ABSTRACT
OBJECTIVE: Obstetric ultrasound allows for the fetal diagnosis of complex congenital heart disease, which once diagnosed is especially stressful for the affected parents. This study aimed to develop and pilot an educational CD-ROM for parents who had a fetal diagnosis of a congenital heart defect (CHD). MATERIAL AND METHODS: A CD-ROM was developed which included a brief description of a normal heart in text and cartoons, followed by one of five congenital heart abnormalities (again described in text and illustrated by cartoons highlighting the anatomy), the likely interventions (surgical or by catheter), and the local outcomes. A pilot study was conducted whereby parents were provided with the CD-ROM and asked to complete a brief evaluation following the fetal diagnosis of a suspected CHD and subsequent to counseling by the pediatric cardiologist, but prior to the birth of the infant. The CD-ROM was to be viewed at the parents' convenience. The questionnaire was returned via postal mail. RESULTS: A CD-ROM covering five common congenital heart abnormalities was successfully developed and distributed to 20 parents. Fourteen responses were received. The feedback was favorable. The parents found the CD-ROM to be informative and easily understood and supplemented the information previously provided by the pediatric cardiologist. The diagrams were particularly helpful. CONCLUSION: An educational CD-ROM describing a cardiac abnormality of a fetus was successfully created and favorably received, complementing the earlier counseling given. Further development of the CD-ROM with modifications highlighting parental suggestions and to include other abnormalities will allow for a wider audience.
