Parental perceptions of care of children at end of life

Am J Hosp Palliat Care. 2013 Feb;30(1):53-8. doi: 10.1177/1049909112440836. Epub 2012 Apr 10.


Objective: Little is known regarding the perceptions of parents about end-of-life care for their children. This study describes parental perceptions of the care of hospitalized, terminally ill children in the areas of (1) clinical management, (2) interdisciplinary support, and (3) pain and symptom management.

Methods: Through a mixed methods design, researchers interviewed a representative sampling of bereaved parents via telephone.

Results: Data provided evidence of areas which lack satisfaction with elements of end-of-life care of hospitalized children.

Conclusion: Parental satisfaction with their child's care during end of life indicates need for improvement in pain management, communication, and parental involvement in decision making. While education cannot guarantee desired changes in attitudes or behaviors, it may provide the essential foundation of knowledge, skills, and ethical understanding needed by professional providers.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Attitude of Health Personnel
  • Child, Hospitalized
  • Child, Preschool
  • Communication*
  • Consumer Behavior*
  • Decision Making
  • Female
  • Health Knowledge, Attitudes, Practice
  • Humans
  • Infant
  • Infant, Newborn
  • Intensive Care Units, Neonatal / organization & administration
  • Intensive Care Units, Pediatric / organization & administration*
  • Intensive Care Units, Pediatric / standards
  • Male
  • Pain Management / methods
  • Parents / psychology*
  • Patient Care Team
  • Professional-Family Relations
  • Terminal Care / organization & administration*
  • Terminal Care / standards