title: Communication and trust in the care provided to a dying parent: a nationwide study of cancer-bereaved youths.
abstract: OBJECTIVE
  To assess children's trust in the care provided to a dying parent during the final week of life in relation to end-of-life medical information about disease, treatment, and death.
  
  
  METHODS
  This nationwide population-based survey included 622 (73%) of 851 youths who, 6 to 9 years earlier, at age 13 to 16 years, lost a parent to cancer. We asked about the children's reception of end-of-life professional information and trust in the care provided. We also asked about depression and several potential risk factors of distrust in the care provided.
  
  
  RESULTS
  A majority (82%) reported moderate/very much trust in the care provided. Compared with children who received end-of-life medical information before their loss, the risk of distrust in the care provided was higher in those who received no information (risk ratio [RR], 2.5; 95% CI, 1.5 to 4.1), in those who only received information afterward (RR, 3.2; 95% CI, 1.7 to 5.9), and in those who did not know or remember if end-of-life medical information was provided (RR, 1.7; 95% CI, 1.1 to 2.5). Those reporting distrust in the care provided had an RR of 2.3 (95% CI, 1.5 to 3.5) for depression. Furthermore, the risk of distrust in the care provided was higher among children reporting poor efforts to cure (RR, 5.1; 95% CI, 3.6 to 7.3), and/or a poor relationship with the surviving parent (RR, 2.9; 95% CI, 2.0 to 4.1).
  
  
  CONCLUSIONS
  Our study suggests that children's trust in the care provided to a dying parent was highest when they received end-of-life medical information before their loss.
authors.affiliation: Department of Oncology Pathology, Z5:U1 Clinical Cancer Epidemiology, Karolinska Institutet, Karolinska University Hospital, 171 76 Stockholm, Sweden. tove.bylund.grenklo@ki.se
authors.forename: Tove Bylund
authors.initials: TB
authors.lastname: Grenklo
authors.forename: Ulrika C
authors.initials: UC
authors.lastname: Kreicbergs
authors.forename: Unnur A
authors.initials: UA
authors.lastname: Valdimarsdóttir
authors.forename: Tommy
authors.initials: T
authors.lastname: Nyberg
authors.forename: Gunnar
authors.initials: G
authors.lastname: Steineck
authors.forename: Carl Johan
authors.initials: CJ
authors.lastname: Fürst
mesh_terms: D000293:Adolescent; D001293:Attitude to Death; D003142:Communication; D005260:Female; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000523:psychology* / Q000628:therapy*; D010287:Parent-Child Relations; D010290:Parents; D010353:Patient Education as Topic / Q000379:methods* / Q000592:standards; D000297:Psychology, Adolescent; D013315:Stress, Psychological / Q000628:therapy; D013727:Terminal Care / Q000379:methods* / Q000523:psychology / Q000592:standards; D035502:Trust