BACKGROUND: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: 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.