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

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.