The codesign of an interdisciplinary team-based intervention regarding initiating palliative care in pediatric oncology
Children with advanced cancer are often not referred to palliative or hospice care before they die or are only referred close to the child’s death. The goals of the current project were to learn about pediatric oncology team members’ perspectives on palliative care, to collaborate with team members to modify and tailor three separate interdisciplinary team-based interventions regarding initiating palliative care, and to assess the feasibility of this collaborative approach.
We used a modified version of experience-based codesign (EBCD) involving members of the pediatric palliative care team and three interdisciplinary pediatric oncology teams (Bone Marrow Transplant, Neuro-Oncology, and Solid Tumor) to review and tailor materials for three team-based interventions. Eleven pediatric oncology team members participated in four codesign sessions to discuss their experiences with initiating palliative care and to review the proposed intervention including patient case studies, techniques for managing uncertainty and negative emotions, role ambiguity, system-level barriers, and team communication and collaboration.
The codesign process showed that the participants were strong supporters of palliative care, members of different teams had preferences for different materials that would be appropriate for their teams, and that while participants reported frustration with timing of palliative care, they had difficulty suggesting how to change current practices.
The current project demonstrated the feasibility of collaborating with pediatric oncology clinicians to develop interventions about introducing palliative care. The procedures and results of this project will be posted online so that other institutions can use them as a model for developing similar interventions appropriate for their needs.
KeywordsPediatric oncology Pediatric palliative care Experience-based codesign Interdisciplinary collaboration Team interventions Uncertainty Role ambiguity Communication
We thank all pediatric oncology team members who participated in this study. We thank Pamela G. Nathanson, MBE and Theodore E. Schall, MBE MSW for their comments on the manuscript.
Funding for this project was provided by the National Cancer Institute Grant R21CA198049-02.
Compliance with ethical standards
Conflict of interest
The authors declare that they have no conflict of interest.
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