title: Problems and hopes perceived by mothers, fathers and physicians of children receiving palliative care.
abstract: BACKGROUND
  The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child.
  
  
  OBJECTIVE
  (i) Describe the problems and hopes reported by mothers, fathers and physicians of children receiving palliative care; (ii) examine the observed concordance between participants; (iii) examine parental perceived agreement; and (iv) examine whether parents who identified specific problems also specified corresponding hopes, or whether the problems were left 'hopeless'.
  
  
  METHODS
  Seventy-one parents and 43 physicians were asked to report problems and hopes and perceived agreement for 50 children receiving palliative care. Problems and hopes were classified into eight domains. Observed concordance was calculated between parents and between each parent and the physicians.
  
  
  RESULTS
  The most common problem domains were physical body (88%), quality of life (74%) and medical knowledge (48%). The most common hope domains were quality of life (88%), suffering (76%) and physical body (39%). Overall parental dyads demonstrated a high percentage of concordance (82%) regarding reported problem domains and a lower percentage of concordance on hopes (65%). Concordance between parents and physicians regarding specific children was lower on problem (65-66%) and hope domains (59-63%). Respondents who identified problems regarding a child's quality of life or suffering were likely to also report corresponding hopes in these domains (93 and 82%, respectively).
  
  
  CONCLUSIONS
  Asking parents and physicians to talk about problems and hopes may provide a straightforward means to improve the quality of shared decision making for critically ill children.
authors.affiliation: Pediatric Advanced Care Team, The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
authors.forename: Douglas L
authors.initials: DL
authors.lastname: Hill
authors.affiliation: Department of Anesthesiology and Critical Care Medicine, The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
authors.forename: Victoria A
authors.initials: VA
authors.lastname: Miller
authors.affiliation: Pediatric Advanced Care Team, The University of Pennsylvania School of Dental Medicine, Philadelphia, PA, USA.
authors.forename: Kari R
authors.initials: KR
authors.lastname: Hexem
authors.affiliation: Pediatric Advanced Care Team, The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
authors.forename: Karen W
authors.initials: KW
authors.lastname: Carroll
authors.affiliation: Pediatric Advanced Care Team, The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
authors.forename: Jennifer A
authors.initials: JA
authors.lastname: Faerber
authors.affiliation: Pediatric Advanced Care Team, The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
authors.forename: Tammy
authors.initials: T
authors.lastname: Kang
authors.affiliation: Pediatric Advanced Care Team, The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
authors.forename: Chris
authors.initials: C
authors.lastname: Feudtner
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D003657:Decision Making; D005220:Fathers / Q000523:psychology*; D005260:Female; D065026:Hope; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D009035:Mothers / Q000523:psychology*; D010166:Palliative Care / Q000523:psychology; D010820:Physicians; D011340:Problem Solving; D011368:Professional-Family Relations; D011788:Quality of Life; D055815:Young Adult
keywords: agreement; concordance; paediatric palliative care; parental decision making