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社区儿科姑息治疗。

Pediatric palliative care in the community.

机构信息

Dual Fellow in Pediatric Hematology/Oncology and Hospice and Palliative Medicine, Department of Oncology, Division of Quality of Life and Palliative Care, St. Jude Children's Research Hospital, Memphis, TN.

Fellow in Hospice and Palliative Medicine, Haslinger Division of Pediatric Palliative Care, Akron Children's Hospital, Akron, OH.

出版信息

CA Cancer J Clin. 2015 Jul-Aug;65(4):316-33. doi: 10.3322/caac.21280. Epub 2015 May 7.

Abstract

Early integration of pediatric palliative care (PPC) for children with life-threatening conditions and their families enhances the provision of holistic care, addressing psychological, social, spiritual, and physical concerns, without precluding treatment with the goal of cure. PPC involvement ideally extends throughout the illness trajectory to improve continuity of care for patients and families. Although current PPC models focus primarily on the hospital setting, community-based PPC (CBPPC) programs are increasingly integral to the coordination, continuity, and provision of quality care. In this review, the authors examine the purpose, design, and infrastructure of CBPPC in the United States, highlighting eligibility criteria, optimal referral models to enhance early involvement, and fundamental tenets of CBPPC. This article also appraises the role of CBPPC in promoting family-centered care. This model strives to enhance shared decision making, facilitate seamless handoffs of care, maintain desired locations of care, and ease the end of life for children who die at home. The effect of legislation on the advent and evolution of CBPPC also is discussed, as is an assessment of the current status of state-specific CBPPC programs and barriers to implementation of CBPPC. Finally, strategies and resources for designing, implementing, and maintaining quality standards in CBPPC programs are reviewed.

摘要

早期整合儿科姑息治疗(PPC),为患有危及生命疾病的儿童及其家庭提供全面关怀,解决心理、社会、精神和身体等方面的问题,同时不排除以治愈为目标的治疗。PPC 的介入理想情况下贯穿整个疾病过程,以改善患者和家庭的护理连续性。尽管目前的 PPC 模式主要集中在医院环境中,但基于社区的 PPC(CBPPC)计划对于协调、连续性和提供高质量的护理越来越重要。在这篇综述中,作者研究了美国 CBPPC 的目的、设计和基础设施,强调了资格标准、最佳转诊模式以促进早期介入以及 CBPPC 的基本原则。本文还评估了 CBPPC 在促进以家庭为中心的护理方面的作用。该模式旨在加强共同决策,促进护理无缝交接,维持所需的护理地点,并为在家中死亡的儿童提供舒适的临终关怀。本文还讨论了立法对 CBPPC 的出现和发展的影响,评估了各州 CBPPC 计划的现状以及实施 CBPPC 计划的障碍。最后,回顾了设计、实施和维持 CBPPC 计划质量标准的策略和资源。

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