Lisiecka Dominika, Kelly Helen, Jackson Jeanne
Department of Nursing and Healthcare Sciences, School of Health and Social Sciences, Institute of Technology Tralee, Tralee, Ireland.
School of Clinical Therapies, University College Cork, Cork, Ireland.
Palliat Med. 2020 Sep;34(8):1097-1107. doi: 10.1177/0269216320932754. Epub 2020 Jun 17.
Dysphagia (swallowing impairments) is a well-recognised symptom of amyotrophic lateral sclerosis. Caring for a person with amyotrophic lateral sclerosis has been recognised as a complex and demanding task. No study to date investigated the impact of dysphagia on the lives of caregivers of people with amyotrophic lateral sclerosis.
To investigate the experiences of dysphagia from the perspective of family caregivers of people diagnosed with amyotrophic lateral sclerosis.
Interpretative phenomenological analysis was employed. Individual interviews (n = 15) plus observations of mealtime preparation were conducted, where possible (seven or n).
SETTING/PARTICIPANTS: Participants comprised family caregivers of people with amyotrophic lateral sclerosis and dysphagia living in the South West of Ireland ( = 10).
Dysphagia transformed the mealtime experiences of the caregivers and changed their approaches to food. Frustration related to the inability to stabilise the weight of the person with amyotrophic lateral sclerosis and the fear of choking emerged strongly. The caregivers strived to ensure the safety of people with amyotrophic lateral sclerosis during meals by providing constant supervision. Despite the challenges precipitated by dysphagia and amyotrophic lateral sclerosis, the caregivers wished to maintain normality for as long as they perceived it to be possible.
This study provides a unique contribution in advancing our understanding of the impact of dysphagia on the caregivers of people with amyotrophic lateral sclerosis. Professionals must explore and recognise the needs of the caregivers and provide them with appropriate support, especially how to manage choking.
吞咽困难（吞咽障碍）是肌萎缩侧索硬化症公认的症状。照顾肌萎缩侧索硬化症患者被认为是一项复杂且艰巨的任务。迄今为止，尚无研究调查吞咽困难对肌萎缩侧索硬化症患者照料者生活的影响。
从被诊断为肌萎缩侧索硬化症患者的家庭照料者角度调查吞咽困难的经历。
采用解释现象学分析方法。尽可能进行了个人访谈（n = 15）以及进餐准备观察（七次或n次）。
背景/参与者：参与者包括居住在爱尔兰西南部的肌萎缩侧索硬化症合并吞咽困难患者的家庭照料者（n = 10）。
吞咽困难改变了照料者的进餐体验，并改变了他们对待食物的方式。因无法稳定肌萎缩侧索硬化症患者体重而产生的挫败感以及对窒息的恐惧强烈显现。照料者在进餐期间通过持续监督努力确保肌萎缩侧索硬化症患者的安全。尽管吞咽困难和肌萎缩侧索硬化症带来了诸多挑战，但只要认为有可能，照料者都希望维持正常状态。
本研究为增进我们对吞咽困难对肌萎缩侧索硬化症患者照料者影响的理解做出了独特贡献。专业人员必须探索并认识到照料者的需求，并为他们提供适当支持，尤其是如何应对窒息情况。
