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.