Sleep Disturbance in Family Caregivers of Children Who Depend on Medical Technology: The Care to Sleep Study

Background / Rationale: Society relies on family caregivers of children who depend on medical technology (e.g. home ventilation) to provide highly skilled and vigilant care 24-hours per day. Few studies exist that have measured sleep in family caregivers and those that do have relied entirely on subjective measures. These data suggest that sleep disruption places family caregivers at risk for poor health and related outcomes that may impair their daytime function and long-term capacity for caregiving.

Objectives / Research Questions: The primary aim of this study was to compare sleep and related outcomes in family caregivers of children who depend on medical technology to family caregivers of healthy children.

Methods: In a prospective cohort study (balanced per child’s age) 42 family caregivers of children who depend on medical technology were recruited from a tertiary-level paediatric hospital and 43 controls from community-based paediatric clinics. Actigraphy was used for 6 days/7 nights and the Pittsburgh Sleep Quality Index was applied to collect sleep data. At home-visits sleep diaries were collected and measures of depression (CES-D) sleepiness (ESS) fatigue (MAF) quality of life (SF-12©) sleep hygiene (SHI) and child’s sleep quality (CSHQ) were administered.

Results: Family caregivers of children who depend on medical technology achieved 40 minutes less sleep per night (393.58 mins ± 82.07 vs 433.08 mins ± 33.15, p= .007) had more nocturnal awakenings (p= 0.02) and had more sleep deprived (<6 hours) nights (x2= 7.44 df = 1, p = .006) than controls. Scores on sleep quality (PSQI) also differed (7.75 ±2.93 vs 5.45 ±2.77, p= .001). Other statistically significant differences were found in outcomes of depression, sleepiness, fatigue, and child’s sleep quality (p < .02).

Significance / Implications: This study confirms using objective measurement that family caregivers of children who depend on medical technology experience significant sleep deprivation and its negative consequences. Results of the study inform future sleep intervention studies with this vulnerable group.