Experiences and support needs of patients receiving home mechanical ventilation and their caregivers: a qualitative...

Home mechanical ventilation (HMV) is an important form of support for the out-of-hospital management of patients with chronic respiratory failure and long-term ventilatory dependence. It plays an important role in prolonging life, relieving symptoms, and supporting home living. As the site of treatment extends from the hospital to the home, patients and caregivers must jointly face challenges related to treatment decision-making, technological adaptation, expansion of caregiving responsibilities, and insufficient support systems. Existing studies have often focused on a single disease, a single ventilation modality, or a single caregiving perspective, and a systematic synthesis of the experiences and support needs of patients receiving HMV and their caregivers remains lacking.

This study aimed to systematically synthesize the experiences and support needs of patients receiving HMV and their caregivers during home treatment through a qualitative systematic review and meta-synthesis. It also explored core issues across different disease types, ventilation modalities, levels of dependence, and caregiving contexts to provide evidence for developing stratified and continuous care support pathways for the family as a unit.

This study conducted a meta-synthesis using the Joanna Briggs Institute methodology for qualitative systematic reviews. PubMed, Web of Science, Embase, the Cochrane Library, and CINAHL were systematically searched from January 1, 2020, to April 30, 2026, and the reference lists of the included studies were manually searched. The methodological quality of the included studies was assessed using the JBI Critical Appraisal Checklist for Qualitative Research. Findings were categorized and synthesized using the JBI meta-aggregation approach, and confidence in the evidence for the synthesized themes was assessed using the ConQual framework.

Thirteen qualitative studies were included, involving 129 patients receiving HMV and 121 family-caregiving-related participants, including family caregivers, relatives, and bereaved family members. Five synthesized themes and 17 subthemes were generated: (1) passive entry, repeated weighing, and active participation in HMV decision-making; (2) adapting to the integration of ventilation technology into everyday family life; (3) ongoing tensions among life support, quality of life, and autonomy; (4) expansion of family caregiving responsibilities and reconstruction of the boundaries of professional care; and (5) gaps in support systems and the need for continuous support for the whole family. The ConQual assessment showed that the final level of confidence was moderate for all five synthesized themes.

HMV is not only a long-term respiratory support technology but also a continuous care process deeply embedded in disease progression, family life, and healthcare service systems. The experiences of patients and caregivers are jointly influenced by disease type, ventilation modality, level of ventilatory dependence, socioeconomic conditions, and healthcare system context. HMV nursing practice should shift from individual patient management and guidance on device use toward continuous support for the family as a unit. Particular attention should be given to strengthening shared decision-making, caregiver training, professional follow-up, remote monitoring and digital follow-up, psychosocial support, resource navigation, and integration of early palliative care to improve the sense of security, quality of life, and sustainability of care for both patients and caregivers.