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

Title

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

Creator

Baker JN; Windham JA; Hinds PS; Gattuso JS; Mandrell BN; Gajjar P; West NK; Hammarback T; Broniscer A

Publisher

The Journal Of Pediatrics

Date

2013

Subject

Child; Humans; bereavement; Parents; Prospective Studies; Attitude; Autopsy; Biomedical Research; Intention; Brain neoplasms

Description

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.
2013-08

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Type

Journal Article

Citation List Month

Backlog

Pages

581-586

Issue

2

Volume

163

Citation

Baker JN; Windham JA; Hinds PS; Gattuso JS; Mandrell BN; Gajjar P; West NK; Hammarback T; Broniscer A, “Bereaved parents' intentions and suggestions about research autopsies in children with lethal brain tumors,” Pediatric Palliative Care Library, accessed September 20, 2021, https://pedpalascnetlibrary.omeka.net/items/show/14750.

Social Bookmarking