Objectives Family caregivers of children who depend on medical technology (CMT) provide highly skilled care up to 24 hours per day. Sleep disruption places family caregivers at risk for poor health and related outcomes that threaten their long-term caregiving capacity. Few studies exist that have measured sleep in family caregivers, and most have relied entirely on subjective measures.
Methods In a prospective cohort study, family caregivers of CMT (n=42) and caregivers of healthy children (n=43) were recruited. Actigraphy data and a concurrent sleep diary were collected for 6 days/7 nights. Measures of sleep quality, depression, sleepiness, fatigue and quality of life were also administered.
Results Family caregivers of CMT averaged fewer hours of sleep per night (mean (SD)) (6.56 ± 1.4 vs 7.21 ± 0.6, p=0.02) of poorer quality (7.75 ± 2.9 vs 5.45 ± 2.8, p<0.01) than the control group. Three times as many family caregivers of CMT scored in the range for significant depressive symptomatology (12(33%) vs 4(10%), p=0.01) and experienced excessive daytime sleepiness (16(38%) vs 5(12%), p<0.01). Fatigue was also more problematic among family caregivers of CMT (22.12 ± 9.1 vs 17.44 ± 9.0, p=0.02).
Conclusions Family caregivers of CMT are at risk of acute and chronic sleep deprivation, psychological distress and impaired daytime function that may threaten their capacity for sustained caregiving. Family caregivers of CMT may be important targets for screening for sleep disorders and the development of novel sleep-promoting interventions.
- children with medical complexity
- home care
- sleep deprivation
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Contributors KK conceptualised and designed the study, drafted the initial manuscript, reviewed and revised the manuscript and approved the final manuscript as submitted. EC and KS conceptualised and designed the study, reviewed and revised the manuscript and approved the final manuscript as submitted. RS conceptualised and designed the study, reviewed and revised the initial and subsequent drafts of manuscript and approved the final manuscript as submitted. EP advised on the study design and data analysis, reviewed and revised the manuscript and approved the final manuscript as submitted.
Funding Krista Keilty was supported by The Canadian Lung Association; The Ontario Lung Association; The Janis Rotman Fellowship for Innovation in Paediatric Homecare, SickKids Foundation; Canadian Institutes for Health Research- Team Grant: Better Nights and Better Days and -Team Grant: Sleep and Circadian Rhythms. Eyal Cohen was supported by grant funding from the Canadian Institutes for Health Research (FDN-143315). Robyn Stremler was supported by a Canadian Institutes of Health Research New Investigator Award and an Ontario Ministry of Research and Innovation Early Researcher Award.
Competing interests None declared.
Ethics approval Institutional Review Board.
Provenance and peer review Not commissioned; externally peer reviewed.
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