Parents' experiences of receiving an antenatal versus postnatal diagnosis of complex congenital heart disease.

BACKGROUND

The time point at which parents receive a diagnosis of congenital heart disease (CHD) has changed over the years due in part to advances in fetal ultrasound. However, CHD remains undiscovered until after birth in some cases. The psychological effect of time of diagnosis on parents' experiences has not been well researched.

AIM

To explore parents' experiences at the time of diagnosis of complex CHD and to compare if experiences differ when receiving an antenatal versus postnatal diagnosis.

METHOD

Descriptive and thematic analysis of primary mixed qualitative and quantitative data, collected in 2012-2013, from an online survey of parents ( n =22) whose infants had undergone stage one surgery for a functionally univentricular heart.

FINDINGS

Four themes emerged: parents' understanding of the condition at the time of diagnosis; parents' emotions at the time of diagnosis; sources of support at the time of diagnosis; and additional sources of information after the diagnosis.

CONCLUSION

There are implications for practice in terms of who provides the diagnosis and, more importantly, how well it is explained. Professionals need to assess parents' emotional status, information needs and level of understanding irrespective of time of diagnosis, so that support is individualised, sensitive and time appropriate.