Description
Reference code
Name and location of repository
Level of description
Collection
Title
Pediatric Palliative Care Oral History Project
Date(s)
- 2019 (Creation)
Extent
Name of creator
Biographical history
Bryan Sisk, MD, MSCI is an Assistant Professor in Pediatric Hematology and Oncology and an Assistant Professor in General Medical Sciences as a member of the Bioethics Research Center at Washington University in St. Louis. He completed medical school at the Cleveland Clinic Lerner College of Medicine at Case Western Reserve University. He completed his clinical training at St. Louis Children’s Hospital and Washington University School of Medicine.
Dr. Sisk was a clinical fellow in pediatric hematology and oncology when he initiated this Pediatric Palliative Care Oral History Project. As a trainee, Dr. Sisk had a strong interest in palliative care, the approach to the suffering of children, and the history of medicine. Prior to initiating this project, Dr. Sisk performed an in-depth review of the development of pediatric palliative care as a discipline and philosophy. This research culminated in a publication entitled, “Response to Suffering of the Seriously Ill Child: A History of Palliative Care for Children” in the journal Pediatrics. However, this historical review was limited to textbooks and publications. It lacked the personal experience of caring for these children and inspiring the development of a new clinical discipline. Inspired by David Clark’s oral history of the adult hospice movement, Dr. Sisk began to plan this pediatric oral history project.
Of note, this collection of oral histories is incomplete, and many important figures have not (yet) been interviewed. Dr. Sisk’s goal is to continue adding to this collection create a rich repository of personal insights and wisdom from leaders who changed the field of pediatrics.
Scope and content
In this oral history project, Dr. Bryan Sisk performed interviews with 35 individuals with notable roles in the development of pediatric palliative care as a discipline and a philosophy. Dr. Sisk was a clinical fellow in pediatric hematology and oncology when he developed this project and performed the interviews. He had rigorous training in qualitative research and a strong interest in history related to children’s pain and suffering. Selection of participants was based on review of the historical literature for a prior publication related to this area (*). Additionally, Dr. Sisk asked interviewees for recommendations for other potential participants. During interviews, he followed an interview guide but he also allowed the interviewee to redirect the conversation.
These interviews were all recorded remotely, either via telephone or video-conferencing software. Audio files were professionally transcribed and proofed for grammar and accuracy. Interviewees were allowed to review these transcripts and make grammatical corrections. Also, interviewees were allowed to suggest additions or retractions from the transcript to ensure their meaning was clear. We marked all additions with brackets and all retractions with ellipses. In consultation with the Washington University Institutional Review Board (IRB), this project was not deemed to be human subjects research, and thus was not subject to review by the IRB.
(*) Sisk, Bryan A., et al. "Response to Suffering of the Seriously Ill Child: A History of Palliative Care for Children." Pediatrics, Volume 145, Number 1, January 2020, e20191741.
System of arrangement
Conditions governing access
All transcripts for the oral histories associated with this project are open and accessible for research.
All audio recordings may be made available to researchers if a request is made to the archivists at the Bernard Becker Medical Library.
Any additional access restrictions are specific to individual oral histories within this collection, and those restriction will be noted in the database record.
Technical access
Conditions governing reproduction
Users of the collection should read and abide by the Rights and Permissions guidelines at the Bernard Becker Medical Library Archives.
Users of the collection who wish to cite items from this collection, in whole or in part, in any form of publication must request, sign, and return a Statement of Use form to the Archives.
For detailed information regarding use of this collection, contact the Archives and Rare Book Department of the Becker Library (arb@wusm.wustl.edu).
Preferred Citation:
Item description, Reference Code, Bernard Becker Medical Library Archives, Washington University in St. Louis.
Languages of the material
- English
Scripts of the material
- Latin
Language and script notes
Finding aids
Custodial history
Gift of Bryan A. Sisk, MD, 2021.
Immediate source of acquisition
Appraisal, destruction and scheduling information
Accruals
Existence and location of originals
Existence and location of copies
Related archival materials
Related descriptions
General note
The success of this project is owed in great part to continued mentorship and support from Prof. James DuBois and Dr. Justin Baker. Additionally, early visions of this project were supported by Dr. Chris Feudtner, Prof. Pam Hinds, Dr. Jenny Mack, and Dr. Joanne Wolfe. Also, this project would have never been possible without the support and time of these 35 interviewees who have been so influential in developing the field of pediatric palliative care.
Specialized notes
Alternative identifier(s)
Rules or conventions
"Describing Archives: A Content Standard, Second Edition (DACS), 2013."
Sources used
Archivist's note
© Copyright 2021 Bernard Becker Medical Library Archives. All rights reserved.
Subject access points
Place access points
Name access points
- Anand, Kanwaljeet S. (Subject)
- Armstrong-Dailey, Ann (Subject)
- Bluebond-Langner, Myra (Subject)
- Carter, Brian S. (Subject)
- Connor, Stephen (Subject)
- Corr, Charles (Subject)
- Dangel, Tomasz (Subject)
- Davies, Betty (Subject)
- Dominica, Frances (Subject)
- Faulkner, Kathleen (Subject)
- Ferrell, Betty (Subject)
- Frager, Gerri (Subject)
- Friebert, Sarah (Subject)
- Friedrichsdorf, Stefan (Subject)
- Goldman, Ann (Subject)
- Hain, Richard (Subject)
- Hays, Ross (Subject)
- Hinds, Pamela (Subject)
- Huff, Susan (Subject)
- Krane, Elliot (Subject)
- Levetown, Marcia (Subject)
- Liben, Stephen (Subject)
- Lord, Blyth (Subject)
- Marston, Joan (Subject)
- Martinson, Ida (Subject)
- Mount, Balfour (Subject)
- Orloff, Stacy (Subject)
- Papadatou, Danai (Subject)
- Remke, Stacy (Subject)
- Schechter, Neil (Subject)
- Schumacher, Donald (Subject)
- Sourkes, Barbara (Subject)
- Stephanson, Eric (Subject)
- Walco, Gary (Subject)
- Wolfe, Joanne (Subject)