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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.
Acknowledgments
We acknowledge Else Lundin's and Susanne Castells's assistance with data collection, and Lawrence Lundgren for language review. We thank all bereaved children for sharing their experiences with us. This work was supported by the Swedish Cancer Foundation [2008–758]; the Stockholm County Council; the Swedish Research Council [521-2008-4428]; and Ellenstiftelsen.
Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
Supplementary material available online
Supplementary Figure 1 and Table I to be found online at http://informahealthcare.com/doi/abs/10.3109/0284186X.2014.978891.