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Related Experiment Video

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Development of a parent decision support tool for surgical necrotising enterocolitis: a study protocol.

Rosa Verhoeven1,2, Elisabeth M W Kooi2, Sylvia A Obermann-Borst3

  • 1Department of Surgery, Division of Paediatric Surgery, University Medical Centre Groningen, Groningen, The Netherlands r.verhoeven@umcg.nl.

BMJ Open
|December 9, 2024
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Summary

This study develops a decision tool for parents facing critical choices for infants with necrotising enterocolitis, balancing surgery risks against palliative care to improve family-centered care and outcomes.

Keywords:
Decision MakingNEONATOLOGYPaediatric surgery

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Area of Science:

  • Neonatal Medicine
  • Medical Ethics
  • Health Services Research

Background:

  • Necrotising enterocolitis (NEC) is a severe condition in preterm infants, often requiring emergency surgery (laparotomy).
  • High surgical risks and potential for severe long-term disability complicate treatment decisions.
  • Palliative care is an alternative when prognosis is poor, but parental decision-making is challenging.

Purpose of the Study:

  • To develop a decision support tool for parents of infants with NEC.
  • To aid parents in weighing the complex choices between laparotomy and palliative care.
  • To enhance family-centered care and optimize infant outcomes.

Main Methods:

  • Combines Delphi technique and Q-methodology to identify and analyze parental decision factors.
  • Phase 1: Delphi process to establish key decision factors.
  • Phase 2: Q-methodology to identify parental decision-making profiles and tailor advice.

Main Results:

  • Identified key factors influencing parental decisions between laparotomy and palliative care for NEC.
  • Developed distinct parental decision-making profiles based on Q-methodology analysis.
  • Created an online decision support tool to classify parent perspectives and provide tailored advice.

Conclusions:

  • The developed decision support tool aims to assist parents in complex NEC treatment decisions.
  • This approach is expected to improve family-centered care and infant outcomes.
  • Further evaluation will assess the tool's effectiveness in real-world scenarios.