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Talking about death with children with incurable cancer: perspectives from parents

Talking about death with children with incurable cancer: perspectives from parents
Talking about death with children with incurable cancer: perspectives from parents
OBJECTIVE:To investigate the rationale and consequences associated with a parent's decision to discuss death with a child with incurable cancer.

STUDY DESIGN:We present data from a larger retrospective study involving bereaved parents of a child who died of cancer. Parents were asked whether they had discussed the impending death with their child, whether they reflected on this discussion positively, their reasons for not discussing death with their child, and the manner in which the conversation regarding death occurred. The data were analyzed qualitatively using a framework approach.

RESULTS:Of the 86 parents of 56 children who answered the questions regarding discussing death with their child, 55 parents of 35 children did not discuss the impending death with their child. The following themes were identified: the parents' inability to discuss the impending death; the parents' desire to protect their child; views regarding talking with children; parents' views of child characteristics; the child's unwillingness to discuss the subject; lack of opportunity to talk; and the child's disability. The parents who did discuss death with their child generally used symbolic and/or religious narratives, or they had brief, direct conversations regarding death. The majority of parents felt positive regarding their decision about whether to talk with their child about his/her impending death.

CONCLUSION:Most parents in this study cited several reasons for not discussing death with their child. Our findings highlight the sensitive and complex issues surrounding these conversations, indicating that there may be a role for clinicians in supporting parents.
0022-3476
1320-1326
van der Geest, Ivana M.M.
b3e44c5a-03a8-40cf-8485-fb3307c2a302
van den Heuvel-Eibrink, Marry M.
093a9aa2-cb40-4839-b6e5-50cfbfb9df15
van Vliet, Liesbeth M.
bcc86414-198d-4de5-a7e4-9781a7c07af7
Pluijm, Saskia M.F.
b252a5c5-2d81-439c-8679-dfb626df7dff
Streng, Isabelle C.
f0ed162b-9c17-4f1e-87c5-5222f3a71385
Michiels, Erna M.C.
c738c978-2d6d-45f8-a7c4-aa3a04673a07
Pieters, Rob
958e8db6-8c78-4019-ac64-d9b46a80670f
Darlington, Anne-Sophie E.
472fcfc9-160b-4344-8113-8dd8760ff962
van der Geest, Ivana M.M.
b3e44c5a-03a8-40cf-8485-fb3307c2a302
van den Heuvel-Eibrink, Marry M.
093a9aa2-cb40-4839-b6e5-50cfbfb9df15
van Vliet, Liesbeth M.
bcc86414-198d-4de5-a7e4-9781a7c07af7
Pluijm, Saskia M.F.
b252a5c5-2d81-439c-8679-dfb626df7dff
Streng, Isabelle C.
f0ed162b-9c17-4f1e-87c5-5222f3a71385
Michiels, Erna M.C.
c738c978-2d6d-45f8-a7c4-aa3a04673a07
Pieters, Rob
958e8db6-8c78-4019-ac64-d9b46a80670f
Darlington, Anne-Sophie E.
472fcfc9-160b-4344-8113-8dd8760ff962

van der Geest, Ivana M.M., van den Heuvel-Eibrink, Marry M., van Vliet, Liesbeth M., Pluijm, Saskia M.F., Streng, Isabelle C., Michiels, Erna M.C., Pieters, Rob and Darlington, Anne-Sophie E. (2015) Talking about death with children with incurable cancer: perspectives from parents. Journal of Pediatrics, 167 (6), 1320-1326. (doi:10.1016/j.jpeds.2015.08.066). (PMID:26427964)

Record type: Article

Abstract

OBJECTIVE:To investigate the rationale and consequences associated with a parent's decision to discuss death with a child with incurable cancer.

STUDY DESIGN:We present data from a larger retrospective study involving bereaved parents of a child who died of cancer. Parents were asked whether they had discussed the impending death with their child, whether they reflected on this discussion positively, their reasons for not discussing death with their child, and the manner in which the conversation regarding death occurred. The data were analyzed qualitatively using a framework approach.

RESULTS:Of the 86 parents of 56 children who answered the questions regarding discussing death with their child, 55 parents of 35 children did not discuss the impending death with their child. The following themes were identified: the parents' inability to discuss the impending death; the parents' desire to protect their child; views regarding talking with children; parents' views of child characteristics; the child's unwillingness to discuss the subject; lack of opportunity to talk; and the child's disability. The parents who did discuss death with their child generally used symbolic and/or religious narratives, or they had brief, direct conversations regarding death. The majority of parents felt positive regarding their decision about whether to talk with their child about his/her impending death.

CONCLUSION:Most parents in this study cited several reasons for not discussing death with their child. Our findings highlight the sensitive and complex issues surrounding these conversations, indicating that there may be a role for clinicians in supporting parents.

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Accepted/In Press date: 27 August 2015
e-pub ahead of print date: 1 October 2015
Published date: December 2015
Organisations: Faculty of Health Sciences

Identifiers

Local EPrints ID: 387063
URI: http://eprints.soton.ac.uk/id/eprint/387063
ISSN: 0022-3476
PURE UUID: cc2774de-a303-47e2-b4a8-9b3a3d37fef6

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Date deposited: 08 Feb 2016 16:50
Last modified: 14 Mar 2024 22:42

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Contributors

Author: Ivana M.M. van der Geest
Author: Marry M. van den Heuvel-Eibrink
Author: Liesbeth M. van Vliet
Author: Saskia M.F. Pluijm
Author: Isabelle C. Streng
Author: Erna M.C. Michiels
Author: Rob Pieters

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