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Updated: Jan 18, 2026

Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
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Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale

Published on: August 25, 2014

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Function over diagnoses: parents of extremely preterm infants give recommendations to clinicians about their

Emilie Thivierge1,2, Thuy Mai Luu1,2,3,4, Claude Julie Bourque1,2,5,6

  • 1Faculté de Médecine, Université de Montréal, Montreal, Quebec, Canada.

Archives of Disease in Childhood. Fetal and Neonatal Edition
|May 27, 2025
PubMed

Insights

Parents of extremely preterm infants desire improved communication from clinicians. Key recommendations include more practical discharge planning, NICU parenting guidance, and optimistic discussions about infant development.

Area of Science:

  • Neonatal Intensive Care Unit (NICU) care
  • Parental satisfaction and communication
  • Extremely preterm infant outcomes

Background:

  • Extremely preterm infants often require prolonged NICU stays.
  • Parental involvement with clinicians spans prenatal and postnatal periods.
  • Limited data exists on parental satisfaction with NICU information and desired improvements.

Purpose of the Study:

  • To explore parental perspectives on information needs for extremely preterm infants.
  • To identify areas for improvement in clinician-parent communication.

Main Methods:

  • Surveyed parents of children born at <29 weeks gestational age (GA) aged 18 months to 7 years.
  • Utilized a qualitative question: 'What do you wish doctors had told you about prematurity?'
  • Employed mixed methods analysis, including thematic analysis and logistic regression.

Main Results:

  • 45% of parents reported satisfaction with information received.
  • Key recommendations focused on practical discharge planning (40%), NICU parenting support (35%), and optimistic communication (26%).
  • Improvements sought were accessibility, personalization, positivity, and practicality.

Conclusions:

  • While half of parents are satisfied, significant opportunities exist to enhance clinician-parent communication.
  • Enhanced communication should be more accessible, personalized, positive, and practical.
  • Addressing these informational needs can improve the experience for families of extremely preterm infants.
Abstract

Keywords:
Child DevelopmentEthicsFollow-Up StudiesIntensive Care Units, NeonatalNeonatology

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