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家庭照护者对家庭机械通气的看法:“希望我能被认真对待,且我不必独自承担负担”

[Perspectives of family caregivers in home mechanical ventilation: „That I’ll be taken seriously and that I not only have to carry the burden“].

作者信息

Lademann Julia, Schaepe Christiane, Ewers Michael

机构信息

1 Fachbereich 4: Soziale Arbeit und Gesundheit, Frankfurt University of Applied Sciences.

2 Institut für Gesundheits- und Pflegewissenschaft, Charité - Universitätsmedizin Berlin.

出版信息

Pflege. 2017;30(2):77-83. doi: 10.1024/1012-5302/a000532. Epub 2017 Mar 1.

DOI:10.1024/1012-5302/a000532
PMID:28245673
Abstract

Background: In Germany, Home Mechanical Ventilation (HMV) becomes more important, but there is only little knowledge about the situation of family caregivers involved in this form of care. Aim: To gain insights into the situation of family caregivers involved in HMV and to understand and reflect upon their roles and functions. Method: As part of a multi-part qualitative study problem-centered interviews with family caregivers (N = 15) of patients in HMV have been conducted and analysed thematically following principles used in Grounded Theory. Results: Family caregivers provide a broad spectrum of health care services in HMV with varying width and demand (i. e. housekeeping, organisation, nursing and therapeutic tasks). The division of tasks and responsibilities between nurses and family caregivers seems to be unclear in many cases and their limits of expertise is not reflected carefully. Family caregivers wish to be supported by nurses in their competency development process, but offers (if there are some) are often not really helpful from their point of view. Conclusions: Family caregivers engaged in HMV should be valued as partners with special expertise and not as petitioner or just burdened people. A needs-based support of family caregivers should therefore focus on partnership and targeted promotion of their special expertise.

摘要

背景

在德国,家庭机械通气(HMV)变得愈发重要,但对于参与这种护理形式的家庭照顾者的情况了解甚少。目的:深入了解参与HMV的家庭照顾者的状况,并理解和思考他们的角色与功能。方法:作为一项多部分定性研究的一部分,对HMV患者的家庭照顾者(N = 15)进行了以问题为中心的访谈,并按照扎根理论中使用的原则进行了主题分析。结果:家庭照顾者在HMV中提供了广泛的医疗保健服务,其广度和需求各不相同(例如家务管理、组织安排、护理和治疗任务)。在许多情况下,护士与家庭照顾者之间的任务和责任划分似乎并不明确,而且他们专业知识的局限性也未得到充分体现。家庭照顾者希望在其能力发展过程中得到护士的支持,但从他们的角度来看,(如果有提供的话)这些支持往往并无实际帮助。结论:参与HMV的家庭照顾者应被视为具有特殊专业知识的合作伙伴,而不是请愿者或仅仅是负担沉重的人。因此,基于需求的家庭照顾者支持应侧重于建立伙伴关系并针对性地提升他们的特殊专业知识。

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[Perspectives of family caregivers in home mechanical ventilation: „That I’ll be taken seriously and that I not only have to carry the burden“].家庭照护者对家庭机械通气的看法:“希望我能被认真对待,且我不必独自承担负担”
Pflege. 2017;30(2):77-83. doi: 10.1024/1012-5302/a000532. Epub 2017 Mar 1.
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Eur Respir Rev. 2023 May 3;32(168). doi: 10.1183/16000617.0237-2022. Print 2023 Jun 30.
2
Hygiene management for long-term ventilated persons in the home health care setting: a scoping review.居家医疗保健环境中长期机械通气患者的卫生管理:范围综述。
BMC Health Serv Res. 2022 Feb 23;22(1):244. doi: 10.1186/s12913-022-07643-w.
3
[Quality of Care for People with Home Mechanical Ventilation in Germany: A Scoping Review].
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