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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.

Accepted version
Peer-reviewed

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Type

Article

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Authors

Bylund-Grenklo, Tove 
Kreicbergs, Ulrika 
Uggla, Charlotta 
Valdimarsdóttir, Unnur A 

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.

Description

Keywords

Adolescent, Adult, Attitude to Death, Child, Child of Impaired Parents, Communication Barriers, Female, Humans, Male, Neoplasms, Parent-Child Relations, Parents, Professional-Family Relations, Psychology, Adolescent, Surveys and Questionnaires, Sweden, Terminal Care, Truth Disclosure, Young Adult

Journal Title

Acta Oncol

Conference Name

Journal ISSN

0284-186X
1651-226X

Volume Title

54

Publisher

Informa UK Limited