Lay summary
Neuromuscular disorders (NMD) affect peripheral nerves and muscles, and can cause respiratory muscle weakness, resulting in reduced cough strength, chronic respiratory failure and increased frequency and severity of acute respiratory infections with protracted hospital admissions. The respiratory supports of non-invasive ventilation and mechanical insufflation-exsufflation, alongside health professional services, are the recommended standard of care in the community management of progressive respiratory dysfunction for many people with NMD. Currently, multi-level (system-macro, organisational-meso, and health professional-micro) constraints affect equitable access, consistency, and continuity of care of these respiratory services for people with NMD in NZ. This Research Activation will determine, in collaboration with Muscular Dystrophy Association New Zealand, Motor Neurone Disease New Zealand and health professionals, community driven priorities and solutions for improving respiratory health services delivery for people with NMD. Relationship building and research capacity enhancement activities will empower the development of co-led and designed, community health delivery project applications.