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Communication and trust in the care provided to a dying parent: A nationwide study of cancer-bereaved youths.
Karolinska Institutet, Stockholm Sjukhem Foundation.
Karolinska Institutet, Sophiahemmet.ORCID iD: 0000-0002-8185-781X
Karolinska Institutet, University of Iceland, Reykjavík, Iceland, Harvard School of Public Health, Boston, USA.
Karolinska Institutet.
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2013 (English)In: Journal of Clinical Oncology, ISSN 0732-183X, E-ISSN 1527-7755, Vol. 31, no 23, 2886-2894 p.Article in journal (Refereed) Published
Abstract [en]

PURPOSE: To assess children's trust in the care provided to a dying parent during the final week of life in relation to end-of-life medical information about disease, treatment, and death.

METHODS: This nationwide population-based survey included 622 (73%) of 851 youths who, 6 to 9 years earlier, at age 13 to 16 years, lost a parent to cancer. We asked about the children's reception of end-of-life professional information and trust in the care provided. We also asked about depression and several potential risk factors of distrust in the care provided.

RESULTS: A majority (82%) reported moderate/very much trust in the care provided. Compared with children who received end-of-life medical information before their loss, the risk of distrust in the care provided was higher in those who received no information (risk ratio [RR], 2.5; 95% CI, 1.5 to 4.1), in those who only received information afterward (RR, 3.2; 95% CI, 1.7 to 5.9), and in those who did not know or remember if end-of-life medical information was provided (RR, 1.7; 95% CI, 1.1 to 2.5). Those reporting distrust in the care provided had an RR of 2.3 (95% CI, 1.5 to 3.5) for depression. Furthermore, the risk of distrust in the care provided was higher among children reporting poor efforts to cure (RR, 5.1; 95% CI, 3.6 to 7.3), and/or a poor relationship with the surviving parent (RR, 2.9; 95% CI, 2.0 to 4.1).

CONCLUSION: Our study suggests that children's trust in the care provided to a dying parent was highest when they received end-of-life medical information before their loss.

Place, publisher, year, edition, pages
2013. Vol. 31, no 23, 2886-2894 p.
National Category
Other Medical Sciences not elsewhere specified
Identifiers
URN: urn:nbn:se:esh:diva-5147DOI: 10.1200/JCO.2012.46.6102PubMedID: 23857973OAI: oai:DiVA.org:esh-5147DiVA: diva2:912876
Available from: 2016-03-18 Created: 2016-03-18 Last updated: 2016-03-18Bibliographically approved

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