title: Bereaved parents' intentions and suggestions about research autopsies in children with lethal brain tumors.
abstract: OBJECTIVE
  To determine bereaved parents' perceptions about participating in autopsy-related research and to elucidate their suggestions about how to improve the process.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors: 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
authors: Justin Nathaniel
authors: JN
authors: Baker
authors: Jennifer A
authors: JA
authors: Windham
authors: Pamela S
authors: PS
authors: Hinds
authors: Jami S
authors: JS
authors: Gattuso
authors: Belinda
authors: B
authors: Mandrell
authors: Poorna
authors: P
authors: Gajjar
authors: Nancy K
authors: NK
authors: West
authors: Teresa
authors: T
authors: Hammarback
authors: Alberto
authors: A
authors: Broniscer
mesh_terms: D001290:Attitude; D001344:Autopsy; D001601:Bereavement; D035843:Biomedical Research; D001932:Brain Neoplasms / Q000473:pathology*; D002648:Child; D006801:Humans; D033182:Intention; D010290:Parents / Q000523:psychology*; D011446:Prospective Studies
keywords: DIPG; Diffuse intrinsic pontine glioma