Differentiating needs of informal caregivers of individuals with ALS across the caregiving course: a systematic review

Abstract

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.

Keywords:

• Informal caregivers
• needs
• disease course
• caregiving stages
• support

Acknowledgments

The authors thank Dr Miriam Galvin (University of Dublin) for her initial feedback on the review protocol and Dr Hannah Ewald (University Library Basel) for her consult on the search strategy. For her support of the research project, we thank Martine Verwey.

Preregistration

A protocol was preregistered on PROSPERO (CRD42018105311).

Declaration of interest

The authors declare that they have none.

Notes

1 Available from https://www.nhlbi.nih.gov/health-topics/study-quality-assessment-tools (10. August 2019).

Additional information

Funding

This review was part of a wider project on ALS informal caregivers’ needs funded by the Swiss Academy of Medical Sciences [SAMS PC 21/17].