title: Sleep deprivation in parents caring for children with complex needs at home: a mixed methods systematic review.
abstract: A significant number of children with a range of complex conditions and health care needs are being cared for by parents in the home environment. This mixed methods systematic review aimed to determine the amount of sleep obtained by these parents and the extent to which the child-related overnight health or care needs affected parental sleep experience and daily functioning. Summary statistics were not able to be determined due to the heterogeneity of included studies, but the common themes that emerged are that parents of children with complex needs experience sleep deprivation that can be both relentless and draining and affects the parents themselves and their relationships. The degree of sleep deprivation varies by diagnosis, but a key contributing factor is the need for parents to be vigilant at night. Of particular importance to health care professionals is the inadequate overnight support provided to parents of children with complex needs, potentially placing these parents at risk of poorer health outcomes associated with sleep deprivation and disturbance. This needs to be addressed to enable parents to remain well and continue to provide the care that their child and family require.
authors.affiliation: University of Tasmania, Launceston, Australia Damhnat.McCann@utas.edu.au.
authors.forename: Damhnat
authors.initials: D
authors.lastname: McCann
authors.affiliation: University of Tasmania, Launceston, Australia.
authors.forename: Rosalind
authors.initials: R
authors.lastname: Bull
authors.affiliation: University of Tasmania, Hobart, Australia.
authors.forename: Tania
authors.initials: T
authors.lastname: Winzenberg
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D002648:Child; D019988:Children with Disabilities / Q000706:statistics & numerical data; D022143:Family Nursing; D005260:Female; D006801:Humans; D008297:Male; D010290:Parents; D012892:Sleep Deprivation / Q000453:epidemiology*; D012893:Sleep Wake Disorders / Q000453:epidemiology
keywords: children with special care needs; disabled; parents; sleep deprivation; systematic review