Advanced

Teenagers want to be told when a parent's death is near: A nationwide study of cancer-bereaved youths' opinions and experiences

Bylund-Grenklo, Tove; Kreicbergs, Ulrika; Uggla, Charlotta; Valdimarsdottir, Unnur A.; Nyberg, Tommy; Steineck, Gunnar and Fürst, Carl Johan LU (2015) In Acta Oncologica 54(6). p.250-944
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. Material and 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... (More)
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. Material and 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. Conclusion. 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. (Less)
Please use this url to cite or link to this publication:
author
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
Acta Oncologica
volume
54
issue
6
pages
250 - 944
publisher
Taylor & Francis
external identifiers
  • wos:000354479800019
  • scopus:84929310649
ISSN
1651-226X
DOI
10.3109/0284186X.2014.978891
language
English
LU publication?
yes
id
903da3d4-8abd-4ad5-bd5e-72c8e209af87 (old id 7422698)
date added to LUP
2015-07-03 07:04:15
date last changed
2017-10-22 04:06:27
@article{903da3d4-8abd-4ad5-bd5e-72c8e209af87,
  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. Material and 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. Conclusion. 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.},
  author       = {Bylund-Grenklo, Tove and Kreicbergs, Ulrika and Uggla, Charlotta and Valdimarsdottir, Unnur A. and Nyberg, Tommy and Steineck, Gunnar and Fürst, Carl Johan},
  issn         = {1651-226X},
  language     = {eng},
  number       = {6},
  pages        = {250--944},
  publisher    = {Taylor & Francis},
  series       = {Acta Oncologica},
  title        = {Teenagers want to be told when a parent's death is near: A nationwide study of cancer-bereaved youths' opinions and experiences},
  url          = {http://dx.doi.org/10.3109/0284186X.2014.978891},
  volume       = {54},
  year         = {2015},
}