Comparing contributors of parental sleep health in families with and without a child with Duchenne muscular dystrophy.

Background: The sleep health of caregivers of children with Duchenne muscular dystrophy (DMD) is often overlooked in clinical practice and research. This study characterizes the sleep health of caregivers of children with DMD (4-17 years) compared to parents of age-matched, unaffected children. We explore potential contributors to parental sleep efficiency and hypothesize that child awakenings will have a considerable influence on parental sleep efficiency.

Methods: In this observational study, parents and their children were asked to wear the ActiGraph GT9X Link at night for 1 month. From these data, actigraphy variables (eg, percent sleep efficiency, nocturnal awakenings) were calculated and averaged for parents and children. We also used the Pittsburgh Sleep Quality Index (PSQI) to measure subjective sleep quality.

Main Findings: Parents in the DMD group (n = 25, M = 84.5%) had significantly worse sleep efficiency compared to controls (n = 15, M = 87.8%, p = .048). This difference was sustained after controlling for parent age, child age, and average child awakenings (F(4, 23) = 2.68, p= .057, R = .32). Additionally, more parents in the DMD group scored as "poor sleepers" on the PSQI (above 5, 50%) compared to controls (23%), suggesting a strong, yet not statistically significant association between subjective poor sleep and group (χ(1) = 2.47, p = .116, OR = 3.33).

Conclusion: Parents of children with DMD exhibit both objective and subjective differences suggesting their sleep is impaired. Interestingly, these sleep concerns are not significantly explained by child awakenings as hypothesized. Future research is needed to fully understand the prevalence and cause of poor sleep in a larger group of DMD caregivers as well as direct care for caregivers of children with disabilities.