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

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 discu

SUBMITTER: Robertson EG 

PROVIDER: S-EPMC8386242 | biostudies-literature | 2021 Jan-Dec

REPOSITORIES: biostudies-literature