School of Psychology and Counselling, Queensland University of Technology, Brisbane, QLD, Australia.
Institute of Health and Biomedical Innovation, Queensland University of Technology, Brisbane, QLD, Australia.
Palliat Med. 2020 Mar;34(3):291-299. doi: 10.1177/0269216319888988. Epub 2019 Nov 22.
Effective communication is a cornerstone of quality paediatric palliative care. Families report struggling, however, to know what to discuss, with whom, and when. Although question prompt lists exist for adult palliative care, they do not suit the unique circumstances of paediatric palliative care.
To develop a prompt list suitable for paediatric palliative care.
Underpinned by Delphi methodology, a six-phase procedure was adopted: (1) drafting items based on the findings of a literature review, (2) condensing the list of items based on group discussion, (3) refining items based on a survey of expert healthcare professionals, (4) additional refining of items based on another survey of professionals, (5) further refining of items based on cognitive interviews with family members, and (6) final review by healthcare professional and family member groups.
Three participant groups were involved during various phases: (1) members of an Australasian paediatric palliative care national reference group, (2) healthcare professionals associated with a local paediatric palliative care service, and (3) family members who were users of the same local service.
Through multi-phase consultation across participant groups, the draft question prompt list was refined progressively to 28 items, split across two booklets to allow end-of-life items to be provided separately, and reconceptualised as a prompt list rather than a prompt list.
By involving representatives of major stakeholder groups, this study has facilitated the design of a prompt list suited to the circumstances of paediatric palliative care. Future research should trial the effectiveness of this resource.
有效的沟通是儿童姑息治疗质量的基石。然而，家庭报告说，他们很难知道讨论什么、与谁讨论以及何时讨论。虽然成人姑息治疗有问题提示清单，但它们并不适合儿童姑息治疗的特殊情况。
开发适合儿童姑息治疗的提示清单。
在 Delphi 方法的基础上，采用了六阶段程序：（1）根据文献综述的结果起草项目，（2）根据小组讨论压缩项目清单，（3）根据对专业医疗保健专业人员的调查完善项目，（4）根据专业人员的另一项调查进一步完善项目，（5）根据家庭成员的认知访谈进一步完善项目，以及（6）医疗保健专业人员和家庭成员小组的最终审查。
在各个阶段涉及三个参与者群体：（1）澳大拉西亚儿科姑息治疗国家参考小组的成员，（2）与当地儿科姑息治疗服务相关的医疗保健专业人员，以及（3）同一当地服务的使用者的家庭成员。
通过多阶段的参与者群体协商，草案问题提示清单逐步完善到 28 个项目，分为两册，以便单独提供临终关怀项目，并重新构想为提示清单而不是提示清单。
通过让主要利益相关者群体的代表参与，本研究促进了适合儿童姑息治疗情况的提示清单的设计。未来的研究应试验该资源的有效性。
