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

Abstract

Objectives: To explore the experiences of Australian and New Zealand clinicians with respect to care pathways, their awareness and use of non-invasive ventilation guidelines, and their perspectives on delivering quality non-invasive ventilation services to people with neuromuscular disorders.

Design, setting, participants: Qualitative study; semi-structured focus groups and individual interviews with Australian and New Zealand clinicians who provide non-invasive ventilation services to people with neuromuscular disorders, recruited from participants at a 2017 sleep medicine conference. Interviews were conducted during 1 October 2017 - 31 May 2018.

Main outcome measures: Major themes identified by an iterative, semantic, and inductive analysis.

Results: A total of 28 participants attended the four focus group sessions and five individual interviews; fourteen each from New Zealand and Australia, seventeen women and eleven men, eighteen physicians and ten other clinicians. Two major themes were identified: decision making for current practice, and resource constraints. Participants noted variable use of clinical guidelines and limited training to meet the needs of people with neuromuscular disorders who require non-invasive ventilation. They described a lack of dedicated funding, unstructured care pathways, equipment supply levels that do not meet need, low staff-to-patient ratios and staff shortages, and the inability to deliver quality multidisciplinary care. The need for clinical guidelines and service specifications was highlighted as requisite for reducing variation in clinical care.

Conclusions: Systemic factors influence the needs-based provision of non-invasive ventilation for people with neuromuscular disorders. Development of clinical guidelines for Australia and New Zealand, dedicated funding for respiratory services for people with neuromuscular disorders, and specialist clinician training are important for equitable and high quality non-invasive ventilation care.

Keywords: Health services research; Health systems; Neuromuscular diseases; Respiration disorders.