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. 2023 Mar 8;20(6):4758.
doi: 10.3390/ijerph20064758.

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

Meredith A Perry  1 , Bernadette Jones  2   3 , Matthew Jenkins  1 , Hemakumar Devan  1 , Alister Neill  2   4 , Tristram Ingham  2   3
Affiliations

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

Meredith A Perry et al. Int J Environ Res Public Health. .

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.

Keywords: equity; health systems; healthcare quality variation; neuromuscular disorders; non-invasive ventilation; qualitative.

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Conflict of interest statement

The authors have no conflict of interest to declare. The principal investigator, co-investigators and direct members of their families have no commercial interests in the interventions being studied, nor did they have any financial relationship to the funder that may inappropriately influence his or her conduct in the study. The principal investigator and co-investigators will, in no way, be remunerated for their involvement in a way that may inappropriately influence his or her conduct in the study. The funder had no role in the design of the study; in the collection, analyses, or interpretation of data, in the writing of the manuscript or in the decision to publish the results.

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