Parent's perceptions of health care providers actions around child ICU death: what helped, what did not

Am J Hosp Palliat Care. 2013 Feb;30(1):40-9. doi: 10.1177/1049909112444301. Epub 2012 Apr 24.


Purpose: To describe parents' perspectives of health care provider actions that helped or did not around the time of infant/child's intensive care unit (ICU) death. Semistructured interviews with 63 parents (Black, White, and Hispanic) 7 months post infant/child death were audio-recorded, transcribed, analyzed, and themes identified.

Findings: What helped most: compassionate, sensitive staff; understandable explanations of infant's/child's condition; experienced, competent nurses; providers did everything to help infant/child; and parents' involvement in care decisions. What did not help: insensitive, nonsupportive staff; conflict between providers and parents; communication problems around the death; inexperienced nurses and doctors; parents not understanding child's disease, care, complications.

Conclusions: Compassionate, sensitive staff and understandable explanations of children's conditions were most helpful; insensitive, nonsupportive staff least helpful by gender, racial group, or care setting. Conflict between providers and parents was most problematic for minority parents and mothers.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • Attitude of Health Personnel*
  • Child
  • Child, Hospitalized
  • Communication
  • Empathy
  • Ethnicity
  • Female
  • Humans
  • Infant
  • Intensive Care Units, Neonatal / statistics & numerical data
  • Intensive Care Units, Pediatric / organization & administration*
  • Interviews as Topic
  • Male
  • Middle Aged
  • Parents / psychology*
  • Perception*
  • Professional-Family Relations*
  • Sex Factors