The INCLEN Trust International, New Delhi, India.
Department of Pediatrics, Safdarjung Hospital and Vardhman Mahavir Medical College, New Delhi, India.
PLoS One. 2021 Mar 18;16(3):e0248661. doi: 10.1371/journal.pone.0248661. eCollection 2021.
Parents of dying children face unique challenge and expect compassionate support from health care providers (HCPs). This study explored the experiences of the parents and HCPs about the end-of-life care and breaking bad news and related positive and negative factors in Indian context.
This qualitative exploratory study was conducted at paediatrics department of a tertiary care hospital in Delhi. In-depth interviews with the parents (n = 49) and family members (n = 21) of the children died at the hospital and HCPs (6 doctors, 6 nurses and 4 support staffs) were conducted. Also events and communication around death of eight children were observed. Data were inductively analysed using thematic content analysis method to identify emerging themes and codes.
Doctors were the lead communicators. Majority of parents perceived the attitude, communication and language used as by resident doctors as brief, insensitive and sometimes inappropriate or negative. They perceived that the attitude and communication by senior doctor's as empathetic, positive and complete. Parents recalled the death declaration by resident doctors as non-empathetic, blunt and cold. Most parents received no emotional support from HCPs during and after death of their child. All doctors expressed that death of their patients affected them and their emotions, which they coped through different activities. The overcrowded wards, high workload, infrastructural limitation and no formal communication training added to the emotional stress of the HCPs.
Majority of the communication by the HCPs during the hospitalisation and end-of-life period were perceived as suboptimal by the parents. The HCPs were emotionally affected and faced end-of-life communication challenges. The study highlights the communication by HCPs and support for parents during the end-of-life communication and breaking bad news. It suggests adoption of context specific communication protocol and materials and training of HCPs in communication to improve the quality of care.
临终儿童的父母面临独特的挑战，并期望得到医疗保健提供者（HCP）的同情和支持。本研究在印度背景下探讨了父母和 HCP 对临终关怀和传递坏消息的体验，以及相关的积极和消极因素。
这项定性探索性研究在德里一家三级保健医院的儿科进行。对在该医院死亡的儿童的父母（n=49）和家属（n=21）以及 HCP（6 名医生、6 名护士和 4 名支持人员）进行了深入访谈。还观察了 8 名儿童死亡时的事件和沟通情况。使用主题内容分析法对数据进行归纳分析，以确定出现的主题和代码。
医生是主要的沟通者。大多数父母认为住院医生的态度、沟通和语言方式简单、不敏感，有时不恰当或消极。他们认为资深医生的态度和沟通方式是富有同情心、积极和全面的。父母回忆起住院医生宣布死亡时的态度是非同情心的、生硬和冷漠的。大多数父母在孩子去世期间和之后都没有得到 HCP 的情感支持。所有医生都表示，他们的患者去世会影响他们自己的情绪，他们通过不同的活动来应对。病房拥挤、工作量大、基础设施限制和没有正式的沟通培训，都增加了 HCP 的情绪压力。
父母认为 HCP 在住院和临终期间的大多数沟通都不理想。HCP 受到了情感上的影响，并面临临终沟通的挑战。该研究强调了 HCP 在临终沟通和传递坏消息期间对父母的沟通和支持。它建议采用特定于情境的沟通协议和材料，并对 HCP 进行沟通培训，以提高护理质量。
