Abstract

Society relies on family caregivers of children who depend on medical technology (e.g. mechanical ventilation), to provide highly skilled and vigilant care in their homes 24 hours per day. Sleep disturbance is among the most common complaints of these caregivers. The purpose of this review is to systematically examine studies reporting on sleep outcomes in family caregivers of technology dependent children. All relevant databases were systematically searched: MEDLINE, EMBASE, PsycINFO and CINAHL. Given the heterogeneity of the studies, a qualitative analysis was completed and thus results of this review are presented as a narrative. Thirteen studies were retrieved that met eligibility criteria for inclusion. All of the studies reported on family caregivers of children with medical complexity living at home. Moreover, all of the studies relied entirely on self-report, not objective sleep measures. No intervention studies were found. Sleep disturbance was found to be common (51-100%) along with caregiver reports of poor sleep quality. Sleep quantity was seldom measured, but was found in the few studies that did, to be approximately 6 hours, or less than recommendations for optimal health and daytime function. Multiple caregiver, child and environmental factors were also identified that may negatively influence caregiver sleep, health and daytime function. Findings of this review suggest that family caregivers of children with medical complexity who depend on medical technology achieve poor sleep quality and quantity that may place them at risk of the negative consequences of sleep deprivation. Recommendations for practice include that health care providers routinely assess for sleep disturbance in this vulnerable population. The review also suggests that studies using objective sleep measurement are needed to more fully characterize sleep and inform the development of targeted interventions to promote sleep in family caregivers of technology dependent children.

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