Background

Informal caregivers of people with amyotrophic lateral sclerosis (ALS) experience a range of needs across the course of the disease. For the provision of adequate support, an examination of the empirical evidence is necessary.

Aim

The purpose of the systematic review was to synthesize evidence of needs of informal caregivers of people with ALS at different stages of caregiving.

Method

Systematic review of empirical research on needs of ALS informal caregivers in both English and German, from January 2000 to August 2018. We searched the databases EMBASE, MEDLINE (PubMed), PsycINFO, and CINAHL. Study selection, quality assessment, and data extraction was performed independently. Both quantitative and qualitative studies were included. Of the included studies, we additionally screened citing literature in Google Scholar (citation tracking). We linked the narrative synthesis to four stages of caregiving described by Williams and colleagues and used descriptive inductive thematic analysis to structure data within the stages.

Results

From 3275 abstracts screened, 48 manuscripts met our inclusion criteria. Our data analysis shows that needs differ across the four caregiving stages. While the stage of bereavement (stage 4) includes too little data for separate themes, themes for needs after diagnosis (stage 1), and terminal stage (stage 3) could be specified. As the maintenance (stage 2) stage comprised of themes relevant across the caregiving course, it became an overall stage.

Discussion

Healthcare professionals need to pay attention to current caregiving stages to provide support for informal caregivers. Further research is needed to tease out support needs for the bereavement phase.

中文翻译：

---

在整个护理过程中区分 ALS 患者非正式护理人员的需求：系统评价。

背景

肌萎缩侧索硬化 (ALS) 患者的非正式护理人员在整个疾病过程中都会遇到一系列需求。为了提供足够的支持，需要对经验证据进行审查。

目的

系统评价的目的是综合 ALS 患者在不同护理阶段的非正式护理人员需求的证据。

方法

2000 年 1 月至 2018 年 8 月对英语和德语 ALS 非正式护理人员需求的实证研究进行系统回顾。我们检索了数据库 EMBASE、MEDLINE（PubMed）、PsycINFO 和 CINAHL。研究选择、质量评估和数据提取是独立进行的。包括定量和定性研究。在纳入的研究中，我们还筛选了 Google Scholar 中的引文文献（引文跟踪）。我们将叙事综合与威廉姆斯及其同事描述的四个护理阶段联系起来，并使用描述性归纳主题分析来构建各个阶段的数据。

结果

从筛选的 3275 份摘要中，48 份手稿符合我们的纳入标准。我们的数据分析表明，四个护理阶段的需求各不相同。虽然丧亲阶段（第 4 阶段）包含的单独主题的数据太少，但可以指定诊断后（第 1 阶段）和终末阶段（第 3 阶段）的需求主题。由于维护（第 2 阶段）阶段由整个护理课程相关的主题组成，因此它成为一个整体阶段。

讨论

医疗保健专业人员需要关注当前的护理阶段，为非正式护理人员提供支持。需要进一步研究来梳理丧亲阶段的支持需求。