Family caregivers of children with tracheostomies or home ventilators are more likely to experience poor sleep quality when undertaking the full responsibility of caring for fragile children. This scoping review aimed to identify the sleep quality, related factors, and their impact on the health of family caregivers of children with tracheostomies or home ventilators. The included studies (N = 16) were retrieved through PubMed, CINAHL, Cochrane Library, Embase, PsycINFO, and Web of Science. Family caregivers’ sleep were low in quality, frequently disturbed, and insufficient. Their sleep quality was related to fatigue, anxiety, depression, family functioning, and health-related quality of life. The sleep disturbing factors were classified as child, caregiver, or environment-related, which were mutually interrelated. This review emphasizes the need to develop nursing interventions to both improve the sleep quality of family caregivers and the health of children with tracheostomies or home ventilators based on an in-depth understanding of the family’s context.
AdlyA.YoussefT. A.El-BegermyM. M.YounisH. M. (2018). Timing of tracheostomy in patients with prolonged endotracheal intubation: A systematic review. European Archives of Oto-Rhino-Laryngology: Official Journal of the European Federation of Oto-Rhino-Laryngological Societies (Eufos):Affiliated With the German Society for Oto-Rhino-Laryngology—Head and Neck Surgery, 275(3), 679–690. https://doi.org/10.1007/s00405-017-4838-7
2.
AminR.MacLuskyI.ZielinskiD.AdderleyR.CarnevaleF.ChiangJ.CôtéA.DanielsC.DaigneaultP.HarrisonC.KatzS.KeiltyK.MajaesicC.MoraesT. J.PriceA.RadhakrishnanD.RapoportA.SpierS.ThavagnanamS. . . . Canadian Thoracic Society. (2017). Pediatric home mechanical ventilation: A Canadian Thoracic Society clinical practice guideline executive summary. Canadian Journal of Respiratory, Critical Care, and Sleep Medicine, 1(1), 7–36. https://doi.org/10.1080/24745332.2017.1300463
3.
AminR.SayalP.SyedF.ChavesA.MoraesT. J.MacLuskyI. (2014). Pediatric long-term home mechanical ventilation: Twenty years of follow-up from one Canadian center. Pediatric Pulmonology, 49(8), 816–824. https://doi.org/10.1002/ppul.22868
4.
AmirnovinR.AghamohammadiS.RileyC.WooM. S.Del CastilloS. (2018). Analysis of a pediatric home mechanical ventilator population. Respiratory Care, 63(5), 558–564. https://doi.org/10.4187/respcare.05644
5.
BoettcherJ.DeneckeJ.BarkmannC.Wiegand-GrefeS. (2020). Quality of life and mental health in mothers and fathers caring for children and adolescents with rare diseases requiring long-term mechanical ventilation. International Journal of Environmental Research and Public Health, 17(23), 8975. https://doi.org/10.3390/ijerph17238975
6.
BorgesE. F.Borges-JúniorL. H.CarvalhoA. J. L.FerreiraH. M.HattoriW. T.de Oliveira AzevedoV. M. G. (2020). Invasive home mechanical ventilation: 10-year experience of a pediatric home care Service. Respiratory Care, 65(12), 1800–1804. https://doi.org/10.4187/respcare.07406
7.
BrooksJ. L.BeilH.BeeberL. S. (2015). Maternal depressive symptoms and healthcare expenditures for publicly insured children with chronic health conditions. Maternal and Child Health Journal, 19(4), 790–797. https://doi.org/10.1007/s10995-014-1570-4
8.
BuysseD. J.ReynoldsC. F.IIIMonkT. H.BermanS. R.KupferD. J. (1989). The Pittsburgh Sleep Quality Index: A new instrument for psychiatric practice and research. Psychiatry Research, 28(2), 193–213. https://doi.org/10.1016/0165-1781(89)90047-4
9.
*CadartM.De SanctisL.KhiraniS.AmaddeoA.OussL.FaurouxB. (2018). Parents of children referred to a sleep laboratory for disordered breathing reported anxiety, daytime sleepiness and poor sleep quality. Acta Paediatrica, 107(7), 1253–1261. https://doi.org/10.1111/apa.14353
10.
ChanE.-Y.GlassG.ChuaK.-C.AliN.LimW.-S. (2018). Relationship between mastery and caregiving competence in protecting against burden, anxiety and depression among caregivers of frail older adults. The Journal of Nutrition, Health & Aging, 22(10), 1238–1245. https://doi.org/10.1007/s12603-018-1098-1
11.
*ChandranA.SikkaK.ThakarA.LodhaR.IruguD.KumarR.SharmaS. C. (2021). The impact of pediatric tracheostomy on the quality of life of caregivers. International Journal of Pediatric Otorhinolaryngology, 149, 110854. https://doi.org/10.1016/j.ijporl.2021.110854
12.
ChaputJ. P.DutilC.Sampasa-KanyingaH. (2018). Sleeping hours: What is the ideal number and how does age impact this?Nature and Science of Sleep, 10, 421–430. https://doi.org/10.2147/NSS.S163071
13.
ChauS.-K.YungA. W.-Y.LeeS.-L. (2017). Long-term management for ventilator-assisted children in Hong Kong: 2 decades’ experience. Respiratory Care, 62(1), 54–64. https://doi.org/10.4187/respcare.04989
14.
*ChoiY. H.KimM. S.KimC. H.SongI. G.ParkJ. D.In SuhD.ShinH.-I. (2020). Looking into the life of technology-dependent children and their caregivers in Korea: Lifting the burden of too many responsibilities. BMC Pediatrics, 20(1), 486. https://doi.org/10.1186/s12887-020-02388-z
15.
DanielL. C.WalshC. M.MeltzerL. J.BarakatL. P.KlossJ. D. (2018). The relationship between child and caregiver sleep in acute lymphoblastic leukemia maintenance. Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer, 26(4), 1123–1132. https://doi.org/10.1007/s00520-017-3933-z
16.
EvansC.FidlerA.BakerD.WagnerM.FedeleD. (2022). Sleep and asthma management in youth with poorly-controlled asthma and their caregivers: A qualitative approach. The Journal of Asthma: Official Journal of the Association for the Care of Asthma, 59(6), 1131–1138. https://doi.org/10.1080/02770903.2021.1914650
17.
FeeleyC. A.SereikaS. M.ChasensE. R.SiminerioL.Charron-ProchownikD.MuzumdarR. H.ViswanathanP. (2021). Sleep in parental caregivers and children with type 1 diabetes. The Journal of School Nursing, 37(4), 259–269. https://doi.org/10.1177/1059840519865942
18.
FoyC. M.KoncickiM. L.EdwardsJ. D. (2020). Liberation and mortality outcomes in pediatric long-term ventilation: A qualitative systematic review. Pediatric Pulmonology, 55(11), 2853–2862. https://doi.org/10.1002/ppul.25003
19.
GonzálezR.BustinzaA.FernandezS. N.GarcíaM.RodriguezS.García-TeresaM. Á.GaboliM.GarcíaS.SardónO.GarcíaD.SalcedoA.RodríguezA.LunaM. C.HernándezA.GonzálezC.MedinaA.PérezE.CallejónA.ToledoJ. D. . . . Spanish Children Home Mechanical Ventilation Multicentric Study Group. (2017). Quality of life in home-ventilated children and their families. European Journal of Pediatrics, 176(10), 1307–1317. https://doi.org/10.1007/s00431-017-2983-z
20.
*HopkinsC.WhetstoneS.FosterT.BlaneyS.MorrisonG. (2009). The impact of paediatric tracheostomy on both patient and parent. International Journal of Pediatric Otorhinolaryngology, 73(1), 15–20. https://doi.org/10.1016/j.ijporl.2008.09.010
Israelsson-SkogsbergÅ.HedénL.LindahlB.LaaksoK. (2018). “I’m almost never sick”: Everyday life experiences of children and young people with home mechanical ventilation. Journal of Child Health Care, 22(1), 6–18. https://doi.org/10.1177/1367493517749328
24.
*Israelsson-SkogsbergÅ.PerssonC.MarkströmA.HedénL. (2020). Children with home mechanical ventilation—Parents’ health-related quality of life, family functioning and sleep. Acta Paediatrica, 109(9), 1807–1814. https://doi.org/10.1111/apa.15177
25.
KeiltyK.CohenE.HoM.SpaldingK.StremlerR. (2015). Sleep disturbance in family caregivers of children who depend on medical technology: A systematic review. Journal of Pediatric Rehabilitation Medicine, 8(2), 113–130. https://doi.org/10.3233/PRM-150325
26.
KeiltyK.DanielsC. (2018). Section 13: The published experience and outcomes of family caregivers when a child is on home mechanical ventilation. Canadian Journal of Respiratory, Critical Care, and Sleep Medicine, 2(Supp. 1), 88–93. https://doi.org/10.1080/24745332.2018.1494994
KonjarskiM.MurrayG.LeeV. V.JacksonM. L. (2018). Reciprocal relationships between daily sleep and mood: A systematic review of naturalistic prospective studies. Sleep Medicine Reviews, 42, 47–58. https://doi.org/10.1016/j.smrv.2018.05.005
29.
*KusterP. A.BadrL. K.ChangB. L.WuerkerA. K.BenjaminA. E. (2004). Factors influencing health promoting activities of mothers caring for ventilator-assisted children. Journal of Pediatric Nursing, 19(4), 276–287. https://doi.org/10.1016/j.pedn.2004.05.009
30.
LindahlB.LindbladB.-M. (2011). Family members’ experiences of everyday life when a child is dependent on a ventilator: A metasynthesis study. Journal of Family Nursing, 17(2), 241–269. https://doi.org/10.1177/1074840711405392
31.
LiuP.-P.YinP.ZhuY.-H.ZhangS.ShengG.-M. (2021). The correlation of family resilience with sleep quality and depression of parents of children with epilepsy. Journal of Pediatric Nursing, 56, e49–e54. https://doi.org/10.1016/j.pedn.2020.07.016
32.
*MahJ. K.ThannhauserJ. E.McNeilD. A.DeweyD. (2008). Being the lifeline: The parent experience of caring for a child with neuromuscular disease on home mechanical ventilation. Neuromuscular Disorders, 18(12), 983–988. https://doi.org/10.1016/j.nmd.2008.09.001
33.
MantuaJ.GravelN.SpencerR. M. C. (2016). Reliability of sleep measures from four personal health monitoring devices compared to research-based actigraphy and polysomnography. Sensors, 16(5), 646. https://doi.org/10.3390/s16050646
34.
*MeltzerL. J.BoosterG. D. (2016). Sleep disturbance in caregivers of children with respiratory and atopic disease. Journal of Pediatric Psychology, 41(6), 643–650. https://doi.org/10.1093/jpepsy/jsw016
35.
*MeltzerL. J.BoroughsD. S.DownesJ. J. (2010). The relationship between home nursing coverage, sleep, and daytime functioning in parents of ventilator-assisted children. Journal of Pediatric Nursing, 25(4), 250–257. https://doi.org/10.1016/j.pedn.2009.01.007
36.
*MeltzerL. J.MindellJ. A. (2006). Impact of a child’s chronic illness on maternal sleep and daytime functioning. Archives of Internal Medicine, 166(16), 1749–1755. https://doi.org/10.1001/archinte.166.16.1749
37.
MeltzerL. J.MooreM. (2008). Sleep disruptions in parents of children and adolescents with chronic illnesses: Prevalence, causes, and consequences. Journal of Pediatric Psychology, 33(3), 279–291. https://doi.org/10.1093/jpepsy/jsm118
38.
MeltzerL. J.PuglieseC. E. (2017). Sleep in young children with asthma and their parents. Journal of Child Health Care, 21(3), 301–311. https://doi.org/10.1177/1367493517712064
39.
*MeltzerL. J.Sanchez-OrtunoM. J.EdingerJ. D.AvisK. T. (2015). Sleep patterns, sleep instability, and health related quality of life in parents of ventilator-assisted children. Journal of Clinical Sleep Medicine, 11(3), 251–258. https://doi.org/10.5664/jcsm.4538
40.
*MontagninoB. A.MauricioR. V. (2004). The child with a tracheostomy and gastrostomy: Parental stress and coping in the home—A pilot study. Pediatric Nursing, 30(5), 373–401.
41.
Muñeton-CastañoY. F.HullJ. H.GrahamR. J. (2022). Tele-mental health intervention for caregivers of children on home ventilation: A randomized control trial. Child: Care, Health and Development, 48(1), 80–87. https://doi.org/10.1111/cch.12905
42.
*PaddeuE. M.GigantiF.PiumelliR.De MasiS.FilippiL.ViggianoM. P.DonzelliG. (2015). Sleeping problems in mothers and fathers of patients suffering from congenital central hypoventilation syndrome. Sleep and Breathing, 19(3), 1057–1064. https://doi.org/10.1007/s11325-014-1080-z
43.
*PageB. F.HintonL.HarropE.VincentC. (2020). The challenges of caring for children who require complex medical care at home: “The go between for everyone is the parent and as the parent that's an awful lot of responsibility.”Health Expectations, 23(5), 1144–1154. https://doi.org/10.1111/hex.13092
44.
PageM. J.McKenzieJ. E.BossuytP. M.BoutronI.HoffmannT. C.MulrowC. D.ShamseerL.TetzlaffJ. M.AklE. A.BrennanS. E.ChouR.GlanvilleJ.GrimshawJ. M.HróbjartssonA.LaluM. M.LiT.LoderE. W.Mayo-WilsonE.McDonaldS.. . .MoherD. (2021). The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. International Journal of Surgery, 88, 105906. https://doi.org/10.1016/j.ijsu.2021.105906
45.
PetersM. D. J.MarnieC.TriccoA. C.PollockD.MunnZ.AlexanderL.McInerneyP.GodfreyC. M.KhalilH. (2020). Updated methodological guidance for the conduct of scoping reviews. JBI Evidence Synthesis, 18(10), 2119–2126. https://doi.org/10.11124/JBIES-20-00167
46.
PollockD.PetersM. D. J.KhalilH.McInerneyP.AlexanderL.TriccoA. C.EvansC.de MoraesÉ. B.GodfreyC. M.PieperD.SaranA.SternC.MunnZ. (2022). Recommendations for the extraction, analysis, and presentation of results in scoping reviews. JBI Evidence Synthesis, 21(3), 520–532. https://doi.org/10.11124/JBIES-22-00123
47.
PrickettK.DeshpandeA.PaschalH.SimonD.HebbarK. B. (2019). Simulation-based education to improve emergency management skills in caregivers of tracheostomy patients. International Journal of Pediatric Otorhinolaryngology, 120, 157–161. https://doi.org/10.1016/j.ijporl.2019.01.020
48.
ReutrakulS.Van CauterE. (2014). Interactions between sleep, circadian function, and glucose metabolism: Implications for risk and severity of diabetes. Annals of the New York Academy of Sciences, 1311(1), 151–173. https://doi.org/10.1111/nyas.12355
49.
*SeearM.KapurA.WensleyD.MorrisonK.BehrooziA. (2016). The quality of life of home-ventilated children and their primary caregivers plus the associated social and economic burdens: A prospective study. Archives of Disease in Childhood, 101(7), 620–627. https://doi.org/10.1136/archdischild-2015-309796
50.
ShayS.ShapiroN. L.BhattacharyyaN. (2018). Revisits after pediatric tracheotomy: Airway concerns result in returns. International Journal of Pediatric Otorhinolaryngology, 104, 5–9. https://doi.org/10.1016/j.ijporl.2017.10.021
51.
ShesserL.BrodeckiD.LebetR. (2020). Family perceptions of quality of life for pediatric home ventilator patients. Home Health Care Management & Practice, 32(3), 148–155. https://doi.org/10.1177/1084822320907911
52.
SmithM. T.McCraeC. S.CheungJ.MartinJ. L.HarrodC. G.HealdJ. L.CardenK. A. (2018). Use of actigraphy for the evaluation of sleep disorders and circadian rhythm sleep-wake disorders: An American Academy of Sleep Medicine systematic review, meta-analysis, and GRADE assessment. Journal of Clinical Sleep Medicine, 14(7), 1209–1230. https://doi.org/10.5664/jcsm.7228
53.
SobotkaS. A.LynchE.PeekM. E.GrahamR. J. (2020). Readmission drivers for children with medical complexity: Home nursing shortages cause health crises. Pediatric Pulmonology, 55(6), 1474–1480. https://doi.org/10.1002/ppul.24744
54.
SpratlingR.LeeJ. (2020). Caregivers experiences in symptom management for their children who require medical technology at home. Journal for Specialists in Pediatric Nursing, 25(1), e12275. https://doi.org/10.1111/jspn.12275
55.
SterniL. M.CollacoJ. M.BakerC. D.CarrollJ. L.SharmaG. D.BrozekJ. L.FinderJ. D.AckermanV. L.ArensR.BoroughsD. S.CarterJ.DaigleK. L.DoughertyJ.GozalD.KevillK.KravitzR. M.KrisemanT.MacLuskyI.Rivera-SpoljaricK.. . .HalbowerA. C. (2016). An official American thoracic society clinical practice guideline: Pediatric chronic home invasive ventilation. American Journal of Respiratory and Critical Care Medicine, 193(8), e16–e35. https://doi.org/10.1164/rccm.201602-0276ST
56.
*TapiaN. S.ApipM. P. M.MolinaY.GonzálezX.FaríasA.PaivaR. (2018). Sleep quality in informal caregivers of children with invasive and non-invasive mechanical ventilation. Revista de Enfermagem Referência, 4(19), 21–28. https://doi.org/10.12707/RIV18049
57.
TietzeA. L.ZernikowB.MichelE.BlankenburgM. (2014). Sleep disturbances in children, adolescents, and young adults with severe psychomotor impairment: Impact on parental quality of life and sleep. Developmental Medicine & Child Neurology, 56(12), 1187–1193. https://doi.org/10.1111/dmcn.12530
58.
TriccoA. C.LillieE.ZarinW.O’BrienK. K.ColquhounH.LevacD.MoherD.PetersM. D. J.HorsleyT.WeeksL.HempelS.AklE. A.ChangC.McGowanJ.StewartL.HartlingL.AldcroftA.WilsonM. G.GarrittyC.. . .StrausS. E. (2018). PRISMA extension for scoping reviews (PRISMA-ScR): Checklist and explanation. Annals of Internal Medicine, 169(7), 467–473. https://doi.org/10.7326/m18-0850
59.
VandepitteS.PutmanK.Van Den NoortgateN.VerhaegheS.AnnemansL. (2019). Effectiveness of an in-home respite care program to support informal dementia caregivers: A comparative study. International Journal of Geriatric Psychiatry, 34(10), 1534–1544. https://doi.org/10.1002/gps.5164
60.
Van NameM. A.HilliardM. E.BoyleC. T.MillerK. M.DeSalvoD. J.AndersonB. J.LaffelL. M.WoernerS. E.DiMeglioL. A.TamborlaneW. V. (2018). Nighttime is the worst time: Parental fear of hypoglycemia in young children with type 1 diabetes. Pediatric Diabetes, 19(1), 114–120. https://doi.org/10.1111/pedi.12525
61.
WestwoodE. L.HutchinsJ. V.ThevasagayamR. (2019). Quality of life in paediatric tracheostomy patients and their caregivers—A cross-sectional study. International Journal of Pediatric Otorhinolaryngology, 127, 109606. https://doi.org/10.1016/j.ijporl.2019.109606
62.
WhitmoreK. E.SnethenJ. (2018). Respite care services for children with special healthcare needs: Parental perceptions. Journal for Specialists in Pediatric Nursing, 23(3), e12217. https://doi.org/10.1111/jspn.12217
63.
YuH.MameyM. R.RussellC. J. (2017). Factors associated with 30-day all-cause hospital readmission after tracheotomy in pediatric patients. International Journal of Pediatric Otorhinolaryngology, 103, 137–141. https://doi.org/10.1016/j.ijporl.2017.10.019
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