title: Bereaved parents and siblings offer advice to health care providers and researchers.
abstract: OBJECTIVE
  To determine how to improve care for families by obtaining their advice to health care providers and researchers after a child's death from cancer.
  
  
  METHODS
  Families with a surviving sibling (age, 8 to 17 y) were recruited from cancer registries at 3 hospitals in the United States and Canada 3 to 12 months (M=10.4, SD=3.5) after the child's death.
  
  
  METHODS
  Data were collected in the home.
  
  
  METHODS
  Participants (N=99) included 36 mothers, 24 fathers, and 39 siblings from 40 families.
  
  
  METHODS
  Each participant completed a qualitative interview that was audio recorded, transcribed, and coded for thematic content.
  
  
  RESULTS
  Five major themes included the need for: (a) improved communication with the medical team, (b) more compassionate care, (c) increased access to resources, (d) ongoing research, and (e) offering praise. Interwoven within the 5 themes was a subtheme of continuity of care.
  
  
  CONCLUSIONS
  Many participants were pleased with the care the child with cancer received, but others noted areas in need of improvement, particularly medical communication and continuity of care. Additional research is needed to inform interventions to improve services for families of children with life-limiting conditions.
authors.affiliation: The Research Institute at Nationwide Children's Hospital and The Ohio State University, Columbus, OH 43205, USA.
authors.forename: Amii C
authors.initials: AC
authors.lastname: Steele
authors.forename: Julia
authors.initials: J
authors.lastname: Kaal
authors.forename: Amanda L
authors.initials: AL
authors.lastname: Thompson
authors.forename: Maru
authors.initials: M
authors.lastname: Barrera
authors.forename: Bruce E
authors.initials: BE
authors.lastname: Compas
authors.forename: Betty
authors.initials: B
authors.lastname: Davies
authors.forename: Diane L
authors.initials: DL
authors.lastname: Fairclough
authors.forename: Terrah L
authors.initials: TL
authors.lastname: Foster
authors.forename: Mary
authors.initials: M
authors.lastname: Jo Gilmer
authors.forename: Nancy
authors.initials: N
authors.lastname: Hogan
authors.forename: Kathryn
authors.initials: K
authors.lastname: Vannatta
authors.forename: Cynthia A
authors.initials: CA
authors.lastname: Gerhardt
mesh_terms: D000293:Adolescent; D000328:Adult; D001601:Bereavement; D002648:Child; D003142:Communication; D004645:Empathy; D005260:Female; D006282:Health Personnel / Q000523:psychology / Q000592:standards*; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D009369:Neoplasms / Q000523:psychology* / Q000628:therapy*; D010290:Parents / Q000523:psychology*; D017060:Patient Satisfaction; D035781:Siblings / Q000523:psychology*