看不见的,无情的和不确定的:儿童息护理的护理人员识别的目标
Amy S Porter1, Mikhaila Layshock2, Jori Bogetz3
1Division of Supportive and Palliative Care, Department of Pediatrics, Mass General for Children, Massachusetts General Hospital, Boston, MA; Department of Pediatrics, Harvard Medical School, Boston, MA.
Journal of pain and symptom management
|December 25, 2025
概括
儿科息治疗 (PPC) 可以解决医疗复杂性 (CMC) 儿童的父母所面临的关键挑战. 识别这些挑战,包括感觉不见,不的责任和不确定性,为有针对性的PPC干预提供了杆.
科学领域:
- 儿科缓和护理 儿科缓和护理
- 儿童医学复杂性 儿童医学复杂性
- 护理人员支持护理人员支持
背景情况:
- 医疗复杂性儿童 (CMC) 的家长护理人员提供广泛的长期护理.
- 越来越多的CMC人口占儿科息治疗 (PPC) 患者的很大一部分.
- PPC临床医生可以为这些父母提供独特的支持.
研究的目的:
- 识别CMC家长护理人员面临的挑战.
- 确定PPC专业知识最能解决哪些挑战,特别是在沟通方面.
- 为CMC家长护理人员提供PPC服务的发展提供信息.
主要方法:
- 与19名CMC家长护理人员进行的半结构面试的二次定性分析.
- 用专题分析来确定照顾者的挑战.
- 综合了主题,以告知PPC干预和概念框架.
主要成果:
- 挑战的三个主要主题出现了:被看不见,不的护理责任,和不确定性 (3U的").
- 这些挑战表现在个人,医疗保健系统和社区层面.
- 儿童经常有复杂的慢性疾病 (神经,胃肠道,呼吸系统),需要医疗技术,并依赖医疗补助.
结论:
- CMC的家长经历了与照顾的"3U"相关的重大痛苦.
- 这些主题为临床医生提供了关键领域,在支持家长护理人员时可以关注这些领域.
- 可以最佳地利用PPC特定的技能集来支持CMC的家长护理人员.
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