DEFACTUM, Public Health and Health Services Research, Central Denmark Region, Aarhus, Denmark.
Respiratory Center South, University Hospital, Odense, Denmark.
Respir Care. 2019 Sep;64(9):1157-1168. doi: 10.4187/respcare.06855. Epub 2019 Jul 23.
Users of home mechanical ventilation encounter major psychological and physiologic challenges. To ensure well-functioning home mechanical ventilation, users' experiences of care and treatment are important knowledge to supplement clinical perspectives. This systematic review aimed to summarize current qualitative evidence regarding experiences of home mechanical ventilation users.
By following Preferred Reporting Items for Systematic Review and Meta-Analyses guidelines, 9 databases were systematically searched. Seven studies met the inclusion criteria after title and/or abstract screening and full-text assessment. These were appraised by using the Relevance, Appropriateness, Transparency, Soundness checklist. Thematic analysis guided data extraction and identification of the findings. The Confidence in the Evidence for Reviews of Qualitative Research tool was applied to assess the confidence of the findings.
The review showed high confidence in 4 findings: an increase in quality of life, feeling forced to accept home mechanical ventilation, collaboration between home-care assistants and users of home mechanical ventilation is challenging, and information about the technology from a user's perspective. The review showed moderate confidence in 2 findings: living at home is pivotal for a normalized everyday life, and home mechanical ventilation causes a life with continued worries and uncertainty.
According to the users, treatment by home mechanical ventilation resulted in increased well-being and facilitated a community- and home-based lifestyle compared with institutional-based treatment. However, the users also expressed difficulties in coming to terms with the necessary extensive surveillance, which gave rise to a sense of undermined autonomy and self-determinism as well as continued worries and uncertainty. The users called this situation dependent independency. As a result of the review we call for an increased focus on a patient-centered treatment and care.
家庭机械通气使用者面临重大的心理和生理挑战。为确保家庭机械通气的正常运行，使用者的护理和治疗体验是补充临床观点的重要知识。本系统评价旨在总结目前关于家庭机械通气使用者体验的定性证据。
遵循系统评价和荟萃分析的首选报告项目指南，对 9 个数据库进行了系统搜索。经过标题和/或摘要筛选以及全文评估，有 7 项研究符合纳入标准。使用相关性、适当性、透明度、稳健性清单对这些研究进行了评估。主题分析指导了数据提取和发现的识别。应用定性研究证据评价工具评估发现的置信度。
该综述对 4 项发现的置信度较高：生活质量提高、被迫接受家庭机械通气、家庭护理助理与家庭机械通气使用者之间的协作具有挑战性以及从用户角度了解技术信息。该综述对 2 项发现的置信度为中等：在家中生活对正常日常生活至关重要，家庭机械通气会导致持续的担忧和不确定性的生活。
根据使用者的说法，与机构治疗相比，家庭机械通气治疗可提高幸福感并促进社区和家庭为基础的生活方式。然而，使用者也表示难以接受必要的广泛监测，这导致了自主权和自决感受到破坏，以及持续的担忧和不确定性。使用者将这种情况称为依赖独立性。基于本次综述，我们呼吁更加关注以患者为中心的治疗和护理。
