Perceptions and experiences of adults with neuromuscular disorders and their carers in relation to airway clearance and respiratory physiotherapy in the community

Background: care, including respiratory physiotherapy, is advocated for people with Neuromuscular disorders (NMD) to manage respiratory muscle weakness, maximise cough efficiency and support airway clearance. The experience and perceptions of adults with NMD regarding airway clearance and respiratory physiotherapy are not known. : with NMD and their carers participated in online semi-structured interviews. They were recruited via convenience sampling from a Neuromuscular Centre and the Motor Neurone Disease Association. Data was analysed using content analysis. : people with NMD and three carers were successfully interviewed. Results suggested barriers to specialised services for adults with NMD. People with NMD were either unclear about, or unable to identify what was meant by respiratory physiotherapy or airway clearance. They also reported having no access to a respiratory physiotherapist at clinics or charity settings. Conversely, all needed to clear their secretions daily and suggested that there was value in education and reassurance about their respiratory management. Fears over the potential lack of services, including physiotherapy, were expressed. : with NMD may have unmet needs in relation to airway clearance and respiratory physiotherapy in the community. Further research is needed to explore perceptions of the role of airway clearance, and respiratory physiotherapy among other clinicians, so that barriers to accessing respiratory physiotherapy services can be understood and addressed.