'This is your golden time. You enjoy it and you've plenty time for crying after': How dysphagia impacts family caregivers of people with amyotrophic lateral sclerosis - A qualitative study
'This is your golden time. You enjoy it and you've plenty time for crying after': How dysphagia impacts family caregivers of people with amyotrophic lateral sclerosis - A qualitative study
复制标题
DOI：
10.1177/0269216320932754
复制
发表时间：
2020-06-17
影响因子：
4.4
通讯作者：
Jackson, Jeanne
中科院分区：
文献类型：
--
作者：
Lisiecka, Dominika;Kelly, Helen;Jackson, Jeanne
背景：吞咽困难（吞咽障碍）是肌萎缩侧索硬化症的一种公认症状。照顾一个人与肌萎缩侧索硬化症已被认为是一个复杂而艰巨的任务。到目前为止，还没有研究调查吞咽困难对肌萎缩侧索硬化症患者照顾者生活的影响。目的：从肌萎缩侧索硬化症患者家庭照顾者的角度探讨吞咽困难的经历。设计：采用解释现象学分析。个别访谈（n = 15），并在可能的情况下（7或n）进行进餐时间准备的意见。环境/参与者：参与者包括生活在爱尔兰西南部的肌萎缩侧索硬化症和吞咽困难患者的家庭照顾者（n = 10）。研究结果：吞咽困难改变了照顾者的进餐经历，并改变了他们对食物的态度。与无法稳定肌萎缩侧索硬化症患者的体重有关的挫折感和对窒息的恐惧强烈出现。护理人员通过提供持续的监督，努力确保肌萎缩侧索硬化症患者在用餐期间的安全。尽管吞咽困难和肌萎缩侧索硬化症带来了挑战，但护理人员希望在他们认为可能的情况下保持正常状态。结论：这项研究提供了一个独特的贡献，在推进我们的理解吞咽困难的影响，对照顾者的肌萎缩侧索硬化症。专业人员必须探索和认识到照顾者的需求，并为他们提供适当的支持，特别是如何管理窒息。
Background: 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. Aim: To investigate the experiences of dysphagia from the perspective of family caregivers of people diagnosed with amyotrophic lateral sclerosis. Design: 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 (n = 10). Findings: 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. Conclusion: 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.