Mitchell Sarah J, Slowther Anne-Marie, Coad Jane, Khan Dena, Samani Mohini, Dale Jeremy
Department of Oncology and Metabolism, University of Sheffield, Sheffield, UK.
Warwick Medical School, University of Warwick, Coventry, UK.
Palliat Med. 2021 Apr;35(4):793-798. doi: 10.1177/0269216321999301. Epub 2021 Mar 17.
The active involvement of patients and the public in the design and conduct of research (Patient and Public Involvement) is important to add relevance and context. There are particular considerations for involving children and young people in research in potentially sensitive and emotional subject areas such as palliative care.
To evaluate the experiences of young people of Patient and Public Involvement for a paediatric palliative care research study.
Anonymous written feedback was collected from group members about their experiences of Patient and Public Involvement in a paediatric palliative care research study. An inductive thematic analysis of the feedback was conducted using NVivo.
SETTING / PARTICIPANTS: Young people aged 12-22 years who were members of existing advisory groups at a children's hospital, hospice and the clinical research network in the West Midlands, UK.
Feedback was provided by 30 young people at three meetings, held between December 2016 and February 2017. Three themes emerged: (1) Involvement: Young people have a desire to be involved in palliative care research, and recognise the importance of the subject area.(2) Impact: Researchers should demonstrate the impact of the involvement work on the research, by regularly providing feedback. (3) Learning: Opportunities to learn both about the topic and about research more widely were valued.
Young people want to be involved in palliative care research, and recognise its importance. A continuous relationship with the researcher throughout the study, with clear demonstration of the impact that their input has on the research plans, are important.
患者和公众积极参与研究的设计与实施（患者及公众参与）对于增强研究的相关性和背景意义十分重要。在诸如姑息治疗等潜在敏感且涉及情感的主题领域让儿童和年轻人参与研究，存在一些特殊考量。
评估年轻人参与一项儿科姑息治疗研究中患者及公众参与环节的体验。
从小组成员处收集关于他们参与一项儿科姑息治疗研究中患者及公众参与环节体验的匿名书面反馈。使用NVivo软件对反馈进行归纳主题分析。
背景/参与者：年龄在12至22岁之间、身为英国西米德兰兹郡一家儿童医院、临终关怀机构及临床研究网络现有咨询小组成员的年轻人。
2016年12月至2017年2月期间召开的三次会议上，30名年轻人提供了反馈。出现了三个主题：（1）参与：年轻人渴望参与姑息治疗研究，并认识到该主题领域的重要性。（2）影响：研究人员应通过定期提供反馈，展示参与工作对研究的影响。（3）学习：有机会更广泛地了解该主题及研究受到重视。
年轻人希望参与姑息治疗研究，并认识到其重要性。在整个研究过程中与研究人员保持持续的关系，并清楚展示他们的投入对研究计划产生的影响，这很重要。
