ABSTRACT

Background

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.

Aim

To describe neonatologists’ level of knowledge and understanding of NPC, and to describe current practices and barriers to its delivery.

Methods

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.

Results

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%).

Conclusion

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.

Abbreviations

NICU: neonatal intensive care unit; NPC: neonatal palliative care

中文翻译：

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新生儿姑息治疗实践：印度的观点

摘要

背景

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。尽管是新生儿护理不可分割的一部分，但它在世界许多地方仍处于起步阶段。

目标

描述新生儿科医生对 NPC 的知识水平和理解程度，并描述目前的实践和对其实施的障碍。

方法

该研究是一项基于网络的横断面全国调查，于 2019 年至 2020 年期间进行。印度三级新生儿重症监护病房的新生儿科医生完成了关于 NPC 的 22 个问题的结构化表格。

结果

在发出的 145 份问卷中，回收了 65 份（44.8%）。参与单位包括公立（38.5%）和私立/公司医院（61.5%）。90.8% 的人知道 NPC 的概念，93.8% 的人可以识别需要姑息治疗的情况。然而，81.5% 的单位缺乏姑息治疗团队，很少有仅由新生儿科医生和新生儿护士组成的团队。只有 10.8% 的单位制定了结构化政策，但没有一个单位涉及新生儿姑息治疗的所有方面。许多中心允许父母通过陪伴新生儿（38.9%）、摄影（75.9%）、脚印（13%）或收集纪念品来创造记忆。经常遇到的障碍包括知识不足 (16.9%)、基础设施薄弱 (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%)。

结论

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，它反映了促进将其纳入常规护理的迫切需要。

缩写

NICU：新生儿重症监护室；NPC：新生儿姑息治疗