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Updated: Jul 21, 2025

Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
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Communicating a Positive Result at Newborn Screening and Parental Distress

Elisa Lastrucci1, Marta Daniotti2, Elena Procopio2

  • 1Department of Experimental and Clinical Biomedical Sciences, University of Florence, 50019 Florence, Italy.

International Journal of Neonatal Screening
|July 25, 2023
PubMed

Insights

Parents of newborns with positive Expanded Newborn Screening (ENS) results may experience psychological distress. This study identified distress indicators in parents receiving positive ENS results, impacting family wellbeing.

Area of Science:

  • Medical Genetics
  • Pediatrics
  • Psychology

Background:

  • Expanded Newborn Screening (ENS) identifies genetic disorders in newborns.
  • Positive ENS results can cause parental psychological distress, affecting family dynamics and child wellbeing.
  • Limited research quantifies parental distress following positive ENS results.

Purpose of the Study:

  • To investigate and objectify psychological distress indicators in parents of newborns with positive ENS results.
  • To assess the immediate impact of communicating positive ENS results on parental mental health.
  • To inform support strategies for families navigating positive newborn screening outcomes.

Main Methods:

  • Administered Beck Depression Inventory-II, State-Trait Anxiety Inventory-Y, and SF-36 Health Survey to parents.
  • Recruited 87 parents of newborns with positive ENS results.
  • Analyzed questionnaire data to identify distress indicators.

Main Results:

  • 32 out of 87 parents (36.8%) reported discomfort potentially linked to the positive ENS result communication.
  • The study identified specific indicators of parental distress post-ENS notification.
  • Findings highlight the psychological burden on parents of infants with positive newborn screening.

Conclusions:

  • Communicating positive Expanded Newborn Screening results can elicit significant parental distress.
  • Early identification of parental distress is crucial for effective family support and management of childhood conditions.
  • Further research should explore long-term psychological impacts and targeted interventions for affected families.

Keywords:
familiar stressnewborn screeningpositive result

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