Parent’s Perceptions of Health Care Providers Actions Around Child ICU Death: What Helped, What Did Not

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.