Covenant Health, Misericordia Community Hospital Intensive Care Unit, Edmonton, Alberta, Canada.
School of Public Health, University of Alberta, Edmonton, Alberta, Canada.
Can J Neurol Sci. 2021 Jul;48(4):496-503. doi: 10.1017/cjn.2020.240. Epub 2020 Oct 26.
Amyotrophic lateral sclerosis (ALS) presents many transitions for persons/people with ALS (PwALS) and their caregivers. Transitions are passages from one life phase, condition, or status to another. We used qualitative methods to understand how PwALS and caregivers experience transitions throughout their ALS journey.
PwALS and their caregivers were recruited from a multidisciplinary ALS clinic in Edmonton, Canada. We recruited patients at the stage of ALS that home mechanical ventilation, a feeding tube, and/or assistive communication technology had been offered. Semi-structured interviews were audio-recorded, transcribed, and analyzed using qualitative thematic analysis.
We interviewed 14 PwALS and 15 caregivers and identified 5 recurring themes. The importance of community was identified by many PwALS and caregivers who expressed feelings of loneliness and isolation. Most caregivers were spouses and couples navigated a change in their relationship roles as one spouse transitioned to becoming a caregiver while the other transitioned to dependency. The caregiver spouses reported a sense of "total responsibility" that encompassed continual vigilance for the PwALS's well-being, managing their household and finances. PwALS and caregivers reported transitioning to reliance on life-sustaining medical devices; early adoption and information on these devices increased their quality of life. Participants also wanted more and earlier information on advanced care planning. PwALS and caregivers identified adapting to new forms of communication as a necessity.
ALS presents many transitions for PwALS and caregivers. Understanding these transitions is important for ALS healthcare professionals who seek to implement best care practices.
肌萎缩侧索硬化症（ALS）给肌萎缩侧索硬化症患者（PwALS）及其护理人员带来了许多转变。转变是指从一个生命阶段、状况或状态过渡到另一个阶段、状况或状态。我们使用定性方法来了解 PwALS 和护理人员在 ALS 旅程中是如何经历这些转变的。
PwALS 和他们的护理人员是从加拿大埃德蒙顿的一家多学科 ALS 诊所招募的。我们招募了处于 ALS 阶段的患者，他们已经提供了家庭机械通气、喂养管和/或辅助沟通技术。使用定性主题分析对半结构化访谈进行了音频记录、转录和分析。
我们采访了 14 名 PwALS 和 15 名护理人员，确定了 5 个反复出现的主题。许多 PwALS 和护理人员都表示感受到了孤独和孤立，因此社区的重要性得到了体现。大多数护理人员是配偶，当一方过渡到照顾者角色，而另一方过渡到依赖者角色时，夫妻双方共同应对这种关系角色的变化。照顾者配偶报告了一种“完全责任”感，包括对 PwALS 福祉的持续关注，管理家庭和财务。PwALS 和护理人员报告说，他们过渡到依赖维持生命的医疗设备；早期采用和了解这些设备提高了他们的生活质量。参与者还希望获得更多和更早的关于高级护理计划的信息。PwALS 和护理人员确定适应新的沟通形式是必要的。
ALS 给 PwALS 和护理人员带来了许多转变。了解这些转变对于寻求实施最佳护理实践的 ALS 医疗保健专业人员很重要。
