01 January 2005

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.

Corresponding author
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:
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Cardiology in the Young
  • ISSN: 1047-9511
  • EISSN: 1467-1107
  • URL: /core/journals/cardiology-in-the-young
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