Sleep patterns, sleep instability, and health related quality of life in parents of ventilator-assisted children

Parents of children with chronic illnesses have poorer health related quality of life (HRQoL), shorter sleep duration, and poorer sleep quality than parents of healthy children. However, night-to-night variability of sleep in parents has not previously been considered. This study compared the sleep patterns of parents of ventilator-assisted children (VENT) and healthy, typically developing children (HEALTHY), and examined the relationship between sleep variability and perceived HRQoL. Seventy-nine mothers and 33 fathers from 42 VENT families (n = 56) and 40 HEALTHY (n = 56) families completed the SF-36 and wore an actigraph for 2 weeks. Reported bedtime and wake time, along with actigraphic total sleep time (TST), wake after sleep onset (WASO), and sleep efficiency (SE) were examined using both average values and night-tonight instability (mean square successive differences). VENT parents showed significantly later bedtimes, shorter TST, longer WASO, and lower SE than HEALTHY parents. VENT parents also exhibited greater instability in their reported wake time, WASO, and SE. Adjusting for family type and gender, greater instability of wake times, WASO and SE were related to poorer SF-36 subscale scores, while averaged sleep values were not. Many parents of ventilator-assisted children experience deficient sleep and show significant instability in their sleep, which was related to HRQoL. Similar to shift workers, variable sleep schedules that may result from caregiving responsibilities or stress may impact parental caregivers' health and well-being. Additional studies are needed to determine how support and other interventions can reduce sleep disruptions in parental caregivers.