Problem: Neonatal and pediatric nurses and physicians care for newborn children who have been saved by technological support but who then spend extremely long periods of time in the hospital, perhaps never being able to be discharged to home. There has been little research identifying newborns who are too sick to be discharged from the health care setting and rare reports of staff or parental response to these long-term hospitalizations.
Purpose: This study provides both the numerical data and description of acutely, chronically ill newborn children whose illnesses caused hospitalizations for greater than 6-months (179 days) in the US.
Methodology: Method triangulation using a national data set (HCUPKID 2003), a researcher created LONGTERM survey, and a qualitative question was used to identify pathologies associated with newborn length of stays greater than 6 months. Neonatal nurses and physicians provided descriptions of children spending at least 6 months in the hospital, including anecdotal reports of caring for those children.
Results: The national H-CUP data set identified 680 infants staying 6 months or longer in the hospital during 2003. Four hundred and twenty-two providers submitted LONGTERM surveys describing these infants, with 228 first hand reports on how it felt to care for children with hospital stays between 6 months and 6 years. Extreme prematurity, respiratory distress and necrotizing enterocolitis contributed to the extremely long hospital stays. Nurse and physician participants felt that extremely long hospital stays were often due to situations in which parents or colleagues were insisting upon continued futile treatment.