Roach Anna, Braybrook Debbie, Marshall Steve
Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London, London, UK.
Palliat Med. 2021 Mar;35(3):621-624. doi: 10.1177/0269216320976035. Epub 2021 Jan 12.
The importance of actively involving patient and public members throughout the different stages of palliative care and health research projects is widely acknowledged, however patient and public involvement work rarely considers insight from children and young people. Although this is becoming increasingly recognised in other areas of research, there is currently no structured guidance on how to best involve children and young people in palliative care research.
To plan and deliver a Young People's Advisory Group in palliative care and health research at a secondary school.
Attending an after-school 'Health and Social Research Methods Club' for 11 weeks benefitted children and researchers. Children were taught about data collection methods, data analysis and ethics in health research and used these skills to provide valuable feedback which has been implemented in current palliative care research projects. Children took part in considered discussions around palliative care topics and enjoyed attending the group.
This project has equipped researchers with skills and provided a structured template for future Young People's Advisory Groups, ensuring the unique voices of children and young people are considered and valued in future palliative care research.
在姑息治疗和健康研究项目的不同阶段积极让患者和公众成员参与其中的重要性已得到广泛认可，然而患者和公众参与工作很少考虑儿童和年轻人的见解。尽管这一点在其他研究领域越来越受到认可，但目前对于如何最好地让儿童和年轻人参与姑息治疗研究尚无结构化指导。
在一所中学规划并成立一个姑息治疗和健康研究青年咨询小组。
参加为期11周的课后“健康与社会研究方法俱乐部”使儿童和研究人员都受益。孩子们学习了健康研究中的数据收集方法、数据分析和伦理知识，并运用这些技能提供了宝贵的反馈意见，这些意见已在当前的姑息治疗研究项目中得到应用。孩子们围绕姑息治疗主题进行了深入讨论，并喜欢参加该小组。
该项目为研究人员提供了技能，并为未来的青年咨询小组提供了结构化模板，确保在未来的姑息治疗研究中考虑并重视儿童和年轻人的独特声音。
