Sleep in caregivers of people with multiple sclerosis: A scoping review

Informal caregivers of people with multiple sclerosis (MS) frequently provide long-term support, which can adversely affect their sleep. The extent, characteristics, and determinants of sleep problems in caregivers of people with MS remain poorly characterized.

The objective of this scoping review was to map the existing literature examining sleep issues among caregivers of people with MS.

A systematic search was conducted on PubMed, Cochrane, Embase/Ovid, PsycINFO, CINHAL, and Web of Science to find relevant studies.

Of the 5036 studies screened, eight met inclusion criteria. Most caregivers were spouses or partners, representing 52.9-100% of caregiver samples across studies. The prevalence of self-reported poor sleep among MS caregivers ranged from 38.6% to 72.1%. In four studies that included a comparison to a non-caregiver control group, MS caregivers reported significantly more sleep difficulties. Poor sleep quality was related to increased levels of anxiety and depression. Sleep was examined as a primary outcome in one study; five studies reported results of a single sleep item embedded within broader instruments. All studies assessed caregiver sleep using subjective measures; no studies used objective sleep measures. Sleep assessment methods varied across studies, limiting direct comparison and interpretation of findings.

In conclusion, existing evidence suggests that sleep disturbance is common among caregivers of people with MS, yet sleep was rarely examined as a primary outcome and was assessed almost exclusively using brief subjective measures. Future empirical research is needed to comprehensively assess and characterize sleep in caregivers of people with MS.