尽管灵性和存在问题是姑息治疗的核心领域之一，但在有生命限制和有生命威胁的儿童及其家庭中，很少收集到有关原始数据。现有的证据往往集中在癌症儿童的宗教方面。为了了解有生命限制和有生命威胁的儿童的灵性需求，进行了横断面的半结构化定性访谈研究，涉及儿童、家庭成员、医疗和社会保健专业人员。通过框架分析对逐字稿进行了分析。从英国的6家医院和3家儿童临终关怀中心招募有生命限制和生命威胁的儿童及其家庭成员、医疗和社会保健专业人员和儿科姑息治疗服务的委员。一共接受了106名参与者的访谈，其中包括26名儿童（5-17岁），53名家庭成员（儿童0-17岁的父母/照顾者和兄弟姐妹（5-17岁）），27名专业人员（医疗和社会保健专业人员和委员会的儿科姑息治疗）。主题包括：充分地生活，生命的意义和留下遗产，对未来的不确定性，生存的决心，接受或与未来抗争以及宗教的作用。孩子们年龄只有5岁就可以识别关于护理的灵性需求或关注内容。解决灵性问题对于提供以儿童和家庭为中心的姑息治疗是必不可少的。征询灵性问题可能使医疗和社会保健专业人员能够识别哪些事物可以支持和增强儿童及其家庭的有意义的生活和遗产。

Despite being a core domain of palliative care, primary data on spiritual and existential concerns has rarely been collected among children with life-limiting and life-threatening conditions and their families. Existing evidence has tended to focus on the religious aspects among children with cancer.To identify the spiritual needs of children with life-limiting and life-threatening conditions.Cross-sectional semi-structured, qualitative interview study with children, families and health and social care professionals. Verbatim transcripts were analysed using Framework analysis.Purposively sampled children with life-limiting and life-threatening conditions, their parents and siblings, health and social care professionals recruited from six hospitals and three children's hospices in the UK, and commissioners of paediatric palliative care services recruited through networks and a national charity.One hundred six participants were interviewed: 26 children (5-17 years), 53 family members (parents/carers of children 0-17 years and siblings (5-17 years)), 27 professionals (health and social care professionals and commissioners of paediatric palliative care). Themes included: living life to the fullest, meaning of life and leaving a legacy, uncertainty about the future, determination to survive, accepting or fighting the future and role of religion. Children as young as 5 years old identified needs or concerns in the spiritual domain of care.Addressing spiritual concerns is essential to providing child- and family-centred palliative care. Eliciting spiritual concerns may enable health and social care professionals to identify the things that can support and enhance a meaningful life and legacy for children and their families.