Department of Health Sciences, University of York, York, North Yorkshire, UK
Martin House Research Centre, University of York, York, UK.
Arch Dis Child. 2021 Jul;106(7):693-697. doi: 10.1136/archdischild-2020-320353. Epub 2020 Nov 18.
Increasingly the views of young people are sought when improving healthcare; however, it is unclear how they shape policy or practice. This paper presents a consultation with young people commissioned by the National Institute for Health and Care Excellence (NICE) to inform clinical guidelines for paediatric palliative care (end-of-life care for infants, children and young people).
The consultation involved qualitative thematic analysis of data from 14 young people (aged 12-18 years) with a life-limiting or life-threatening condition who took part in focus groups or interviews. The topics explored were predefined by NICE: information and communication; care planning; place of care; and psychological care. Data collection consisted of discussion points and activities using visual cues and was informed by a pilot consultation group with five young adults (aged 19-24 years). Findings were shared with participants, and feedback helped to interpret the findings.
Four overarching themes were identified, cutting across the predetermined topic areas: being treated as individuals with individual needs and preferences; quality of care more important than place; emotional well-being; and living as a young person. Importantly, care planning was viewed as a tool to support living well and facilitate good care, and the young people were concerned less about where care happens but who provides this.
Young people's priorities differ from those of parents and other involved adults. Incorporating their priorities within policy and practice can help to ensure their needs and preferences are met and relevant research topics identified.
在改善医疗保健服务时，越来越多地征求年轻人的意见；然而，目前尚不清楚他们如何影响政策或实践。本文呈现了国家卫生与保健卓越研究所（NICE）委托进行的一项针对年轻人的咨询意见，旨在为儿科姑息治疗（为患有危及生命疾病的婴儿、儿童和青少年提供临终关怀）的临床指南提供信息。
该咨询采用了 14 名患有危及生命疾病的年轻人（12-18 岁）的焦点小组或访谈的定性主题分析数据。NICE 预先确定了探讨的主题：信息和沟通；护理计划；护理地点；以及心理护理。数据收集包括使用视觉提示的讨论点和活动，这些活动是通过一个由五名年轻成年人（19-24 岁）组成的试点咨询小组得到的信息。研究结果与参与者分享，并通过反馈帮助解释研究结果。
确定了四个贯穿所有主题的主题，涵盖了预先确定的主题领域：被视为具有个人需求和偏好的个体；护理质量比地点更重要；情绪健康；以及作为年轻人生活。重要的是，护理计划被视为支持良好生活和促进良好护理的工具，年轻人不太关心护理发生的地点，而是关心谁提供护理。
年轻人的优先事项与父母和其他相关成年人不同。将他们的优先事项纳入政策和实践中，可以帮助确保满足他们的需求和偏好，并确定相关的研究课题。
