Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.
Royal Marsden NHS Foundation Trust, London, UK.
Eur J Pediatr. 2022 Oct;181(10):3739-3752. doi: 10.1007/s00431-022-04566-w. Epub 2022 Aug 12.
This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, other concerns, and care priorities of children and young people with life limiting and life-threatening conditions and their families. Participants were recruited from six hospitals and three children's hospices in the UK. Verbatim transcripts were analysed using framework analysis. A total of 106 participants were recruited: 26 children (5-17 years), 40 parents (of children 0-17 years), 13 siblings (5-17 years), 15 health and social care professionals, 12 commissioners. Participants described many inter-related symptoms, concerns, and care priorities impacting on all aspects of life. Burdensome symptoms included pain and seizures. Participants spoke of the emotional and social impacts of living with life-limiting conditions, such as being able to see friends, and accessing education and psychological support. Spiritual/existential concerns included the meaning of illness and planning for an uncertain future. Data revealed an overarching theme of pursuing 'normality', described as children's desire to undertake usual childhood activities. Parents need support with practical aspects of care to help realise this desire for normality.
Children with life-limiting conditions and their families experience a wide range of inter-related symptoms, concerns, and care priorities. A holistic, child-centred approach to care is needed, allowing focus on pursuit of normal childhood activities. Improvements in accessibility, co-ordination, and availability of health services are required to achieve this.
• Existing evidence regarding symptoms, concerns, and care priorities for children with life-limiting conditions is largely limited to proxy-reported data and those with a cancer diagnosis. • Child-centred care provision must be directed by children's perspectives on their priorities for care.
• Social and educational activities are more important to children with life-limiting conditions than their medical concerns. • A holistic approach to care is required that extends beyond addressing medical needs, in order to support children with life-limiting conditions to focus on pursuit of normal childhood activities.
本研究旨在确定患有生命终末期疾病儿童及其家庭的症状、关注点和护理重点。采用半结构式定性访谈研究，从多利益相关者的角度探讨患有生命终末期和危及生命疾病的儿童和青少年及其家庭的症状、其他关注点和护理重点。参与者从英国六家医院和三家儿童临终关怀机构招募。使用框架分析对逐字记录进行分析。共招募了 106 名参与者：26 名儿童（5-17 岁）、40 名父母（子女 0-17 岁）、13 名兄弟姐妹（5-17 岁）、15 名卫生和社会保健专业人员、12 名决策者。参与者描述了许多相互关联的症状、关注点和护理重点，这些症状、关注点和护理重点影响着生活的方方面面。包括疼痛和癫痫在内的负担沉重的症状。参与者谈到了与生命终末期疾病相关的情感和社会影响，例如能够见到朋友，以及获得教育和心理支持。精神/存在主义方面的担忧包括疾病的意义和对不确定未来的规划。研究结果揭示了一个主题，即追求“常态”，这被描述为儿童希望进行通常的儿童活动。父母需要在护理的实际方面得到支持，以帮助实现这种常态的愿望。
患有生命终末期疾病的儿童及其家庭经历了广泛的相互关联的症状、关注点和护理重点。需要采取以儿童为中心的整体护理方法，使重点关注追求正常的儿童活动。需要改善医疗服务的可及性、协调性和可用性，以实现这一目标。
• 现有关于生命终末期疾病儿童的症状、关注点和护理重点的证据主要限于代理报告的数据和癌症诊断。• 以儿童为中心的护理服务的提供必须以儿童对护理重点的看法为指导。
• 与医疗问题相比，社交和教育活动对患有生命终末期疾病的儿童更为重要。• 需要采取整体护理方法，不仅要满足医疗需求，还要支持患有生命终末期疾病的儿童专注于追求正常的儿童活动。
