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How to move forward in shared decision-making in pediatric palliative care 如何推进儿科姑息关怀的共同决策。
IF 1.6 4区 医学 Q1 Medicine Pub Date : 2024-01-01 DOI: 10.1016/j.cppeds.2024.101569
Chantal Y. Joren , Judith L. Aris-Meijer , A.A. Eduard Verhagen , John Lantos

Pediatric palliative care has grown immensely in recent years in the world. However, shared decision-making remains a complex process, especially in pediatric palliative care. In particular, a number of issues are priorities to improve the shared decision-making process and ensure high-quality pediatric palliative care for every child. Working on these priorities will improve shared decision-making and thereby enhance high-quality pediatric palliative care around the globe.

近年来,儿科姑息关怀在世界范围内得到了迅猛发展。然而,共同决策仍然是一个复杂的过程,尤其是在儿科姑息关怀中。要改善共同决策过程,确保为每一位患儿提供高质量的儿科姑息关怀,有一些问题尤其需要优先解决。就这些优先事项开展工作将改善共同决策,从而在全球范围内加强高质量的儿科姑息关怀。
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引用次数: 0
Seeking alignment of end-of-life goals within the Australian pediatric context 在澳大利亚儿科环境中寻求临终目标的一致性。
IF 1.6 4区 医学 Q1 Medicine Pub Date : 2024-01-01 DOI: 10.1016/j.cppeds.2023.101454
Sid Vemuri , Trisha M Prentice

In this article, we highlight the Australian pediatric palliative care context. We describe the way in which pediatricians may adopt ‘directive’ shared decision-making to align care plans with their perceptions of harm avoidance for the child. The degree to which ‘directive alignment’ is ethically appropriate or proportionate in the context of the clinical and social context of the child must be considered. Shared decision-making within palliative care continues to be a challenging dynamic to navigate for pediatricians.

在这篇文章中,我们强调澳大利亚儿科姑息治疗的背景。我们描述了儿科医生可能采用“指示”共同决策的方式,以使护理计划与他们对儿童避免伤害的看法保持一致。在儿童的临床和社会背景下,“指令一致性”在道德上是适当的或相称的程度必须考虑。姑息治疗中的共同决策对于儿科医生来说仍然是一个具有挑战性的动态导航。
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引用次数: 0
Shared decision-making in pediatric palliative care 儿科姑息关怀中的共同决策。
IF 1.6 4区 医学 Q1 Medicine Pub Date : 2024-01-01 DOI: 10.1016/j.cppeds.2023.101551
John T. Stroh MD , Brian S. Carter MD

Shared decision-making (SDM) with parents and adolescents is normative in pediatric practice in North America. In this article we discuss how it is applicable to the practice of pediatric palliative care (PPC). As PPC itself is exemplary of patient-and-family-centered care, it often uses a SDM approach in clarifying patient and family preferences, goals, and values. This often occurs in an iterative process and across care environments, wherein the patient and family narrative is elaborated. Decisions are then made incorporating both evidence-based medical practice and the unique attributes and considerations of the patient and family.

与父母和青少年共同决策(SDM)是北美儿科实践的规范。在本文中,我们将讨论它如何适用于儿科姑息关怀(PPC)实践。由于姑息治疗本身就是以患者和家庭为中心的护理典范,因此它经常使用 SDM 方法来明确患者和家庭的偏好、目标和价值观。这通常会在不同的护理环境中反复进行,在此过程中会详细阐述患者和家属的叙述。然后结合循证医学实践以及患者和家属的独特属性和考虑因素做出决定。
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引用次数: 0
Pediatric palliative care across continents: Communication and shared-decision-making 跨大洲的儿科姑息关怀:沟通与共同决策。
IF 1.6 4区 医学 Q1 Medicine Pub Date : 2024-01-01 DOI: 10.1016/j.cppeds.2023.101552
Chantal Y. Joren , Judith L. Aris-Meijer , A.A. Eduard Verhagen , John Lantos

Despite the significant growth and development of pediatric palliative care worldwide, significant challenges remain. One of those challenges is shared decision-making, by which parents, families and professionals all work together to develop a plan of care that reflects both the medical facts and the patient’s family’s values. Shared decision-making about palliative care and about death and dying may mean different things in different cultures and countries. It is therefore important to learn and compare practices around the world.

尽管儿科姑息关怀在全球范围内取得了长足的发展和进步,但仍然面临着巨大的挑战。其中一项挑战就是共同决策,即父母、家庭和专业人员共同制定一项既能反映医学事实又能反映病人家庭价值观的关怀计划。关于姑息关怀以及死亡和临终的共同决策,在不同的文化和国家可能有不同的含义。因此,学习和比较世界各地的做法非常重要。
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引用次数: 0
International perspectives on pediatric palliative care: Argentina 儿科姑息关怀的国际视角:阿根廷
IF 1.6 4区 医学 Q1 Medicine Pub Date : 2024-01-01 DOI: 10.1016/j.cppeds.2023.101488
Rut Kiman

Since the 1980s, there has been a growing recognition of the importance of palliative care for children with life-limiting and life-threatening conditions. Collaboration, regulatory frameworks, educational initiatives and a patient-centered approach have contributed to the advancement of PPC services for children with life-limiting conditions. In spite of this progress, pediatric palliative care in Argentina is not yet fully integrated into our health care system.

自 20 世纪 80 年代以来,人们越来越认识到姑息关怀对于患有局限生命和危及生命疾病的儿童的重要性。合作、监管框架、教育倡议和以患者为中心的方法,都促进了为患有生命极限性疾病的儿童提供姑息关怀服务的进步。尽管取得了这一进展,但阿根廷的儿科姑息治疗尚未完全纳入我们的医疗保健系统。
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引用次数: 0
Editorial Board Page 编辑委员会页面
IF 1.6 4区 医学 Q1 Medicine Pub Date : 2024-01-01 DOI: 10.1016/S1538-5442(24)00007-5
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引用次数: 0
The slow, necessary growth of pediatric palliative care 儿科姑息关怀缓慢而必要的发展。
IF 1.6 4区 医学 Q1 Medicine Pub Date : 2024-01-01 DOI: 10.1016/j.cppeds.2024.101570
John D. Lantos MD
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引用次数: 0
Silent suffering: Status of pediatric palliative care services in Pakistan 无声的痛苦:巴基斯坦儿童姑息治疗服务的现状。
IF 1.6 4区 医学 Q1 Medicine Pub Date : 2024-01-01 DOI: 10.1016/j.cppeds.2023.101456
Sarosh Saleem MBBS, MBeth

This article sheds light on Pakistan's challenging healthcare landscape, focusing on the underdeveloped state of pediatric palliative care (PPC). Despite being the fifth most populous country, Pakistan allocates minimal resources to its healthcare system, resulting in severe shortages of healthcare professionals. The scarcity of PPC services, exacerbated by cultural, social, and financial factors, poses substantial challenges to providing quality end-of-life care to children. However, the article also offers a glimpse of hope, highlighting the growing awareness among healthcare providers and ongoing efforts to bridge the gaps in PPC services, ultimately aiming to improve the quality of life for those in need.

本文揭示了巴基斯坦具有挑战性的医疗保健前景,重点关注儿科姑息治疗(PPC)的不发达状态。尽管是世界上人口第五多的国家,巴基斯坦分配给医疗保健系统的资源很少,导致医疗保健专业人员严重短缺。PPC服务的稀缺性,加上文化、社会和经济因素的影响,给为儿童提供高质量的临终关怀带来了巨大挑战。然而,这篇文章也提供了一丝希望,强调了医疗保健提供者日益提高的意识,以及弥合PPC服务差距的持续努力,最终目标是改善那些有需要的人的生活质量。
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引用次数: 0
International perspectives on pediatric palliative care: Mexico 儿科姑息关怀的国际视角:墨西哥
IF 1.6 4区 医学 Q1 Medicine Pub Date : 2024-01-01 DOI: 10.1016/j.cppeds.2023.101550
Yuriko Nakashima-Paniagua MD

The safe keeping of children and families that require Pediatric Palliative Care (PPC), presents a challenge to the healthcare professionals and systems, particularly in countries like Mexico. This is due to social inequities, the cultural diversity, the geo-regional position that determine specific social dynamics and nowadays the huge immigration issues that we are facing.

The combination of all these factors, requires a vast knowledge from PPC providers about the necessary tools to properly provide the support needed in the most effective and efficient way, based on compassion. Knowing how to accurately understand the needs of children and their families requiring PPC and how to best assist them during the decision-making process is extremely important.

At the same time, all PPC team members require expertise in addressing pediatric pathophysiology and bioethical issues that apply to diverse and heterogeneous age groups.

需要儿科姑息关怀(PPC)的儿童和家庭的安全保护对医疗保健专业人员和系统提出了挑战,尤其是在墨西哥这样的国家。这是因为社会不平等、文化多样性、地理位置决定了特定的社会动态,以及如今我们所面临的巨大移民问题。所有这些因素结合在一起,要求姑息关怀服务提供者掌握大量必要的知识,以便以最有效、最高效的方式,基于同情心,适当地提供所需的支持。同时,所有儿科病理生理学团队成员都需要具备处理儿科病理生理学和生物伦理问题的专业知识,这些问题适用于不同的异质年龄组。
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引用次数: 0
Service and emotional support animals in pediatrics 小儿科的服务和情感支持动物。
IF 1.6 4区 医学 Q1 Medicine Pub Date : 2023-12-01 DOI: 10.1016/j.cppeds.2023.101503
Anita Narayanan MD , Linda Solamen MD , Chioma Torres MD

There is a growing body of evidence of the positive psychological and social impacts animals can have on individuals with chronic conditions and disabilities. Service animals have been used primarily in the adult population. Recently they have become more prevalent in pediatric care to improve the quality of life and emotional well-being of children with physical and mental health challenges. Studies have shown that both service animals and emotional support animals (ESAs) improve physical, psychological, and social health of children with chronic medical conditions and neurodevelopmental disabilities. Due to the increasing use of service animals and ESAs in pediatrics, providers need to be aware of which children may benefit from having a service animal or ESA, the process to obtain them and recognize the practical, financial, and ethical considerations or challenges children and their families may encounter. This article aims to provide guidance on the differences between service and emotional support animals and considerations for their use in pediatric care.

越来越多的证据表明,动物对患有慢性疾病和残疾的人有积极的心理和社会影响。服务性动物主要用于成年人群。最近,它们在儿科护理中变得越来越普遍,以改善有身体和心理健康挑战的儿童的生活质量和情感健康。研究表明,服务性动物和情感支持动物(esa)都能改善患有慢性疾病和神经发育障碍的儿童的身体、心理和社会健康。由于服务性动物和ESA在儿科的使用越来越多,提供者需要了解哪些儿童可能从服务性动物或ESA中受益,获得它们的过程,并认识到儿童及其家庭可能遇到的实际、经济和道德考虑或挑战。本文旨在就服务性动物和情感支持动物之间的差异以及在儿科护理中使用它们的考虑提供指导。
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引用次数: 2
期刊
Current Problems in Pediatric and Adolescent Health Care
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