Packer Rebecca, Rumbach Anna, Farrell Anna, Hutchinson Nicole, Verner-Wren Stacey, Henderson Robert, McCombe Pamela
School of Health and Rehabilitation Sciences, The University of Queensland, St Lucia 4072, Australia.
Centre for Motor Neuron Disease Research, The University of Queensland, St Lucia 4072, Australia.
Healthcare (Basel). 2025 Sep 15;13(18):2306. doi: 10.3390/healthcare13182306.
: 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. : A qualitative descriptive study influenced by phenomenological principles was utilized in interviews with six pwMND and six caregivers. : 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. : 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.
吞咽困难和构音障碍是运动神经元病（MND）进展过程中常见且令人痛苦的症状。吞咽困难的医学并发症以及构音障碍对沟通有效性的影响已有文献记载。本研究的目的是从运动神经元病患者（pwMND）及其护理人员的角度描述吞咽困难和构音障碍的生活体验。：采用受现象学原理影响的定性描述性研究方法，对6名运动神经元病患者和6名护理人员进行访谈。：形成了三个主题，涵盖了参与者吞咽困难和构音障碍的经历：（1）“事情就是这样”；（2）你的整个生活都变了，但有些事情保持不变；（3）与信息和支持并存。：这些发现增进了我们对运动神经元病患者吞咽困难和构音障碍生活体验的理解。医疗专业人员在提供医疗信息时，需要考虑在进餐时间和交流互动中进行更广泛的评估实践，以及每个个体独特的信息和支持需求。
