Availability of psychological resources for parents receiving a communication of positivity at newborn screening for metabolic diseases in Italy

Abstract

Abstract Receiving communication of positivity at the expanded newborn screening (ENBS) for metabolic diseases is a stressful event in the case of confirmation of positive or false-positive cases. The availability of psychological support to families is crucial across the different communication steps and is recommended by different guidelines and position papers. However, little is known about the availability of psychological resources in the ENBS process. This national survey aimed to provide an overview of the availability of psychological resources for parents who received communication of positivity at the ENBS in the 23 Italian centers and how the support is provided to parents. An online survey was sent to the Heads of the ENBS centers asking about the availability of a clinical psychologist, their involvement in the ENBS process and an estimation of parents receiving psychological support. Nearly 60% of the centers report having a clinical psychologist in the ENBS team; however, in more than 50% of cases the psychologist does not participate in the consultation with parents (nor for the first consultation post-positivity or at confirmation of diagnosis). Furthermore, nearly 60% of the centers reported that parents sometimes rejected the proposal for psychological sessions. Conclusions There is a need for harmonization among the Italian ENBS centers with regard to the availability of psychological resources and how these resources are provided to families. Parents’ needs remained only partially fulfilled.