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On the child's own initiative: parents communicate with their dying child about death
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
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2015 (English)In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 39, no 2, 111-117 p.Article in journal (Refereed) Published
Abstract [en]

Open and honest communication has been identified as an important factor in providing good palliative care. However, there is no easy solution to if, when, and how parents and a dying child should communicate about death. This article reports how bereaved parents communicated about deathwith their child, dying from a malignancy. Communication was often initiated by the child and included communication through narratives such as fairy tales and movies and talking more directly about death itself. Parents also reported that their child prepared for death by giving instructions about his or her grave or funeral and giving away toys.

Place, publisher, year, edition, pages
2015. Vol. 39, no 2, 111-117 p.
National Category
Other Health Sciences
Research subject
Medical Science
URN: urn:nbn:se:uu:diva-237041DOI: 10.1080/07481187.2014.913086ISI: 000347166600006PubMedID: 25153166OAI: diva2:766153
Available from: 2014-11-26 Created: 2014-11-26 Last updated: 2015-11-25Bibliographically approved
In thesis
1. Towards Good Palliation for Children with Cancer: Recognizing the Family and the Value of Communication
Open this publication in new window or tab >>Towards Good Palliation for Children with Cancer: Recognizing the Family and the Value of Communication
2015 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Pediatric cancer imposes a threat on the child’s life and approximately every fifth child diagnosed with cancer will die due to his or her disease. The overall aim of this thesis was to explore palliative care of children with cancer and bereaved family members. The thesis includes data collected retrospectively from medical records, a nationwide questionnaire directed to bereaved parents, a nationwide questionnaire for bereaved siblings and individual interviews with children in cancer care.

Most children dying from cancer were recognized as being beyond cure at time of death; for some this recognition occurred close to death, leaving little time for potential personal preferences (Paper I). Bereaved parents and siblings noticed extensive suffering in the child close to death (Paper II, VI), with physical fatigue being the most commonly reported symptom irrespectively of age and diagnosis of the child (Paper II). Bereaved parents’ psychological well-being appears to be closely related to experiencing suffering in the dying child (Paper III) but also to high-intensity treatment (with bone marrow transplant as the example) of a child that still dies from his or her disease (Paper IV). Bereaved siblings experience a lack in information at the end of their brother’s or sister’s life and report feeling poorly prepared for the loss. An increased risk of anxiety was seen in siblings whom nobody talked to about what to expect at the time of death of their brother or sister (Paper VI). When caring for children with cancer it is vital to take the individual child’s awareness and preferences regarding information into consideration. Bereaved parents who have communicated with their child about death expressed that this often occurred at the child’s own initiative (Paper V) and simple means such as fairy tales could be used to facilitate communication. Ill children themselves expressed in interviews wanting honest, but still hopeful information regarding bad news (Paper VII).

The results of this thesis stress the importance of striving to achieve good communication and keeping a family perspective throughout care of children with cancer.


Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2015. 73 p.
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 1123
palliative care, child, cancer, family, communication, end-of-life care, bereavement
National Category
Pediatrics Cancer and Oncology
Research subject
Medical Science
urn:nbn:se:uu:diva-259409 (URN)978-91-554-9291-5 (ISBN)
Public defence
2015-09-25, A1:111a, BMC, Husargatan 3, Uppsala, 09:00 (English)
Available from: 2015-09-04 Created: 2015-08-03 Last updated: 2015-10-01

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