title: Parental perceptions of care of children at end of life.
abstract: 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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Vanderbilt University School of Nursing, Nashville, TN 37240, USA. maryjo.gilmer@vanderbilt.edu
authors.forename: Mary Jo
authors.initials: MJ
authors.lastname: Gilmer
authors.forename: Terrah L
authors.initials: TL
authors.lastname: Foster
authors.forename: Cynthia J
authors.initials: CJ
authors.lastname: Bell
authors.forename: John
authors.initials: J
authors.lastname: Mulder
authors.forename: Brian S
authors.initials: BS
authors.lastname: Carter
mesh_terms: D001291:Attitude of Health Personnel; D002673:Child, Hospitalized; D002675:Child, Preschool; D003142:Communication; D003258:Consumer Behavior; D003657:Decision Making; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007363:Intensive Care Units, Neonatal / Q000458:organization & administration; D015278:Intensive Care Units, Pediatric / Q000458:organization & administration* / Q000592:standards; D008297:Male; D059408:Pain Management / Q000379:methods; D010290:Parents / Q000523:psychology*; D010348:Patient Care Team; D011368:Professional-Family Relations; D013727:Terminal Care / Q000458:organization & administration* / Q000592:standards