Empowering parents in neonatal decision making using Q-methodology: Development of a decision guidance framework for necrotizing enterocolitis

Background/objectives

Given the high risk of peri-operative mortality and postoperative morbidities in surgical necrotizing enterocolitis (NEC), parents are faced with an extraordinarily difficult and emotionally charged decision. Together with healthcare professionals they must weigh whether pursuing surgery is in the infant's best interest or if palliative care would be more appropriate. The purpose of this study is to explore how parents make this complex decision and to investigate whether Q-methodology could serve as a decision guidance framework for the empowerment of parents.

Methods

We aimed to identify distinct decision-making profiles by analyzing how parents ranked 24 statements relevant to the decision. These statements were based on previously identified influential decision factors and supplemented with items reflecting broader approaches to complex decision-making. Through a by-person factor analysis, we uncovered shared perspectives among participants.

Results

A total of 53 parents of both healthy and affected children participated, 42 of whom could be categorized into one of five distinct parent profiles. These profiles show varying degrees of emotional involvement, reliance on physician guidance, and consideration of long-term consequences.

Conclusion

Our findings suggest that Q-methodology can reveal meaningful patterns in how parents approach critical medical decisions. These insights could inform the development of a decision guidance framework tailored to parental needs. This framework could enhance understanding, promote shared decision making, and improve communication between parents and healthcare professionals. Further research should focus on refining and validating the framework to ensure it effectively supports families navigating high-stakes neonatal care.