title: Teenagers want to be told when a parent's death is near: A nationwide study of cancer-bereaved youths' opinions and experiences.
abstract: BACKGROUND
  We aimed to investigate cancer-bereaved youths' opinions and experiences of being told about a parent's imminent death from cancer and of barriers to this communication.
  
  
  METHODS
  This nationwide population-based survey included 622/851 (73%) youths (aged 18-26) who at age 13-16, 6-9 years earlier had lost a parent to cancer.
  
  
  RESULTS
  In total 595 of 610 (98%) of the participants stated that teenage children should be informed when the parent's death was imminent (i.e. a matter of hours or days, not weeks). 59% stated that they themselves had been told this, 37% by the parents, 7% by parents and healthcare professionals together and 8% by professionals only. Frequent reasons for why the teenager and parents did not talk about imminent death before loss were that one (n=106) or both (n=25) of the parents together with the teenage child had pretended that the illness was not that serious, or that none of the parents had been aware that death was imminent (n=80). Up to a couple of hours before the loss, 43% of participants had not realized that death was imminent.
  
  
  CONCLUSIONS
  In this population-based study virtually all youth who at ages 13-16 had lost a parent to cancer afterwards stated that teenagers should be told when loss is near, i.e. a matter of hours or days, not weeks. Many stated that they had not been given this information and few were informed by professionals, with implications for future improvements in end-of-life care of patients with teenage children.
authors.affiliation: Department of Oncology and Pathology, Karolinska Institutet , Stockholm , Sweden.
authors.forename: Tove
authors.initials: T
authors.lastname: Bylund-Grenklo
authors.forename: Ulrika
authors.initials: U
authors.lastname: Kreicbergs
authors.forename: Charlotta
authors.initials: C
authors.lastname: Uggla
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; D000328:Adult; D001293:Attitude to Death; D002648:Child; D016241:Child of Impaired Parents; D003144:Communication Barriers; D005260:Female; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000523:psychology; D010287:Parent-Child Relations; D010290:Parents; D011368:Professional-Family Relations; D000297:Psychology, Adolescent; D011795:Surveys and Questionnaires; D013548:Sweden; D013727:Terminal Care; D014342:Truth Disclosure; D055815:Young Adult