Parents of children with Neurodevelopmental Disabilities (NDDs) are at risk of sleep loss. No comprehensive systematic reviews examining parental sleep outcomes in caregivers of children with NDDs exist. A systematic search was conducted between June and August 2016 examining sleep quantity, quality, sleepiness, and fatigue outcomes of caregivers of children with NDDs. Of 7,534 citations retrieved, 33 met eligibility criteria. Most studies (n = 27) were cross-sectional, included a range of NDDs and were of “poor” (n = 14) or “fair” (n = 17) quality. Few good quality studies compared objectively measured sleep in parents of children with NDDs with parents with typically developing children. Parents of children with NDDs consistently reported significantly poorer subjective sleep quality. There is a paucity of good quality comparative studies, using well-validated measures, examining parental sleep outcomes. Future research should aim to fill this gap, providing greater insight to parents’ experiences, and identifying targets for intervention design and evaluation.
*AdigaD.GuptaA.KhannaM.TalyA. B.ThennarasuK. (2014). Sleep disorders in children with cerebral palsy and its correlation with sleep disturbance in primary caregivers and other associated factors. Annals of Indian Academy of Neurology, 17, 473-476. doi:10.4103/0972-2327.144044
2.
AllikH.LarssonJ.SmedjeH. (2006). Health-related quality of life in parents of school-age children with Asperger syndrome or high-functioning autism. Health and Quality of Life Outcomes, 4, Article 1. doi:10.1186/1477-7525-4-1
3.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing.
4.
BalkinT. J. (2011). Performance deficits during sleep loss: Effects of time awake, time of day, and time on task. In KrygerM. H.RothT.DementW. C. (Eds.), Principles and practice of sleep medicine (5th ed., pp. 738-744). St. Louis, MO: Elsevier.
5.
BoergersJ.HartC.OwensJ. A.StreisandR.SpiritoA. (2007). Child sleep disorders: Associations with parental sleep duration and daytime sleepiness. Journal of Family Psychology, 21, 88-94. doi:10.1037/0893-3200.21.1.88
6.
BonnetM. H. (2011). Acute sleep deprivation. In KrygerM. H.RothT.DementW. C. (Eds.), Principles and practice of sleep medicine (5th ed., pp. 54-66). St. Louis, MO: Elsevier.
7.
Bourke-TaylorH.PallantJ. F.LawM.HowieL. (2013). Relationships between sleep disruptions, health and care responsibilities among mothers of school-aged children with disabilities. Journal of Pediatrics and Child Health, 49, 775-782. doi:10.1111/jpc.12254
8.
BoyleC.BouletS.SchieveL. A.CohenR. A.BlumbergS. J.Yeargin-AllsoppM.. . . KoganM. D. (2011). Trends in the prevalence of developmental disabilities in US children, 1997-2008. Pediatrics, 127, 1034-1042. doi:10.1542/peds.2010-2989
9.
BreslauN.RothT.RosenthalL.AndreskiP. (1997). Daytime sleepiness: An epidemiological study of young adults. American Journal of Public Health, 87, 1649-1653. doi:10.2105/AJPH.87.10.1649
10.
BuysseD. J.ReynoldsC. F.MonkT. H.BermanS. R.KupferD. J. (1989). The Pittsburgh Sleep Quality Index: A new instrument for psychiatric practice and research. Psychiatry Research, 28, 193-213. doi:10.1016/0165-1781(89)90047-4
11.
CarskadonM. A.DementW. C. (2011). Normal human sleep: An overview. In KrygerM. H.RothT.DementW. C. (Eds.), Principles and practice of sleep medicine (5th ed., pp. 16-26). St. Louis, MO: Elsevier.
12.
ChristensenD. L.BaioJ. Van Naarden BraunK.BilderD.CharlesJ.ConstantinoJ. N.. . . Yeargin-AllsoppM. (2016). Prevalence and characteristics of autism spectrum disorder among children aged 8 years—Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2012. MMWR Surveillance Summaries, 65, 1-23. doi:10.15585/mmwr.ss6503a1
13.
*ChuJ.RichdaleA. L. (2009). Sleep quality and psychological wellbeing in mothers of children with developmental disabilities. Research in Developmental Disabilities, 30, 1512-1522. doi:10.1016/j.ridd.2009.07.007
*CroweT. K.ClarkL.QuallsC. (1996). The impact of child characteristics on mothers’ sleep patterns. Occupational Therapy Journal of Research, 16, 3-22. doi:10.1177/153944929601600101
16.
*CroweT. K.FlorezS. I. (2006). Time use of mothers with school-age children: A continuing impact of a child’s disability. American Journal of Occupational Therapy, 60, 194-203. doi:10.5014/ajot.60.2.194
17.
CuomoB. L.VazS.LeeE. A.ThompsonC.RogersonJ. M.FalkmerT. (2017). Effectiveness of sleep-based interventions for children with autism spectrum disorder: A meta-synthesis. Pharmacotherapy, 37, 555-578. doi:10.1002/phar.1920
18.
DiddenR.SigafoosJ. (2001). A review of the nature and treatment of sleep disorders in individuals with developmental disabilities. Research in Developmental Disabilities, 22, 255-272. doi:10.1016/S0891-4222(01)00071-3
19.
DingesD. F.PackF.WilliamsK.GillenK. A.PowellJ. W.OttE. G.. . . PackA. I. (1997). Cumulative sleepiness, mood disturbance, and psychomotor vigilance performance decrements during a week of sleep restricted to 4-5 hours per night. Sleep, 20, 267-277. doi:10.1093/sleep/20.4.267
20.
*DykensE. M.FisherM. H.TaylorJ. L.LambertW.MiodragN. (2014). Reducing distress in mothers of children with autism and other disabilities: A randomized trial. Pediatrics, 134(2), e454-e463. doi:10.1542/peds.2013-3164
21.
EstesA.MunsonJ.DawsonG.KoehlerE.ZhouX.AbbottR. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, 13, 375-387. doi:10.1177/1362361309105658
22.
FarautB.AndrillonT.VecchieriniM.LegerD. (2017). Napping: A public health issue. From epidemiological to laboratory studies. Sleep Medicine Reviews, 35, 85-100. doi:10.1016/j.smrv.2016.09.002
23.
*FosterR. H.KozachekS.SternM.ElseaS. H. (2010). Caring for the caregivers: An investigation of factors related to well-being among parents caring for a child with Smith-Magenis syndrome. Journal of Genetic Counseling, 19, 187-198. doi:10.1007/s10897-009-9273-5
24.
*GallagherS.PhillipsA. C.CarrollD. (2010). Parental stress is associated with poor sleep quality in parents caring for children with developmental disabilities. Journal of Pediatric Psychology, 35, 728-737. doi:10.1093/jpepsy/jsp093
25.
*GallagherS.PhillipsA. C.OliverC.CarrollD. (2008). Predictors of psychological morbidity in parents of children with intellectual disabilities. Journal of Pediatric Psychology, 33, 1129-1136. doi:10.1093/jpepsy/jsn040
26.
*GevirD.GoldstandS.WeintraubN.ParushS. (2006). A comparison of time use between mothers of children with and without disabilities. Occupational Therapy Journal of Research, 26, 117-127. doi:10.1177/153944920602600305
27.
*GialloR.WoodC. E.JellettR.PorterR. (2013). Fatigue, wellbeing and parental self-efficacy in mothers of children with an autism spectrum disorder. Autism, 17, 465-480. doi:10.1177/1362361311416830
28.
*GoldmanS. E.BichellT. J.SurdykaK.MalowB. A. (2012). Sleep in children and adolescents with Angelman syndrome: Association with parent sleep and stress. Journal of Intellectual Disability Research, 56, 600-608. doi:10.1111/j.1365-2788.2011.01499.x
29.
Goodlin-JonesB. L.TangK.LiuJ.AndersT. F. (2008). Sleep patterns in preschool-age children with autism, developmental delay, and typical development. Journal of the American Academy of Child & Adolescent Psychiatry, 47, 930-938. doi:10.1097/CHI.0b013e3181799f7c
30.
*HodgeD.HoffmanC. D.SweeneyD. P.RiggsM. L. (2013). Relationship between children’s sleep and mental health in mothers of children with and without autism. Journal of Autism and Developmental Disorders, 43, 956-963. doi:10.1007/s10803-012-1639-0
31.
HoffmanC. D.SweeneyD. P.HodgeD.Lopez-WagnerM. C.LooneyL. (2009). Parenting stress and closeness: Mothers of typically developing children and mothers of children with autism. Focus on Autism and Other Developmental Disabilities, 24, 178-187. doi:10.1177/1088357609338715
32.
*HoffmanC. D.SweeneyD. P.Lopez-WagnerM. C.HodgeD.NamC. Y.BottsB. H. (2008). Children with autism: Sleep problems and mothers’ stress. Focus on Autism and Other Developmental Disabilities, 23, 155-165. doi:10.1177/1088357608316271
33.
*JellettR.WoodC. E.GialloR.SeymourM. (2015). Family functioning and behaviour problems in children with autism spectrum disorders: The mediating role of parent mental health. Clinical Psychologist, 19, 39-48. doi:10.1111/cp.12047
34.
JohnsM. W. (1991). A new method for measuring daytime sleepiness: The Epworth Sleepiness Scale. Sleep, 14, 540-545. doi:10.1093/sleep/14.6.540
35.
JohnsM. W. (1992). Reliability and factor analysis of the Epworth Sleepiness Scale. Sleep, 15, 376-381. doi:10.1093/sleep/15.4.376
36.
JohnsonK. P.MalowB. (2008). Sleep in children with autism spectrum disorders. Current Neurology & Neuroscience Reports, 8, 155-161.
37.
*KhayatzadehM. M.RostamiH. R.AmirsalariS.KarimlooM. (2013). Investigation of quality of life in mothers of children with cerebral palsy in Iran: Association with socio-economic status, marital satisfaction and fatigue. Disability and Rehabilitation, 35, 803-808. doi:10.3109/09638288.2012.708818
38.
*KimuraM.YamazakiY. (2013). The lived experience of mothers of multiple children with intellectual disabilities. Qualitative Health Research, 23, 1307-1319. doi:10.1177/1049732313504828
39.
KrakowiakP.Goodlins-JonesB.Hertz-PicciottoI.CroenL. A.HansenR. L. (2008). Sleep problems in children with autism spectrum disorders, developmental delays, and typical development: A population-based study. Journal of Sleep Research, 17, 197-206. doi:10.1111/j.1365-2869.2008.00650.x
40.
LeeJ. (2013). Maternal stress, well-being, and impaired sleep in mothers of children with developmental disabilities: A literature review. Research in Developmental Disabilities, 34, 4255-4273. doi:10.1016/j.ridd.2013.09.008
41.
LeiterV.Wyngaarden KarussM.AndersonB.WellsN. (2004). The consequences of caring: Effects of mothering a child with special needs. Journal of Family Issues, 25, 379-400. doi:10.1177/0192513X03257415
42.
LerdalA.WahlA. K.RustoenT.HanestadB. R.TorbjornM. (2005). Fatigue in the general population: A translation and test of the psychometric properties of the Norwegian version of the fatigue severity scale. Scandinavian Journal of Public Health, 33, 123-130.
43.
*Lopez-WagnerM. C.HoffmanC. D.SweeneyD. P.HodgeD.GilliamJ. E. (2008). Sleep problems of parents of typically developing children and parents of children with autism. The Journal of Genetic Psychology, 169, 245-259. doi:10.3200/GNTP.169.3.245-260
44.
MalowB. A.CroweC.HendersonL.McGrewS. G.WangL.SongY.StoneW. L. (2009). A Sleep Habits Questionnaire for children with autism spectrum disorders. Journal of Child Neurology, 24, 19-24. doi:10.1177/0883073808321044
45.
*MarxC.RodriguesE. M.RodriguesM. M.VilanovaL. C. P. (2011). Depression, anxiety and daytime sleepiness of primary caregivers of children with cerebral palsy. Revista Paulista De Pediatria, 29, 483-488. doi:10.1590/S0103-05822011000400003
46.
McBeanA. L.SchlosnagleL. (2016). Sleep, health and memory: Comparing parents of typically developing children and parents of children with special health-care needs. Journal of Sleep Research, 25, 78-87. doi:10.1111/jsr.12329
47.
McCannD.BullR.WinzenbergT. (2015). Sleep deprivation in parents caring for children with complex needs at home: A mixed methods systematic review. Journal of Family Nursing, 21, 86-118. doi:10.1177/1074840714562026
48.
*McDougallA.KerrA. M.EspieC. A. (2005). Sleep disturbance in children with Rett Syndrome: A qualitative investigation of the parental experience. Journal of Applied Research in Intellectual Disabilities, 18, 201-215. doi:10.1111/j.1468-3148.2005.00220.x
49.
*MeltzerL. J. (2008). Brief report: Sleep in parents of children with autism spectrum disorders. Journal of Pediatric Psychology, 33, 380-386. doi:10.1093/jpepsy/jsn005
50.
MeltzerL. J. (2010). Clinical management of behavioral insomnia of childhood: Treatment of bedtime problems and night wakings in young children. Behavioural Sleep Medicine, 8, 172-189. doi:10.1080/15402002.2010.487464
51.
*MeltzerL. J. (2011). Factors associated with depressive symptoms in parents of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 5, 361-367. doi:10.1016/j.rasd.2010.05.001
52.
MeltzerL. J.MindellJ. A. (2007). Relationship between child sleep disturbances and maternal sleep, mood, and parenting stress: A pilot study. Journal of Family Psychology, 21, 67-73. doi:10.1037/0893-3200.21.1.67
53.
MeltzerL. J.Montgomery-DownsH. E. (2011). Sleep in the family. Pediatric Clinics of North America, 58, 765-774. doi:10.1016/j.pcl.2011.03.010
54.
MeltzerL. J.MooreM. (2008). Sleep disruptions in parents of children and adolescents with chronic illnesses: Prevalence, causes, and consequences. Journal of Pediatric Psychology, 33, 279-291. doi:10.1093/jpepsy/jsm118
55.
MindellJ. A.MeltzerL. J.CarskadonM. A.ChervinR. D. (2009). Developmental aspects of sleep hygiene: Findings from the 2004 National Sleep Foundation Sleep in America Poll. Sleep Medicine, 10, 771-779. doi:10.1016/j.sleep.2008.07.016
56.
MindellJ. A.SadehA.KwonR.GohD. Y. (2015). Relationship between child and maternal sleep: A developmental and cross-cultural comparison. Journal of Pediatric Psychology, 40, 689-696. doi:10.1093/jpepsy/jsv008
57.
MoherD.LiberatiA.TetzlaffJ.AltmanD. G. & The PRISMA Group. (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. PLoS Medicine, 6(7), e1000097. doi:10.1371/journal.pmed.1000097
58.
*MontgomeryP.WiggsL. (2015). Definitions of sleeplessness in children with attention-deficit hyperactivity disorder (ADHD): Implications for mothers’ mental state, daytime sleepiness and sleep-related cognitions. Child: Care, Health and Development, 41, 139-146. doi:10.1111/cch.12165
59.
MorgenthalerT.AlessiC.FriedmanL.OwensJ.KapurV.BoehleckeB.. . . SwickT. J. (2007). Practice parameters for the use of actigraphy in the assessment of sleep and sleep disorders: An update for 2007. Sleep, 30, 519-529. doi:10.1093/sleep/30.4.519
OwensJ. A. (2008). Classification and epidemiology of childhood sleep disorders. Primary Care, 35, 533-546. doi:10.1016/j.pop.2008.06.003
63.
Plauché JohnsonC.MyersS. M. & the Council on Children with Disabilities. (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120, 1183-1215. doi:10.1542/peds.2007-2361
64.
*QuineL. (1991). Sleep problems in children with mental handicap. Journal of Mental Deficiency Research, 35, 269-290. doi:10.1111/j.1365-2788.1991.tb00402.x
65.
*RobinsonA. M.RichdaleA. L. (2004). Sleep problems in children with an intellectual disability: Parental perceptions of sleep problems, and views of treatment effectiveness. Child: Care, Health and Development, 30, 139-150. doi:10.1111/j.1365-2214.2004.00395.x
66.
*SeymourM.WoodC.GialloR.JellettR. (2013). Fatigue, stress and coping in mothers of children with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 43, 1547-1554. doi:10.1007/s10803-012-1701-y
67.
Simard-TremblayE.ConstantinE.GruberR.BrouilletteR. T.ShevellM. (2011). Sleep in children with Cerebral Palsy: A review. Journal of Neurology, 26, 1303-1310. doi:10.1177/0883073811408902
68.
*SmithL. E.HongJ.SeltzerM. M.GreenbergJ. S.AlmeidaD. M.BishopS. L. (2010). Daily experiences among mothers of adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 40, 167-178. doi:10.1007/s10803-009-0844-y
69.
*SmithL. E.SeltzerM. M.GreenbergJ. S. (2012). Daily health symptoms of mothers of adolescents and adults with fragile X syndrome and mothers of adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 42, 1836-1846. doi:10.1007/s10803-011-1422-7
70.
StoresG. (2014). Sleep and its disorders in children and adolescents with a neurodevelopmental disorder: A review and clinical guide. Cambridge, UK: Cambridge University Press.
71.
*TilfordJ. M.PayakachatN.KuhlthauK. A.PyneJ. M.KovacsE.BellandoJ.. . . FryeR. E. (2015). Treatment for sleep problems in children with autism and caregiver spillover effects. Journal of Autism and Developmental Disorders, 45, 3613-3623. doi:10.1007/s10803-015-2507-5
72.
Van DongenH. P. A.HurshS. R. (2011). Fatigue, performance, errors, and accidents. In KrygerM. H.RothT.DementW. C. (Eds.), Principles and practice of sleep medicine (5th ed., pp. 753-759). St. Louis, MO: Elsevier.
73.
Van Naarden BraunK.DoernbergN.SchieveL.ChristensenD.GoodmanA.Yeargin-AllsoppM. (2016). Birth prevalence of cerebral palsy: A population-based study. Pediatrics, 137(1), 1-9. doi:10.1542/peds.2015-2872
74.
VeatchO. J.Maxwell-HornA. C.MalowB. A. (2015). Sleep in autism spectrum disorders. Current Sleep Medicine Reports, 1, 131-140. doi:10.1007/s40675-015-0012-1
75.
VriendJ. L.CorkumP. V.MoonE. C.SmithI. M. (2011). Behavioural interventions for sleep problems in children with autism spectrum disorders: Current findings and future directions. Journal of Pediatric Psychology, 36, 1017-1029. doi:10.1093/jpepsy/jsr044
76.
WatsonN. F.BadrM. S.BelenkyG.BliwiseD. L.BuxtonO. M.BuysseD.. . . TasaliE. (2015). Joint consensus statement of the American Academy of sleep medicine and sleep research society on the recommended amount of sleep for a healthy adult: Methodology and discussion. Sleep, 38, 1161-1183. doi:10.5665/sleep.4886
77.
*WayteS.McCaugheyE.HolleyS.AnnazD.HillC. M. (2012). Sleep problems in children with cerebral palsy and their relationship with maternal sleep and depression. Acta Paediatrica, 101, 618-623. doi:10.1111/j.1651-2227.2012.02603.x
78.
WiggsL. (2001). Sleep problems in children with developmental disorders. Journal of the Royal Society of Medicine, 94, 177-179.
79.
*WiggsL.StoresG. (1996). Severe sleep disturbance and daytime challenging behaviour in children with severe learning disabilities. Journal of Intellectual Disability Research, 40, 518-528.
80.
*WiggsL.StoresG. (1998a). Behavioural treatment for sleep problems in children with severe learning disabilities and challenging daytime behaviour: Effect on sleep patterns of mother and child. Journal of Sleep Research, 7, 119-126. doi:10.1046/j.1365-2869.1998.00107.x
81.
*WiggsL.StoresG. (1998b). Factors affecting parental reports of the sleep patterns of children with severe learning disabilities. British Journal of Health Psychology, 3, 345-359. doi:10.1111/j.2044-8287.1998.tb00579.x
82.
*WiggsL.StoresG. (2001). Behavioural treatment for sleep problems in children with severe intellectual disabilities and daytime challenging behaviour: Effect on mothers and fathers. British Journal of Health Psychology, 6, 257-269. doi:10.1348/135910701169197
83.
WyattJ. K.CvengrosJ. A.OngJ. C. (2012). Clinical assessment of sleep-wake complaints. In MorinC. M.EspieC. A. (Eds.), The Oxford handbook of sleep and sleep disorders (pp. 383-404). New York, NY: Oxford University Press.
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
