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J Pediatr. 2013 Aug;163(2):581-6. doi: 10.1016/j.jpeds.2013.01.015. Epub 2013 Feb 19.

Bereaved parents' intentions and suggestions about research autopsies in children with lethal brain tumors.

Author information

1
Division of Quality of Life and Palliative Care, Department of Pediatric Medicine, St. Jude Children's Research Hospital, Memphis, TN 38105, USA. justin.baker@stjude.org

Abstract

OBJECTIVE:

To determine bereaved parents' perceptions about participating in autopsy-related research and to elucidate their suggestions about how to improve the process.

STUDY DESIGN:

A prospective multicenter study was conducted to collect tumor tissue by autopsy of children with diffuse intrinsic pontine glioma. In the study, parents completed a questionnaire after their child's death to describe the purpose for, hopes (ie, desired outcomes of), and regrets about their participation in autopsy-related research. Parents also suggested ways to improve autopsy-related discussions. A semantic content analytic method was used to analyze responses and identify themes within and across parent responses.

RESULTS:

Responses from 33 parents indicated that the main reasons for participating in this study were to advance medical knowledge or find a cure, a desire to help others, and choosing as their child would want. Parents hoped that participation would help others or help find a cure as well as provide closure. Providing education/anticipatory guidance and having a trusted professional sensitively broach the topic of autopsy were suggestions to improve autopsy discussions. All parents felt that study participation was the right decision, and none regretted it; 91% agreed that they would make the choice again.

CONCLUSION:

Because autopsy can help advance scientific understanding of the disease itself and because parents reported having no regret and even cited benefits, researchers should be encouraged to continue autopsy-related research. Parental perceptions about such studies should be evaluated in other types of pediatric diseases.

KEYWORDS:

DIPG; Diffuse intrinsic pontine glioma

PMID:
23433673
PMCID:
PMC3664241
DOI:
10.1016/j.jpeds.2013.01.015
[Indexed for MEDLINE]
Free PMC Article
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