Proceeding From a National Workshop and Future Directions for Pediatric Palliative Care Research

Jori F Bogetz; Jennifer M Snaman; Blyth Lord; Rebecca Kirch; Abby R Rosenberg

doi:10.1016/j.jpainsymman.2026.02.024

Proceeding From a National Workshop and Future Directions for Pediatric Palliative Care Research

J Pain Symptom Manage. 2026 Mar 9:S0885-3924(26)00089-8. doi: 10.1016/j.jpainsymman.2026.02.024. Online ahead of print.

Authors

Jori F Bogetz¹, Jennifer M Snaman², Blyth Lord³, Rebecca Kirch⁴, Abby R Rosenberg²

Affiliations

¹ Division of Bioethics and Palliative Care (J.F.B.), Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA; Center for Clinical and Translational Research (J.F.B.), Seattle Children's Research Institute, Seattle, Washington, USA. Electronic address: jori.bogetz@seattlechildrens.org.
² Department of Supportive Oncology (J.M.S., A.R.R.), Dana Farber Cancer Institute, Boston, Massachusetts, USA; Department of Pediatrics (J.M.S., A.R.R.), Boston Children's Hospital, Boston, Massachusetts, USA; Department of Pediatrics (J.M.S., A.R.R.), Harvard Medical School, Boston, Massachusetts, USA.
³ Courageous Parents Network (B.L.), Newton, Massachusetts, USA.
⁴ Executive Vice President of Policy and Programs (R.K.), National Patient Advocate Foundation (NPAF), Hampton, Virginia, USA.

PMID: 41806933
DOI: 10.1016/j.jpainsymman.2026.02.024

Abstract

The National Palliative Care Research Center (NPCRC) was founded in 2005 with the goal of strengthening the evidence base and developing research scholars in the field of palliative care. Given its accomplishments and adding extensively to the literature regarding the science of PPC, plans to sunset NPCRC occurred in 2025. At the final NPCRC Kathleen Foley Research Retreat in October 2025, a group of pediatric palliative care (PPC) researchers and advocates convened a workshop to discuss their vision for the next 25 years. After reviewing the progress that this young field has achieved since its founding, participants identified priorities for the future of PPC research during small group discussions. The discussion centered on three main questions: (1) who has been a part of PPC research and whose voices are missing, (2) what key research has been done in the field and what should be prioritized going forward, and (3) how can we apply rigorous and innovative methods to further the science of PPC? Using an established method for collaborative dialogue which included rotations through each of the facilitated small groups, the full group came together to report out key topics, expand and clarify findings, and place the discussion in the context of future research to inform policy and advocacy to improve the care of children with serious illness and their families. This paper describes the workshop proceedings and outlines important next steps for the future of PPC research.

Keywords: Pediatrics; advocacy; research.