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

Author

Listed:
  • Meredith A. Perry

    (Centre for Health, Activity and Rehabilitation Research (CHARR), School of Physiotherapy, Dunedin 9016, New Zealand)

  • Bernadette Jones

    (Department of Medicine, University of Otago—Wellington, Wellington 6242, New Zealand
    Foundation for Equity & Research New Zealand, Wellington 6147, New Zealand)

  • Matthew Jenkins

    (Centre for Health, Activity and Rehabilitation Research (CHARR), School of Physiotherapy, Dunedin 9016, New Zealand)

  • Hemakumar Devan

    (Centre for Health, Activity and Rehabilitation Research (CHARR), School of Physiotherapy, Dunedin 9016, New Zealand)

  • Alister Neill

    (Department of Medicine, University of Otago—Wellington, Wellington 6242, New Zealand
    Department of Respiratory Medicine, Te Whatu Ora Capital, Coast and Hutt Valley, Wellington 6140, New Zealand)

  • Tristram Ingham

    (Department of Medicine, University of Otago—Wellington, Wellington 6242, New Zealand
    Foundation for Equity & Research New Zealand, Wellington 6147, 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.

Suggested Citation

  • Meredith A. Perry & Bernadette Jones & Matthew Jenkins & Hemakumar Devan & Alister Neill & Tristram Ingham, 2023. "Health System Factors Affecting the Experience of Non-Invasive Ventilation Provision of People with Neuromuscular Disorders in New Zealand," IJERPH, MDPI, vol. 20(6), pages 1-19, March.
    • Handle: RePEc:gam:jijerp:v:20:y:2023:i:6:p:4758-:d:1090883
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    References listed on IDEAS

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    1. John M Kelley & Gordon Kraft-Todd & Lidia Schapira & Joe Kossowsky & Helen Riess, 2014. "The Influence of the Patient-Clinician Relationship on Healthcare Outcomes: A Systematic Review and Meta-Analysis of Randomized Controlled Trials," PLOS ONE, Public Library of Science, vol. 9(4), pages 1-7, April.
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