Abstract

OBJECTIVE: Receiving communication of positivity for metabolic disorders at newborn screening can be an extremely stressful experience for families, impacting the well-being and the quality of interaction with the newborn over short and long periods. Family functioning can be affected by various sources of distress, and psychological support is a pivotal intervention to mitigate its consequences.

MATERIALS AND METHODS: This report focuses on the long-term availability of psychological support for families as part of a wider national survey on psychological resources offered in the 23 Italian metabolic centers.

RESULTS: Results showed that only 26% of the centers provide long-term psychological support, and in nearly 70% of cases, families are referred to psychological services available outside metabolic centers.

CONCLUSIONS: Given the specificity of metabolic diseases, psychological support should be guaranteed throughout all communication processes and within metabolic centers.