Poppe Christopher, Schweikert Kathi, Krones Tanja, Wangmo Tenzin
Institute for Biomedical Ethics, University of Basel, Bernoullistr. 28, 4056 Basel, Switzerland.
REHAB Basel, Basel, Switzerland; University Hospital of Basel, Basel, Switzerland.
Palliat Care Soc Pract. 2022 Feb 28;16:26323524221077700. doi: 10.1177/26323524221077700. eCollection 2022.
This study explores the supportive needs of informal caregivers of people with amyotrophic lateral sclerosis (ALS) in Switzerland.
We conducted semi-structured interviews with nine informal caregivers currently providing care to a person with ALS, 14 bereaved informal caregivers, and 13 healthcare professionals. Interviews were recorded on digital audio and analysed using an inductive thematic analysis within a realist framework.
Informal caregivers discussed five themes of support needs relating to being overburdened by administrative demand, in contact with healthcare providers, home support, especially during the terminal phase, and having or lacking social support. Healthcare professionals discussed three themes of support needs of informal caregivers which related to the general institutional support for informal caregivers, their own work as caring for informal caregivers, and the challenges in healthcare for families with ALS they encountered.
Informal caregiving for people with ALS can be demanding. This study provides evidence for improvements in supporting informal caregivers. It shows administrative needs of informal caregivers, stresses their needs regarding advance care planning early in the context of ALS, and underlines the importance of social support, be it in peer-groups or community care.
本研究探讨瑞士肌萎缩侧索硬化症（ALS）患者非正式照护者的支持需求。
我们对9名目前正在为ALS患者提供照护的非正式照护者、14名失去亲人的非正式照护者以及13名医疗保健专业人员进行了半结构化访谈。访谈采用数字音频记录，并在现实主义框架内使用归纳主题分析法进行分析。
非正式照护者讨论了与行政需求负担过重、与医疗保健提供者接触、家庭支持（尤其是在终末期）以及有或缺乏社会支持相关的五个支持需求主题。医疗保健专业人员讨论了非正式照护者支持需求的三个主题，这些主题与对非正式照护者的一般机构支持、他们自己作为照顾非正式照护者的工作以及他们在为ALS患者家庭提供医疗保健时遇到的挑战有关。
对ALS患者的非正式照护可能要求很高。本研究为改善对非正式照护者的支持提供了证据。它显示了非正式照护者的行政需求，强调了他们在ALS早期阶段对预先护理计划的需求，并强调了社会支持的重要性，无论是在同龄人团体还是社区护理中。
