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Teenagers want to be told when a parent's death is near: A nationwide study of cancer-bereaved youths' opinions and experiences
Karolinska Institutet; Stockholms Sjukhem .
Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.ORCID iD: 0000-0002-8185-781X
Karolinska Institutet .
Centre of Public Health Sciences, Faculty of Medicine, University of Iceland, Reykjavík, Iceland; Department of Epidemiology, Harvard School of Public Health, Boston, USA.
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2015 (English)In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 54, no 6, p. 944-950Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2015. Vol. 54, no 6, p. 944-950
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Other Medical Sciences not elsewhere specified
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URN: urn:nbn:se:esh:diva-5162DOI: 10.3109/0284186X.2014.978891PubMedID: 25467964OAI: oai:DiVA.org:esh-5162DiVA, id: diva2:915179
Available from: 2016-03-29 Created: 2016-03-29 Last updated: 2024-01-22Bibliographically approved

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