title: A qualitative study of nurse observations of symptoms in infants at end-of-life in the neonatal intensive care unit.
abstract: OBJECTIVE
  Assessment and management of symptoms exhibited by infants can be challenging, especially at the end-of-life, because of immature physiology, non-verbal status, and limited symptoms assessment tools for staff nurses to utilize. This study explored how nurses observed and managed infant symptoms at the end-of-life in a neonatal intensive care unit.
  This was a qualitative, exploratory study utilizing semi-structured face-to-face interviews, which were tape-recorded, transcribed verbatim, and then analyzed using the Framework Approach.
  
  
  METHODS
  The sample included 14 staff nurses who cared for 20 infants who died at a large children's hospital in the Midwestern United States.
  
  
  METHODS
  Nurses had difficulty recalling and identifying infant symptoms. Barriers to symptom identification were discovered based on the nursing tasks associated with the level of care provided.
  
  
  RESULTS
  Three core concepts emerged from analyses of the transcripts: Uncertainty, Discomfort, and Chaos. Nurses struggled with difficulties related to infant prognosis, time of transition to end-of-life care, symptom recognition and treatment, lack of knowledge related to various cultural and religious customs, and limited formal end-of-life education.
  
  
  CONCLUSIONS
  Continued research is needed to improve symptom assessment of infants and increase nurse comfort with the provision of end-of-life care in the neonatal intensive care unit.
authors.affiliation: The Ohio State University College of Nursing, 1585 Neil Avenue, Columbus, OH 43210, United States; The Research Institute at Nationwide Children's Hospital, Columbus, OH 43205, United States. Electronic address: fortney.19@osu.edu.
authors.forename: Christine A
authors.initials: CA
authors.lastname: Fortney
authors.affiliation: The Ohio State University College of Nursing, 1585 Neil Avenue, Columbus, OH 43210, United States. Electronic address: steward.20@osu.edu.
authors.forename: Deborah K
authors.initials: DK
authors.lastname: Steward
mesh_terms: D000328:Adult; D001291:Attitude of Health Personnel; D005260:Female; D006801:Humans; D007231:Infant, Newborn; D007363:Intensive Care Units, Neonatal; D008875:Middle Aged; D015146:Midwestern United States; D000070659:Patient Comfort / Q000592:standards; D011368:Professional-Family Relations; D036301:Qualitative Research; D063189:Symptom Assessment / Q000451:nursing*; D013727:Terminal Care / Q000379:methods*; D035501:Uncertainty; D000078329:Workforce
keywords: End-of-life care; Infant; Neonatal intensive care unit; Qualitative; Symptoms