Experiences with using mechanical in–exsufflation in amyotrophic lateral sclerosis

Abstract

Objectives: To explore patients’, family carers’ and health professionals’ experiences with using mechanical insufflation– exsufflation (MI-E) in amyotrophic lateral sclerosis (ALS) in the home setting. Methods: Qualitative study using data from semi-structured interviews with five patients with ALS, three family carers and three health professionals. Results: Factors associated with successful implementation of the MI-E device were trust between patient and carer, confidence in using the device, and sufficient instructions and practical training. Introducing an MI-E device could change social relationships between patient and carers. One patient reported not using MI-E, others used the device on a regular basis, and some patients used it sporadically depending on symptoms or the presence of carers who were confident with the device. Among effects reported by patients were elimination of airway secretions, feeling of being able to breathe more deeply and security in knowing that they had a device that could relieve symptoms in case they needed it. Conclusions: Health professionals need to take into account individual and social aspects of implementing an MI-E device in patients’ home environment. Proper instruction and training is important for building competency in how to use the device, and trust and continuity among carers are important factors for successful implementation.

Key words::

• Carers
• cough
• home care services
• insufflation

Acknowledgements

We thank all our informants for their contribution.

Conflicts of interest: None to declare. This work was supported by a grant from The Norwegian Neuromuscular Disorders Foundation.