Health System Factors Affecting the Experience of Non-Invasive Ventilation Provision of People with Neuromuscular Disorders in New Zealand

Non-invasive ventilation (NIV) is a critical therapy for many patients with neuromuscular disorders (NMD), supporting those with respiratory failure to achieve adequate respiration and improve their quality of life. The aim of this study was to explore the experiences of access to, consent, uptake, maintenance and safe use of non-invasive ventilation by people with NMD. Semi-structured individual interviews were conducted with 11 people with NMD, each using NIV for more than 12 months. A critical realism ontological paradigm with contextualism epistemology guided the Reflexive Thematic Analysis. An Equity of Health Care Framework underpinned the analysis. Three themes were interpreted: Uptake and informed consent for NIV therapy; Practicalities of NIV; and Patient-clinician relationships. We identified issues at the system, organization and health professional levels. Conclusions: We recommend the development of national service specifications with clear standards and dedicated funding for patients with NMD and call on the New Zealand Ministry of Health to proactively investigate and monitor the variations in service delivery identified. The specific areas of concern for patients with NMD suggest the need for NMD-related NIV research and service provision responsive to the distinct needs of this population.