Living with Dysphagia and Dysarthria: A Qualitative Exploration of the Perspectives of People with Motor Neuron Disease and Their Caregivers.

Abstract

Background/Objectives: Dysphagia and dysarthria are common and distressing symptoms of motor neuron disease (MND) progression. The medical complications of dysphagia and the influence of dysarthria on communication effectiveness have been documented. The aim of the current study was to describe the lived experience of dysphagia and dysarthria from the perspectives of both people with motor neuron disease (pwMND) and their caregivers. Methods: A qualitative descriptive study influenced by phenomenological principles was utilized in interviews with six pwMND and six caregivers. Results: Three themes were developed that captured participants' experiences of dysphagia and dysarthria: (1) "This is the way things are"; (2) Your whole life changes, but some things stay the same; (3) Juxtaposition to information and support. Conclusions: The findings advance our understanding of the lived experience of dysphagia and dysarthria in MND. Health professionals need to consider broader assessment practices across both mealtimes and communicative interactions and each individual's unique information and support needs when providing healthcare information.