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Parent Perspectives on Defining Neonatal Serious Illness
Katherine F Guttmann1, Gabriella N Raviv1, Christine A Fortney2
1Division of Newborn Medicine, Department of Pediatrics, The Icahn School of Medicine at Mount Sinai, New York, New York, USA.
Journal of Palliative Medicine
|June 16, 2023
Summary
Parents largely support a definition for serious neonatal illness, but prefer simpler language for communication. This definition may aid research and clinical care, but requires careful communication to bridge parent-physician perspectives.
Area of Science:
- Neonatal Medicine
- Pediatrics
- Healthcare Communication
Background:
- Defining serious illness in neonates is crucial for clinical care and research.
- Understanding parental perspectives is vital for effective healthcare communication.
Purpose of the Study:
- To explore parental conceptualization of serious neonatal illness.
- To compare parent and physician perspectives on defining neonatal serious illness.
Main Methods:
- Prospective survey study involving parents of neonatal intensive care unit patients.
- Utilized a modified survey with ranking of definition components and thematic analysis of free-text responses.
Main Results:
- 88% of parents agreed with the proposed definition of neonatal serious illness.
- Parents suggested using less jargon and simpler language for communication.
- Identified differences between parent and physician perceptions of serious illness.
Conclusions:
- The proposed definition is potentially useful for research and clinical identification of neonates with serious illness.
- Parental input highlights the need for tailored communication strategies, avoiding verbatim use of the definition with families.
- Acknowledging differing perceptions is key for improving parent-provider communication in neonatal critical care.
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