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

Abstract

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.

Non‐invasive ventilation for people with neuromuscular disorders in Australia and New Zealand: a qualitative study of clinician perspectives

“…People with neurological and complex health conditions are at greatest risk of poor transitions between health services 21 . Participants confirmed previous reports that differences in care were worse for people in rural areas, 10,15,22 but made no specific references to differences by ethnic background.…”

“…We found that clinicians are concerned about differences in the access to and quality of non‐invasive ventilation services. Our companion study of the experiences of people with neuromuscular disorders found that they reported similar health system, organisational, and health professional factors affecting non‐invasive ventilation services 15 …”

“…These factors were compounded by low staff‐to‐patient ratios and staff shortages. People with neuromuscular disorders have reported similar organisational problems 15 . Participants recognised the value of multidisciplinary teams for enhancing access to allied health and quality of care.…”

“…Positive patient–clinician relationships can mitigate these constraints; for example, some participants went beyond their core role to actively assist with access to resources. Conversely, poor patient‐clinician relationships can intensify the distress of people with neuromuscular disorders 11,15 …”

“…Domestic and overseas non‐invasive ventilation guidelines are used inconsistently across Australia and New Zealand, especially for people with neuromuscular disorders 8,9 . Some clinicians use the New South Wales guidelines 13 (the only published Australian guideline) while others have reported using a range of overseas guidelines, with different outcomes 14,15 …”