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Updated: Oct 2, 2025

Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
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Published on: August 25, 2014

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Decisional Satisfaction, Regret, and Conflict Among Parents of Infants with Neurologic Conditions

Margaret H Barlet1, Peter A Ubel2, Kevin P Weinfurt3

  • 1Duke University School of Medicine, Durham, NC.

The Journal of Pediatrics
|March 1, 2022
PubMed

Insights

Parents of critically ill infants often experience decisional conflict, even with high satisfaction. Decision aids are needed to address uncertainty and values clarity in pediatric intensive care unit (PICU) decision-making.

Area of Science:

  • Pediatric critical care medicine
  • Neonatal neurology
  • Decision science

Background:

  • Critically ill infants with neurologic conditions require complex medical decisions.
  • Parental involvement in decision-making is crucial but can be challenging.

Purpose of the Study:

  • To characterize decisional satisfaction, regret, and conflict among parents of critically ill infants with neurologic conditions.
  • To explore differences in decision outcomes within couples.

Main Methods:

  • Prospective cohort study involving parents of infants in the intensive care unit (ICU).
  • Utilized validated surveys: Family Satisfaction with the ICU (FS-ICU), Decision Regret Scale (DRS), and Decisional Conflict Scale (DCS).
  • Defined high satisfaction (FS-ICU ≥75), high regret/conflict (DRS/DCS >25), and within-couple disagreement (difference ≥25 points).

Main Results:

  • Most mothers reported high satisfaction (77%) and low regret (80%), but 40% experienced high decisional conflict.
  • Parents reported higher conflict regarding uncertainty and values clarity compared to effective decision-making.
  • Significant within-couple disagreement observed for decision regret (47%) and decisional conflict (33%).

Conclusions:

  • Decisional conflict is common in parents of critically ill infants, necessitating decision aids for uncertainty and values clarity.
  • Interventions should consider supporting couples in navigating differing perspectives on medical decisions.
  • High satisfaction and low regret do not preclude significant decisional conflict.
Abstract

Keywords:
critical careneonatologyneurology

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