Parents' experiences of postmortem tumor donation for high-grade gliomas: benefits and suggested improvements

Eden G. Robertson, Claire E. Wakefield, Maria Tsoli, Stewart J. Kellie, Frank Alvaro, Andrew J. Gifford, Martin A. Weber, Michael Rodriguez, Maria Kirby, David S. Ziegler*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

8 Citations (Scopus)
84 Downloads (Pure)

Abstract

Background. Pediatric high-grade glioma is a devastating diagnosis. There has been no improvement in outcomes for several decades, with few children surviving 2 years postdiagnosis. Research progress has been hampered by a lack of tumor samples, which can be used to develop and test novel therapies. Postmortem tumor donations are therefore a valuable opportunity to collect tissue. In this study, we explored Australian parents' experiences of donating their child's tumor for research after their child had died. Methods. We collected qualitative data from 11 bereaved parents who consented to donate samples of their child's high-grade glioma for research postmortem. We asked parents about their perceived benefits/burdens of the autopsy, recommendations for improving consent discussions, and decision regret. Results. Parents hoped that their donation would help to find a cure for future children with high-grade glioma. They described feeling comforted knowing that their child's suffering may help others. Some parents also felt that the donation would help them better understand their child's tumor. Although some parents described discomfort about procedures leading up to the autopsy, parents reported minimal regret regarding their decision to donate their child's tumor. Parents provided recommendations to improve consent discussions, such as providing more information about the autopsy logistics and why the donation was needed. Conclusion. Parents consented to autopsy for altruistic reasons, although donation may also assist parents in their grieving. There is a strong need to improve access to tumor donations for any family who wishes to donate.

Original languageEnglish
Article numbervdab087
Pages (from-to)1-9
Number of pages9
JournalNeuro-Oncology Advances
Volume3
Issue number1
DOIs
Publication statusPublished - 25 Aug 2021
Externally publishedYes

Bibliographical note

Copyright the Author(s) 2021. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.

Keywords

  • childhood cancer
  • DiPG
  • glioma
  • qualitative
  • tumor donation

Fingerprint

Dive into the research topics of 'Parents' experiences of postmortem tumor donation for high-grade gliomas: benefits and suggested improvements'. Together they form a unique fingerprint.

Cite this