Related Experiment Video

Updated: May 29, 2025

Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
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Developing a core outcome set for assessing interventions and care for parents after neonatal death in high-income

Anna Davies1, Charlotte Williams2,3, Christy Burden2,3

  • 1Academic Women's Health Unit, Translational Health Sciences, University of Bristol, Bristol, UK Anna.davies@bristol.ac.uk.

BMJ Open
|February 3, 2025
PubMed

Insights

Developing a Core Outcome Set (COS) to standardize the evaluation of support for parents after neonatal death. This will help identify effective interventions and improve care for bereaved families.

Area of Science:

  • Perinatal health research
  • Clinical trial methodology
  • Patient-centered outcomes research

Background:

  • Neonatal death significantly impacts parental mental health, finances, and relationships.
  • There is a growing need for evidence-based interventions to support grieving parents.
  • Core Outcome Sets (COSs) are crucial for standardizing outcome evaluation in research.

Purpose of the Study:

  • To develop a Core Outcome Set (COS) for evaluating interventions and care for parents following neonatal death in high-income countries.
  • To facilitate future evidence syntheses and identify effective support strategies.
  • To ensure consistent and meaningful outcome measurement in research.

Main Methods:

  • A six-phase approach involving a parent involvement group and steering committee.
  • Systematic review of quantitative studies, qualitative interviews with bereaved parents, and stakeholder think-aloud interviews.
  • International Delphi surveys and consensus meetings to agree on final outcomes and measurement tools.

Main Results:

  • The study outlines a comprehensive methodology for COS development.
  • Stakeholder input is integrated throughout the process to ensure relevance and applicability.
  • Ethical approval has been obtained, and dissemination plans are in place.

Conclusions:

  • The developed COS will standardize outcome assessment in neonatal death research.
  • This will enable robust evidence synthesis and inform the development of effective parental support interventions.
  • The study emphasizes the importance of patient and stakeholder involvement in research.
Abstract

Keywords:
MethodsNEONATOLOGYPatient Reported Outcome Measures

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