It affects everything about me: Sleep problems among children with cerebral palsy and their caregivers in Ile-Ife-a mixed-methods study

Abstract

Background Sleep problems are common in children with cerebral palsy (CWCP). However, the effect of sleep problems in CWCP on caregivers has not been well studied. We aimed to describe the sleep problems in CWCP and their caregivers, and explore the effect of the children's sleep on the caregivers' sleep. Methods This cross-sectional, mixed-methods research was conducted at a pediatric neurology clinic in Ile-Ife, Nigeria. The Sleep Disturbance Scale for Children (SDSC) and Pittsburgh Sleep Quality Index (PSQI) were used for assessing sleep problems of the children and their caregivers, respectively. We held three focused group discussions (FGDs) involving 18 caregivers using a pretested FGD guide. We analyzed the quantitative data using Stata-15 software, while qualitative data were transcribed and managed using ATLAS.ti Software. Results We studied 71 CWCP–caregiver dyads and 69 age- and sex-matched controls. There was a male preponderance for CWCP (M:F = 1.09:1) and female preponderance for caregivers (89.5%). Sleep disturbances (SDSC > 40) occurred in 34% of CP children and poor sleep quality was seen in 39% of caregivers. When compared with age- and sex-matched typically developing peers, there was a statistically significant higher sleep disturbance in CWCP (p = 0.009). Sleep difficulties in the CWCP comprise sleep–wake transition disorders (45.0%), difficulty initiating sleep (43.3%), and sleep breathing disorders (37.5%). Caregivers experienced short sleep duration. One mother said: “It affects my sleep, health, and work. It affects everything about me.” Conclusion Sleep problems in CWCP affect the well-being of their caregivers. Interventions targeted at both the children and their caregivers are needed.