Community-Based Provider Concerns About Pediatric Hospice and Palliative Care.

IF 3.5 2区医学 Q2 CLINICAL NEUROLOGY

Journal of pain and symptom management Pub Date : 2025-09-15 DOI:10.1016/j.jpainsymman.2025.09.008

Meaghann S Weaver, Tej Chana, Deborah Fisher, Betsy Hawley, Lisa C Lindley, Steven M Smith, Alix Ware, Christy Torkildson

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引用次数: 0

Abstract

Context: Children and families often rely on community-based hospice and palliative care organizations for care services.

Objectives: The purpose of this study was to explore pediatric-specific concerns of field-based hospice and palliative care clinicians in the United States.

Methods: The study analyzed responses from a free-text question distributed within an electronic organizational membership survey sent to National Alliance for Care at Home (the Alliance) members. Semantic content analysis was applied.

Results: Out of 295 survey respondents, 92 (31%) answered the optional free-text final question: "What keeps you up at night regarding pediatric palliative and hospice care?". Over half of responders (53%; n=49) worry most about "unmet needs". Additional practical concerns included: resources; staff shortages and lack of succession plans; training and education gaps; emotional toll; policy confusion; regulatory fears including concerns about the future of concurrent care; community awareness/stigma; referral patterns; lack of leadership support. Concerns were described as being in tension with the philosophy of hospice and palliative care. Responses depicted philosophical fears about the current or future risk of not upholding the field's core values such as equity, fairness, quality, sustainability, viability, non-abandonment due to pragmatic and practical realities.

Conclusion: Further coordinated research and engagement are warranted to prevent current evening concerns from devolving into daytime realities.

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以社区为基础的提供者对儿童临终关怀和姑息治疗的关注。

背景：儿童和家庭通常依赖社区临终关怀和姑息治疗组织的护理服务。目的：本研究的目的是探讨美国现场临终关怀和姑息治疗临床医生对儿科的具体关注。方法：研究分析了一份发给全国家庭护理联盟（联盟）成员的电子组织会员调查中的自由文本问题的回答。应用语义内容分析。结果：在295名受访者中，92人（31%）回答了可选的自由文本最后问题：“关于儿科姑息治疗和临终关怀，是什么让你夜不能寐？”超过一半的应答者（53%;n=49）最担心的是“未满足的需求”。其他实际问题包括：资源；人员短缺和缺乏继任计划；培训和教育差距；情感人数;政策混乱;监管方面的担忧包括对并行护理未来的担忧；社区意识/污名;转诊模式;缺乏领导的支持。担忧被描述为与临终关怀和姑息治疗的哲学相矛盾。回答描述了哲学上的担忧，即由于务实和现实的现实，如果不坚持该领域的核心价值观，如公平、公平、质量、可持续性、可行性、不放弃，当前或未来将面临风险。结论：有必要进一步协调研究和参与，以防止目前晚上的担忧变成白天的现实。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of pain and symptom management 医学-临床神经学

CiteScore

8.90

自引率

6.40%

发文量

821

审稿时长

26 days

期刊介绍： The Journal of Pain and Symptom Management is an internationally respected, peer-reviewed journal and serves an interdisciplinary audience of professionals by providing a forum for the publication of the latest clinical research and best practices related to the relief of illness burden among patients afflicted with serious or life-threatening illness.