Roberts Center for Pediatric Research, The Children's Hospital of Philadelphia, Room 11123, 3401 Civic Center Boulevard, Philadelphia, PA, 19104, USA.
Texas Children's Hospital, Houston, TX, USA.
Support Care Cancer. 2018 Sep;26(9):3249-3256. doi: 10.1007/s00520-018-4190-5. Epub 2018 Apr 7.
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.
患有晚期癌症的儿童在去世前往往未被转介至姑息治疗或临终关怀机构，或仅在临近死亡时才被转介。本项目的目的是了解儿科肿瘤团队成员对姑息治疗的看法，与团队成员合作修改和定制三个关于启动姑息治疗的独立跨学科团队干预措施，并评估这种合作方法的可行性。
我们使用了经验基础设计（EBCD）的改良版本，涉及儿科姑息治疗团队成员和三个跨学科儿科肿瘤团队（骨髓移植、神经肿瘤学和实体瘤），以审查和调整三个基于团队的干预措施的材料。11 名儿科肿瘤团队成员参加了四次设计会议，讨论他们在启动姑息治疗方面的经验，并审查拟议的干预措施，包括患者病例研究、处理不确定性和负面情绪的技巧、角色模糊、系统层面的障碍以及团队沟通和协作。
设计过程表明，参与者强烈支持姑息治疗，不同团队的成员对适合他们团队的材料有偏好，尽管参与者报告对姑息治疗的时间安排感到沮丧，但他们难以提出如何改变当前做法。
本项目证明了与儿科肿瘤临床医生合作制定姑息治疗介绍干预措施的可行性。该项目的程序和结果将在线发布，以便其他机构可以将其用作根据自身需求开发类似干预措施的模型。
