Bedendo Andre, Papworth Andrew, Beresford Bryony, Phillips Bob, Vasudevan Chakrapani, Lake Walker Gabriella, Weatherly Helen, Feltbower Richard, Hinde Sebastian, Hewitt Catherine Elizabeth, Murtagh Fliss, Noyes Jane, Hackett Julia, Hain Richard, Oddie Sam, Subramanian Gayathri, Haynes Andrew, Fraser Lorna
Department of Health Sciences, University of York, Heslington,York, UK.
Social Policy Research Unit, School for Business and Society, University of York, York, UK
BMJ Support Palliat Care. 2025 Feb 26;15(2):221-230. doi: 10.1136/spcare-2023-004673.
To describe end of life care in settings where, in the UK, most children die; to explore commonalities and differences within and between settings; and to test whether there are distinct, alternative models of end of life care.
An online survey of UK neonatal units (NNUs), paediatric intensive care units (PICUs) and children/young people's cancer principal treatment centres (PTCs) collected data on aspects of service organisation, delivery and practice relevant to end of life outcomes or experiences (referred to as the core elements of end of life care) across three domains: care of the child, care of the parent and bereavement care.
91 units/centres returned a survey (37% response rate). There was variation within and between settings in terms of whether and how core elements of end of life care were provided. PTCs were more likely than NNUs and PICUs to have palliative care expertise strongly embedded in the multidisciplinary team (MDT), and to have the widest range of clinical and non-clinical professions represented in the MDT. However, bereavement care was more limited. Many settings were limited in the practical and psychosocial-spiritual care and support available to parents.
Children at end of life, and families, experience differences in care that evidence indicates matter to them and impact outcomes. Some differences appear to be related to the type of setting. Subsequent stages of this research (the ENHANCE study) will investigate the relative contribution of these core elements of end of life care to child/parent outcomes and experiences.
描述在英国大多数儿童死亡的环境中的临终关怀；探索不同环境内部以及不同环境之间的共性与差异；并检验是否存在独特的、可供选择的临终关怀模式。
对英国新生儿重症监护病房（NNUs）、儿科重症监护病房（PICUs）以及儿童/青少年癌症主要治疗中心（PTCs）进行在线调查，收集与临终结局或体验相关的服务组织、提供和实践方面的数据（称为临终关怀的核心要素），涵盖三个领域：儿童护理、家长护理和丧亲护理。
91个单位/中心回复了调查（回复率为37%）。在是否提供以及如何提供临终关怀核心要素方面，不同环境内部以及不同环境之间存在差异。与新生儿重症监护病房和儿科重症监护病房相比，癌症主要治疗中心更有可能在多学科团队（MDT）中深度融入姑息治疗专业知识，并且多学科团队中临床和非临床专业的范围最广。然而，丧亲护理更为有限。许多环境在为家长提供的实际护理以及心理社会 - 精神护理和支持方面存在限制。
临终儿童及其家庭所接受的护理存在差异，有证据表明这些差异对他们很重要并会影响结局。一些差异似乎与环境类型有关。本研究的后续阶段（ENHANCE研究）将调查临终关怀这些核心要素对儿童/家长结局和体验的相对贡献。
