Martin House Research Centre, Department of Health Sciences, University of York, York, UK.
Palliat Med. 2023 Mar;37(3):355-371. doi: 10.1177/02692163231154300. Epub 2023 Feb 24.
Worldwide, around 21 million children would benefit from palliative care and over 7 million babies and children die each year. Whilst provision of paediatric palliative care is advancing, there major gaps between what should be done, and what is being done, in clinical practice. In 2017, the National Institute for Health and Care Excellence (NICE) introduced a quality standard, to standardise and improve children's palliative care in England. However, there is little evidence about what good experiences of palliative care for children are, and how they relate to the quality standard for end-of-life care.
This study explored how the NICE quality standard featured in parental experiences of palliative care for children to understand what 'good' palliative care is.
Qualitative study, employing in-depth, telephone and video-call, semi-structured interviews. Data were analysed using thematic analysis, informed by Appreciative Inquiry.
SETTING/PARTICIPANTS: Participants were parents of children and young people (aged 0-17 years) in England, who were receiving palliative care, and parents whose child had died.
Fourteen mothers and three fathers were interviewed. Seven were bereaved. Parents were recruited via four children's hospices, one hospital, and via social media. Good palliative care is co-led and co-planned with trusted professionals; is integrated, responsive and flexible; encompasses the whole family; and enables parents to not only care for, but also to parent their child to end of life.
Findings have implications for informing evidence based practice and clinical guidelines, overall improving experiences of care.
在全球范围内，约有 2100 万名儿童将受益于姑息治疗，每年有超过 700 万名婴儿和儿童死亡。虽然儿科姑息治疗的提供正在取得进展，但在临床实践中，仍存在应做和已做之间的重大差距。2017 年，英国国家卫生与保健卓越研究所（NICE）引入了一项质量标准，以规范和改善英格兰儿童姑息治疗。然而，关于儿童姑息治疗的良好体验以及它们与临终关怀质量标准的关系，几乎没有证据。
本研究探讨了 NICE 质量标准在儿童姑息治疗的父母体验中的作用，以了解什么是“好”的姑息治疗。
定性研究，采用深入的、电话和视频通话、半结构化访谈。数据分析采用主题分析，以欣赏性探究为指导。
地点/参与者：参与者是英格兰接受姑息治疗的儿童和青少年（0-17 岁）及其父母，以及其孩子已经死亡的父母。
采访了 14 位母亲和 3 位父亲。其中 7 位是丧亲者。父母通过 4 家儿童收容所、1 家医院以及社交媒体招募而来。良好的姑息治疗由值得信赖的专业人员共同领导和共同规划；是综合的、有响应能力的和灵活的；包括整个家庭；并使父母不仅能够照顾孩子，还能够陪伴孩子走到生命的尽头。
研究结果对告知循证实践和临床指南具有重要意义，总体上改善了护理体验。
