Affiliations: [a] The Hospital for Sick Children, Toronto, ON, Canada | [b] University of Toronto, Toronto, ON, Canada | [c] Ryerson University, Toronto, ON, Canada
Correspondence:
[*]
Corresponding author: Krista Keilty, Centre for Innovation and Excellence, Child and Family-Centered Care, Hospital for Sick Children, 555 University Ave Toronto, ON, M6R 1P7, Canada. Tel.: +1 416 813 7654, Ext. 201697; E-mail:krista.keilty@utoronto.ca
Abstract:
PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.
Keywords: Children with medical complexity, family caregiver, sleep, technology dependent, systematic review, pediatrics
