title: End-of-life care for the dying child: what matters most to parents.
abstract: OBJECTIVE
  To identify and define the dimensions of pediatric end-of-life (EOL) care that are important to parents.
  
  
  METHODS
  Parents of children who died as a result of an illness, chronic condition, or birth defect while receiving EOL care in hospital or at home in 2004 and 2005.
  
  
  METHODS
  Qualitative data derived from semi-structured and focus group interviews were analyzed using content analysis.
  
  
  METHODS
  A large pediatric hospital located in the Midwestern United States.
  
  
  RESULTS
  Seven dimensions of pediatric EOL care were identified--respect for the family's role, comfort, spiritual care, access to care and resources, communication, support for parental decision making, and caring/ humanism.
  
  
  CONCLUSIONS
  There are clear dimensions of pediatric EOL care that are important to parents; these can be defined in terms of health care provider behaviours, some of which require balancing seemingly conflicting objectives. Developing a measurement tool based on these dimensions would help to improve the quality of pediatric EOL care.
authors.affiliation: Division of Clinical Anesthesia and Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA. norbert.weidner@cchmc.org
authors.forename: Norbert J
authors.initials: NJ
authors.lastname: Weidner
authors.forename: Marcella
authors.initials: M
authors.lastname: Cameron
authors.forename: Rebecca C
authors.initials: RC
authors.lastname: Lee
authors.forename: Judy
authors.initials: J
authors.lastname: McBride
authors.forename: Emily J
authors.initials: EJ
authors.lastname: Mathias
authors.forename: Terri L
authors.initials: TL
authors.lastname: Byczkowski
mesh_terms: D002648:Child; D002662:Child Health Services; D003258:Consumer Behavior; D003657:Decision Making; D004645:Empathy; D005260:Female; D006738:Hospices; D006776:Hospitals, Pediatric; D006801:Humans; D008297:Male; D015146:Midwestern United States; D033262:Narration; D010290:Parents; D011368:Professional-Family Relations; D012944:Social Support; D014342:Truth Disclosure