Literature DB >> 24309611

What do parents want to know when considering autopsy for their child with cancer?

Lori Wiener1, Corinne Sweeney, Kristin Baird, Melinda S Merchant, Katherine E Warren, Geoffrey W Corner, Kailey E Roberts, Wendy G Lichtenthal.   

Abstract

Research has suggested that autopsy in pediatrics is a valued way for parents to better understand and process their child's death, yet physicians often express hesitancy in discussing this topic with parents. To better assist clinicians with initiating discussion about this often sensitive topic, the current study examined bereaved parents' preferences about the timing and content of the autopsy discussion as well as reasons for considering autopsy. This study explored the views of 30 parents who lost a child to a variety of malignancies between 6 months and 6 years ago. Results showed that 36.7% of parents recalled having a discussion about autopsy, and the vast majority of those who did not recall a discussion (89.5%) would have considered an autopsy if it had been discussed. The majority of participants in this study indicated their preference to have the first conversation about autopsy when it becomes clear that cure is no longer possible. Findings suggest that educating parents about the clinical, emotional, and potential research benefits of autopsy and tissue procurement will ultimately help them make informed decisions and understand the importance of autopsy in medical progress. The future research and clinical implications of these findings are discussed.

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Year:  2014        PMID: 24309611      PMCID: PMC4045660          DOI: 10.1097/MPH.0000000000000078

Source DB:  PubMed          Journal:  J Pediatr Hematol Oncol        ISSN: 1077-4114            Impact factor:   1.289


  20 in total

1.  Recommendations for end-of-life care in the intensive care unit: The Ethics Committee of the Society of Critical Care Medicine.

Authors:  R D Truog; A F Cist; S E Brackett; J P Burns; M A Curley; M Danis; M A DeVita; S H Rosenbaum; D M Rothenberg; C L Sprung; S A Webb; G S Wlody; W E Hurford
Journal:  Crit Care Med       Date:  2001-12       Impact factor: 7.598

2.  Perinatal pathology in the context of a clinical trial: attitudes of bereaved parents.

Authors:  C Snowdon; D R Elbourne; J Garcia
Journal:  Arch Dis Child Fetal Neonatal Ed       Date:  2004-05       Impact factor: 5.747

3.  Prospective collection of tissue samples at autopsy in children with diffuse intrinsic pontine glioma.

Authors:  Alberto Broniscer; Justin N Baker; Suzanne J Baker; Susan N Chi; J Russell Geyer; E Brannon Morris; Amar Gajjar
Journal:  Cancer       Date:  2010-10-01       Impact factor: 6.860

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

Authors:  Justin Nathaniel Baker; Jennifer A Windham; Pamela S Hinds; Jami S Gattuso; Belinda Mandrell; Poorna Gajjar; Nancy K West; Teresa Hammarback; Alberto Broniscer
Journal:  J Pediatr       Date:  2013-02-19       Impact factor: 4.406

5.  American Academy of Pediatrics. Committee on Bioethics and Committee on Hospital Care. Palliative care for children.

Authors: 
Journal:  Pediatrics       Date:  2000-08       Impact factor: 7.124

6.  Parental perspectives on end-of-life care in the pediatric intensive care unit.

Authors:  Elaine C Meyer; Jeffrey P Burns; John L Griffith; Robert D Truog
Journal:  Crit Care Med       Date:  2002-01       Impact factor: 7.598

7.  Hospital staff and family perspectives regarding quality of pediatric palliative care.

Authors:  Nancy A Contro; Judith Larson; Sarah Scofield; Barbara Sourkes; Harvey J Cohen
Journal:  Pediatrics       Date:  2004-11       Impact factor: 7.124

8.  Family perspectives on the quality of pediatric palliative care.

Authors:  Nancy Contro; Judith Larson; Sarah Scofield; Barbara Sourkes; Harvey Cohen
Journal:  Arch Pediatr Adolesc Med       Date:  2002-01

9.  Cross sectional survey of parents' experience and views of the postmortem examination.

Authors:  Judith Rankin; Chris Wright; Tom Lind
Journal:  BMJ       Date:  2002-04-06

10.  Parents' perspectives regarding a physician-parent conference after their child's death in the pediatric intensive care unit.

Authors:  Kathleen L Meert; Susan Eggly; Murray Pollack; K J S Anand; Jerry Zimmerman; Joseph Carcillo; Christopher J L Newth; J Michael Dean; Douglas F Willson; Carol Nicholson
Journal:  J Pediatr       Date:  2007-07       Impact factor: 4.406

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  7 in total

1.  Regret and unfinished business in parents bereaved by cancer: A mixed methods study.

Authors:  Wendy G Lichtenthal; Kailey E Roberts; Corinne Catarozoli; Elizabeth Schofield; Jason M Holland; Justin J Fogarty; Taylor C Coats; Lamia P Barakat; Justin N Baker; Tara M Brinkman; Robert A Neimeyer; Holly G Prigerson; Talia Zaider; William Breitbart; Lori Wiener
Journal:  Palliat Med       Date:  2020-02-05       Impact factor: 4.762

2.  Rapid autopsy of a patient with recurrent anaplastic ependymoma.

Authors:  Katharine Rae Lange; Cheryl Fischer; Prajwal Rajappa; Scott Connors; David Pisapia; Jeffrey P Greenfield; Himisha Beltran; Mark Rubin; Juan Miguel Mosquera; Yasmin Khakoo
Journal:  Palliat Support Care       Date:  2017-09-25

3.  Increasing value of autopsies in patients with brain tumors in the molecular era.

Authors:  Jared T Ahrendsen; Mariella G Filbin; Susan N Chi; Peter E Manley; Karen D Wright; Pratiti Bandopadhayay; Jessica R Clymer; Kee Kiat Yeo; Mark W Kieran; Robert Jones; Hart G Lidov; Keith L Ligon; Sanda Alexandrescu
Journal:  J Neurooncol       Date:  2019-09-30       Impact factor: 4.130

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

Authors:  Eden G Robertson; Claire E Wakefield; Maria Tsoli; Stewart J Kellie; Frank Alvaro; Andrew J Gifford; Martin A Weber; Michael Rodriguez; Maria Kirby; David S Ziegler
Journal:  Neurooncol Adv       Date:  2021-08-25

Review 5.  The under reporting of recruitment strategies in research with children with life-threatening illnesses: A systematic review.

Authors:  Briony F Hudson; Linda Jm Oostendorp; Bridget Candy; Victoria Vickerstaff; Louise Jones; Monica Lakhanpaul; Myra Bluebond-Langner; Paddy Stone
Journal:  Palliat Med       Date:  2016-09-08       Impact factor: 4.762

6.  Factors affecting uptake of postmortem examination in the prenatal, perinatal and paediatric setting.

Authors:  C Lewis; M Hill; O J Arthurs; C Hutchinson; L S Chitty; N J Sebire
Journal:  BJOG       Date:  2017-03-21       Impact factor: 6.531

7.  Why parents agree or disagree for minimally invasive tissue sampling (MITS) to identify causes of death in under-five children and stillbirth in North India: a qualitative study.

Authors:  Manoja Kumar Das; Narendra Kumar Arora; Pradeep Debata; Harish Chellani; Reeta Rasaily; Harsha Gaikwad; K R Meena; Gurkirat Kaur; Prikanksha Malik; Shipra Joshi; Mahisha Kumari
Journal:  BMC Pediatr       Date:  2021-11-17       Impact factor: 2.125

  7 in total

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