Abstract

This research investigates the experiences of women who receive a prenatal diagnosis of congenital heart disease, the patient perception of the referral process to the fetal cardiology service and factors contributing to decision-making during pregnancy.

This qualitative research involved semi-structured face-to-face interviews with seven women who had recently received a diagnosis of a fetal heart condition. All interviews were audio recorded and later transcribed to allow thematic analysis to be performed.

The most important findings of this research were the high levels of anxiety experienced by participants while waiting to see a fetal cardiac specialist for confirmation of the diagnosis. Receiving the diagnosis of a fetal heart problem resulted in heightened stress levels in all participants although counselling provided by the fetal cardiology team was very effective. Other findings included factors contributing to the decision to undergo invasive prenatal testing and difficulties with communicating the diagnosis to others, although written information and schematic diagrams provided by the fetal cardiologist were considered very helpful in this process. Additionally, pre-planned delivery in a specialist centre was regarded as very reassuring.

The results of this study indicated the need for more information to be given by practitioners when an abnormality is first suspected. However the practicalities and appropriateness of the implementation of this require further research. All participants were in agreement that they had benefited from the technology and medical expertise enabling their baby's diagnosis prenatally and all were satisfied with the care and support provided to them by the fetal cardiology team.