Parent Perspectives on Defining Neonatal Serious Illness.

We hoped to understand (1) how parents of seriously ill neonatal intensive care unit patients conceptualize neonatal serious illness, and (2) how parent and physician perspectives on neonatal serious illness might differ. This was a prospective survey study. Parent members of the Courageous Parents Network. We circulated a modified version of a previously developed survey. Participants were presented with a list of potential definition components and asked to rank components by importance and suggest modifications to the definition as needed. Thematic analysis of free-text responses was conducted to identify key themes in parent responses Eighty-eight percent of parent participants agreed or strongly agreed with our working definition of neonatal serious illness. Parents agreed with the content of the definition but suggested using different language (especially less jargon) when using the definition to inform conversations with parents. The majority of parents surveyed for this study supported our definition of neonatal serious illness, which suggests that it may be useful for clinical and research applications. At the same time, parent responses revealed important differences in perceptions about serious illness between parents and physicians. In addition, parents will likely use any definition of neonatal serious illness differently than clinicians. We therefore propose that our definition be used to identify neonates with serious illness for the purposes of research and clinical care, but should not be used verbatim for communication with parents.