Mascarenhas Dwayne, Goyal Medha, Nanavati Ruchi
Department of Neonatology, Seth GS Medical College & King Edward Memorial Hospital, Mumbai, India.
Paediatr Int Child Health. 2022 Feb;42(1):22-28. doi: 10.1080/20469047.2022.2089821. Epub 2022 Jun 21.
Neonatal palliative care (NPC) aims to prevent and relieve the suffering of neonates who are not going to recover. Although an integral part of neonatal care, it remains in nascent stages in many parts of the world.
To describe neonatologists' level of knowledge and understanding of NPC, and to describe current practices and barriers to its delivery.
The study, a cross-sectional web-based national survey, was undertaken between 2019 and 2020. A structured form of 22 questions about NPC was completed by neonatologists across level III neonatal intensive care units in India.
Of the 145 questionnaires sent out, 65 responses were returned (44.8%). The participating units were in both public (38.5%) and private/corporate hospitals (61.5%). The concept of NPC was known to 90.8%, and 93.8% could identify conditions necessitating palliation. However, 81.5% of units lacked a palliative team, and few had teams of only neonatologists and neonatal nurses. Only 10.8% of the units had a structured policy, but none addressed all aspects of neonatal palliation. The creation of memories by parents spending time with their neonate (38.9%), photography (75.9%), footprints (13%) or collecting memorabilia was allowed at many centres. Frequently encountered barriers included inadequate knowledge (16.9%), poor infrastructure (21.5%), inadequate human resources (24.6%) and a lack of structured guidelines and legal support (15.4%).
This is the first study to highlight a large gap in neonatal end-of-life care in India and it reflects an urgent need to facilitate its incorporation into routine care.
NICU: neonatal intensive care unit; NPC: neonatal palliative care.
新生儿姑息治疗（NPC）旨在预防和减轻无法康复的新生儿的痛苦。尽管它是新生儿护理的一个组成部分，但在世界许多地区仍处于起步阶段。
描述新生儿科医生对NPC的知识和理解水平，并描述当前的实践情况以及实施过程中的障碍。
该研究于2019年至2020年进行，是一项基于网络的全国性横断面调查。印度三级新生儿重症监护病房的新生儿科医生完成了一份关于NPC的22个问题的结构化问卷。
共发放145份问卷，回收65份（44.8%）。参与调查的单位包括公立医院（38.5%）和私立/企业医院（61.5%）。90.8%的人了解NPC的概念，93.8%的人能够识别需要姑息治疗的情况。然而，81.5%的单位没有姑息治疗团队，只有少数单位有仅由新生儿科医生和新生儿护士组成的团队。只有10.8%的单位有结构化政策，但没有一个政策涵盖新生儿姑息治疗的所有方面。许多中心允许家长与新生儿共度时光以留下回忆（38.9%）、拍照（75.9%）、留脚印（13%）或收集纪念品。常见的障碍包括知识不足（16.9%）、基础设施差（21.5%）、人力资源不足（24.6%）以及缺乏结构化指南和法律支持（15.4%）。
这是第一项强调印度新生儿临终关怀存在巨大差距的研究，反映出迫切需要促进将其纳入常规护理。
NICU：新生儿重症监护病房；NPC：新生儿姑息治疗
