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The Caregiver Burden Inventory as a Sleep Disturbance Screening Tool for Parents of Children with Autism Spectrum Disorder

      Highlights

      • Parents of children with ASD had higher caregiver burden.
      • Caregiver burden was associated with poor sleep quality among parents of children with ASD.
      • CBI can identify caregiver burden and help to identify the risk of being a poor sleeper in parents of children with ASD.
      • Nursing programs can reduce caregiver burden, including skills for taking care of children with ASD, positive coping, and mood self-management.
      • Education programs may use a CBI cutoff score of 26.5 as the inclusion criterion for inviting parents for further assessment and intervention.

      Abstract

      Purpose

      The study was conducted to explore the degree to which caregiver burden is associated with sleep quality in parents of children with autism spectrum disorder, and to determine a statistically valid cutoff score for the Caregiver Burden Inventory (CBI) in order to identify parents of risk of poor sleep quality.

      Design and methods

      We conducted a cross-sectional analysis. We assessed caregiver burden with the CBI, sleep quality with the Pittsburgh Sleep Quality Index, emotional status with the Hospital Anxiety and Depression Scale, and impact on family with the Impact on Family Scale. Caregiver burden was evaluated with a logistic regression analysis. The best fit model was used in a receiver operating characteristic analysis. Likelihood ratios and post-test probabilities were calculated.

      Results

      A total of 116 parents were included in this study. Higher caregiver burden was associated with a reduction in sleep quality in the logistic regression analysis (p < 0.001). The area under the curve for the univariate burden test model (best fit) was 76.70 (p < 0.001). The cutoff score for poor sleep quality was caregiver burden ≥26.50. The post-test probability of poor sleep quality increased to 82.02% from a pre-test probability of 76.72%.

      Conclusions

      Our findings suggest that caregiver burden is associated with sleep quality among parents of children with autism spectrum disorder. The findings suggest that a CBI cutoff score of 26.50 may help to detect risk of poor sleep quality in parents of children with autism spectrum disorder.

      Keywords

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      References

        • Arpaci T.
        • Altay N.
        • Toruner E.K.
        • Gunduz M.
        Symptoms and problems in children with inherited metabolic diseases and factors affecting the caregiver burden of mothers.
        Comprehensive Child and Adolescent Nursing. 2020; 43: 363-377
        • Belsky J.
        Mother-father-infant interaction: A naturalistic observational study.
        Developmental Psychology. 1979; 15: 601-607
        • Binbin J.I.
        • Tang S.
        • Rongfang Y.I.
        Caregiver burden and related factors in caregivers of children with autism.
        Chinese Journal of Behavioral Medicine and Brain Science. 2012; 21: 850-852
        • Bjelland I.
        • Dahl A.A.
        • Haug T.T.
        • Neckelmann D.
        The validity of the hospital anxiety and depression scale: An updated literature review.
        Journal of Psychosomatic Research. 2002; 52: 69-77
        • Bourke-Taylor H.
        • Pallant J.F.
        • Law M.
        • Howie L.
        Relationships between sleep disruptions, health and care responsibilities among mothers of school-aged children with disabilities.
        Journal of Paediatrics and Child Health. 2013; 49: 775-782
        • Buysse D.J.
        • Reynolds C.F.
        • Monk T.H.
        • Berman S.R.
        • Kupfer D.J.
        The Pittsburgh sleep quality index: A new instrument for psychiatric practice and research.
        Psychiatry Research. 1989; 28: 193-213
        • Carruth B.R.
        • Ziegler P.J.
        • Gordon A.
        • Barr S.I.
        Prevalence of picky eaters among infants and toddlers and their caregivers’ decisions about offering a new food.
        Journal of the American Dietetic Association. 2004; 104: 57-64
        • Christensen D.L.
        • Baio J.
        • Van Naarden Braun K.
        • Bilder D.
        • Charles J.
        • Constantino J.N.
        • Yeargin-Allsopp M.
        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. 2016; 65: 1-23
        • Chu J.
        • Richdale A.L.
        Sleep quality and psychological wellbeing in mothers of children with developmental disabilities.
        Research in Developmental Disabilities. 2009; 30: 1512-1522
        • Clarke-Stewart K.A.
        And daddy makes three: The father’s impact on mother and young child.
        Child Development. 1978; 49: 466-478
        • von Elm E.
        • Altman D.G.
        • Egger M.
        • Pocock S.J.
        • Gøtzsche P.C.
        • Vandenbroucke J.P.
        The strengthening the reporting of observational studies in epidemiology (STROBE) statement: Guidelines for reporting observational studies.
        Preventive Medicine. 2007; 45: 247-251
        • Evans B.C.
        • Belyea M.J.
        • Coon D.W.
        • Ume E.
        Activities of daily living in Mexican American caregivers: The key to continuing informal care.
        Journal of Family Nursing. 2012; 18: 439-466
        • Farmer C.
        • Thienemann M.
        • Leibold C.
        • Kamalani G.
        • Sauls B.
        • Frankovich J.
        Psychometric evaluation of the caregiver burden inventory in children and adolescents with PANS.
        Journal of Pediatric Psychology. 2018; 43: 749-757
        • Friedemann M.L.
        • Buckwalter K.C.
        Family caregiver role and burden related to gender and family relationships.
        Journal of Family Nursing. 2014; 20: 313-336
        • Giallo R.
        • Wood C.E.
        • Jellett R.
        • Porter R.
        Fatigue, wellbeing and parental self-efficacy in mothers of children with an autism spectrum disorder.
        Autism. 2013; 17: 465-480
        • Gresswell I.
        • Lally L.
        • Adamis D.
        • McCarthy G.M.
        Widening the net: Exploring social determinants of burden of informal carers.
        Irish Journal of Psychological Medicine. 2018; 35: 43-51
        • Haveman M.
        • van Berkum G.
        • Reijnders R.
        • Heller T.
        Differences in service needs, time demands, and caregiving burden among parents of persons with mental retardation across the life cycle.
        Family Relations. 1997; 46: 417-425
        • Hyman S.L.
        • Levy S.E.
        • Myers S.M.
        Identification, evaluation, and management of children with autism spectrum disorder.
        Pediatrics. 2020; 145e20193447
        • Ji B.
        • Sun M.
        • Yi R.
        • Tang S.
        Multidisciplinary parent education for caregivers of children with autism spectrum disorders.
        Archives of Psychiatric Nursing. 2014; 28: 319-326
        • Jiménez Ruiz I.
        • Moya Nicolás M.
        The family caregiver: The naturalized sense of obligation in women to be caregivers.
        Enfermería Global. 2017; 17: 420-447
        • Kent P.
        • Hancock M.J.
        Interpretation of dichotomous outcomes: Sensitivity, specificity, likelihood ratios, and pre-test and post-test probability.
        Journal of Physiotherapy. 2016; 62: 231-233
        • Kotronoulas G.
        • Wengström Y.
        • Kearney N.
        Sleep and sleep-wake disturbances in care recipient-caregiver dyads in the context of a chronic illness: A critical review of the literature.
        Journal of Pain and Symptom Management. 2013; 45: 579-594
        • Lee J.
        Maternal stress, well-being, and impaired sleep in mothers of children with developmental disabilities: A literature review.
        Research in Developmental Disabilities. 2013; 34: 4255-4273
        • Levin A.
        • Scher A.
        Sleep problems in young children with autism spectrum disorders: A study of parenting stress, mothers' sleep-related cognitions, and bedtime behaviors.
        CNS Neuroscience and Therapeutics. 2016; 22: 921-927
        • Lopez-Wagner M.C.
        • Hoffman C.D.
        • Sweeney D.P.
        • Hodge D.
        • Gilliam J.E.
        Sleep problems of parents of typically developing children and parents of children with autism.
        Journal of Genetic Psychology. 2008; 169: 245-260
        • Luijkx J.
        • van der Putten A.A.J.
        • Vlaskamp C.
        A valuable burden? The impact of children with profound intellectual and multiple disabilities on family life.
        Journal of Intellectual & Developmental Disability. 2019; 44: 184-189
        • Lyall K.
        • Croen L.
        • Daniels J.
        • Fallin M.D.
        • Ladd-Acosta C.
        • Lee B.K.
        • Newschaffer C.
        The changing epidemiology of autism spectrum disorders.
        Annual Review of Public Health. 2017; 38: 81-102
        • Mak W.W.S.
        • Ho G.S.M.
        Caregiving perceptions of Chinese mothers of children with intellectual disability in Hong Kong.
        Journal of Applied Research in Intellectual Disabilities. 2007; 20: 145-156
        • Marsack-Topolewski C.N.
        • Church H.L.
        Impact of caregiver burden on quality of life for parents of adult children with autism spectrum disorder.
        American Journal on Intellectual and Developmental Disabilities. 2019; 124: 145-156
        • Marsack-Topolewski C.N.
        • Samuel P.S.
        Mediating effects of social support on quality of life for parents of adults with autism.
        Journal of Autism and Developmental Disorders. 2017; 47: 2378-2389
        • Masi A.
        • DeMayo M.M.
        • Glozier N.
        • Guastella A.J.
        An overview of autism spectrum disorder, heterogeneity and treatment options.
        Neuroscience Bulletin. 2017; 43: 183-193
        • Mcbride B.A.
        • Mills G.
        A comparison of mother and father involvement with their preschool age children.
        Early Childhood Research Quarterly. 1993; 8: 457-477
        • McCann D.
        • Bull R.
        • Winzenberg T.
        The daily patterns of time use for parents of children with complex needs: A systematic review.
        Journal of Child Health Care. 2012; 46: 26-52
        • McQuillan M.E.
        • Bates J.E.
        • Staples A.D.
        • Deater-Deckard K.
        Maternal stress, sleep, and parenting.
        Journal of Family Psychology. 2019; 33: 349-359
        • Meltzer L.J.
        • Booster G.D.
        Sleep disturbance in caregivers of children with respiratory and atopic disease.
        Journal of Pediatric Psychology. 2016; 41: 643-650
        • Micsinszki S.K.
        • Ballantyne M.
        • Cleverley K.
        • Green P.
        • Stremler R.
        Sleep outcomes for parents of children with neurodevelopmental disabilities: A systematic review.
        Journal of Family Nursing. 2018; 24: 217-249
        • Mollayeva T.
        • Thurairajah P.
        • Burton K.
        • Mollayeva S.
        • Shapiro C.M.
        • Colantonio A.
        The Pittsburgh sleep quality index as a screening tool for sleep dysfunction in clinical and non-clinical samples: A systematic review and meta-analysis.
        Sleep Medicine Reviews. 2016; 25: 52-73
        • Murphy N.A.
        • Christian B.
        • Caplin D.A.
        • Young P.C.
        The health of caregivers for children with disabilities: Caregiver perspectives.
        Child: Care, Health and Development. 2007; 33: 180-187
        • Naes T.
        • Mevik B.-H.
        Understanding the collinearity problem in regression and discriminant analysis.
        Journal of Chemometrics. 2001; 15: 413-426
        • Novak M.
        Application of a multidimensional caregiver burden inventory.
        Gerontologist. 1989; 29: 798-803
        • Picardi A.
        • Gigantesco A.
        • Tarolla E.
        • Stoppioni V.
        • Cerbo R.
        • Cremonte M.
        • Alessandri G.
        • Lega I.
        • Nardocci F.
        Parental burden and its correlates in families of children with autism spectrum disorder: A multicentre study with two comparison groups.
        Clinical Practice and Epidemiology in Mental Health. 2018; 14: 143-176
        • Ringle C.M.
        • Wende S.
        • Becker J.M.
        SmartPLS 3.
        SmartPLS, Bönningstedt2015 (Retrieved from)
        • Sasaki T.
        • Hazen N.
        • Swann J.R.W.B.
        The supermom trap: Do involved dads erode moms’ self-competence?.
        Personal Relationships. 2010; 17: 71-79
        • Stein R.E.K.
        • Riessman C.K.
        The development of an impact-on-family scale: Preliminary findings.
        Medical Care. 1980; 18: 465-472
        • Van Durme T.
        • Macq J.
        • Jeanmart C.
        • Gobert M.
        Tools for measuring the impact of informal caregiving of the elderly: A literature review.
        International Journal of Nursing Studies. 2012; 48: 490-504
        • Wayte S.
        • McCaughey E.
        • Holley S.
        • Annaz D.
        • Hill C.M.
        Sleep problems in children with cerebral palsy and their relationship with maternal sleep and depression.
        Acta Paediatrica (Oslo, Norway: 1992). 2012; 101: 618-623