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Text
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<a href="http://doi.org/10.1016/j.jpeds.2013.01.015" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpeds.2013.01.015</a>
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Title
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Bereaved parents' intentions and suggestions about research autopsies in children with lethal brain tumors
Publisher
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The Journal Of Pediatrics
Date
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2013
Subject
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Child; Humans; bereavement; Parents; Prospective Studies; Attitude; Autopsy; Biomedical Research; Intention; Brain neoplasms
Creator
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Baker JN; Windham JA; Hinds PS; Gattuso JS; Mandrell BN; Gajjar P; West NK; Hammarback T; Broniscer A
Description
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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
Identifier
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<a href="http://doi.org/10.1016/j.jpeds.2013.01.015" target="_blank" rel="noreferrer">10.1016/j.jpeds.2013.01.015</a>
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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
The nature or genre of the resource
Journal Article
2013
Attitude
Autopsy
Backlog
Baker JN
Bereavement
Biomedical Research
Brain Neoplasms
Broniscer A
Child
Gajjar P
Gattuso JS
Hammarback T
Hinds PS
Humans
Intention
Journal Article
Mandrell BN
Parents
Prospective Studies
The Journal Of Pediatrics
West NK
Windham JA