title: Parental decision-making in congenital heart disease.
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.
  
  
  METHODS
  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.
authors.affiliation: Division of Critical Care Medicine, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA 19104, USA. hoehn@email.chop.edu
authors.forename: K Sarah
authors.initials: KS
authors.lastname: Hoehn
authors.forename: Gil
authors.initials: G
authors.lastname: Wernovsky
authors.forename: Jack
authors.initials: J
authors.lastname: Rychik
authors.forename: Zhi-Yun
authors.initials: ZY
authors.lastname: Tian
authors.forename: Denise
authors.initials: D
authors.lastname: Donaghue
authors.forename: Melissa A
authors.initials: MA
authors.lastname: Alderfer
authors.forename: J William
authors.initials: JW
authors.lastname: Gaynor
authors.forename: Anne E
authors.initials: AE
authors.lastname: Kazak
authors.forename: Thomas L
authors.initials: TL
authors.lastname: Spray
authors.forename: Robert M
authors.initials: RM
authors.lastname: Nelson
mesh_terms: D000328:Adult; D001007:Anxiety / Q000209:etiology*; D001290:Attitude; D006348:Cardiac Surgical Procedures; D003657:Decision Making; D005260:Female; D006117:Grief; D006330:Heart Defects, Congenital / Q000175:diagnosis / Q000601:surgery; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D010290:Parents / Q000523:psychology*; D010865:Pilot Projects; D011247:Pregnancy; D011296:Prenatal Diagnosis; D013315:Stress, Psychological / Q000209:etiology*; D013997:Time Factors