Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute (NCI), National Institutes of Health (NIH), Bethesda, MD.
Division of Hematology/Oncology, Department of Pediatrics, University of Washington School of Medicine, Seattle, WA.
Palliat Support Care. 2021 Apr;19(2):129-134. doi: 10.1017/S1478951521000225.
Parents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to provide comfort. For providers, shifts in healthcare provision, communication formats, and support offerings for families facing distress or loss during the pandemic may promote providers' moral distress. This study aimed to define the ways that the COVID-19 pandemic has impacted end-of-life care and approach to bereavement care in pediatric palliative care (PPC).
The Palliative Assessment of Needed DEvelopments and Modifications In the Era of Coronavirus (PANDEMIC) survey was developed to learn about the PPC experience during COVID-19 in the United States. The survey was posted with permission on seven nationally focused Listservs.
A total of 207 PPC team members from 80 cities within 39 states and the District of Columbia participated. In the majority of hospitals, admitted pediatric patients were only allowed one parent as a visitor with the exception of both parents or nuclear family at end of life. Creative alternatives to grief support and traditional funeral services were described. The high incidence of respondents' depicted moral distress was often focused on an inability to provide a desired level of care due to existing rules and policies and bearing witness to patient and family suffering enhanced by the pandemic.
The COVID-19 pandemic has had a profound impact on the provision of end-of-life care and bereavement for children, family caregivers, and PPC providers. Our results identify tangible limitations of restricted personal contact and the pain of watching families stumble through a stunted grieving process. It is imperative that we find solutions for future global challenges and to foster solidarity in PPC.
重病患儿的父母担心他们脆弱的孩子感染 COVID-19，担心他们孩子的姑息治疗提供者是否能够继续为孩子提供同样质量的护理，以及谁能陪伴孩子提供安慰。对于提供者来说，医疗服务提供、沟通方式和为在大流行期间面临困境或丧亲之痛的家庭提供支持的转变可能会加剧提供者的道德困境。本研究旨在定义 COVID-19 大流行如何影响儿科姑息治疗 (PPC) 的临终关怀和丧亲关怀方法。
为了了解美国 COVID-19 期间 PPC 的经验，开发了姑息治疗需求评估的发展和修改在冠状病毒时代 (PANDEMIC) 调查。该调查在获得许可后发布在七个全国性重点列表服务上。
共有来自美国 39 个州和哥伦比亚特区的 80 个城市的 207 名 PPC 团队成员参与。在大多数医院，除临终时允许父母双方或核心家庭外，仅允许一名患儿家长作为探视者。还描述了悲伤支持和传统葬礼服务的创造性替代方案。受访者所描述的道德困境发生率很高，通常集中在由于现有规则和政策无法提供所需的护理水平上，并且由于大流行，患者和家庭的痛苦加剧。
COVID-19 大流行对儿童、家庭照顾者和 PPC 提供者的临终关怀和丧亲产生了深远的影响。我们的研究结果确定了限制个人接触的切实限制以及眼睁睁地看着家庭在发育不良的悲伤过程中挣扎的痛苦。我们必须找到解决未来全球挑战的方法，并在 PPC 中培养团结。
