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Economic burdens on parents of children with autism: a literature review

Published online by Cambridge University Press:  11 November 2019

Xiaoli Liao Open the ORCID record for Xiaoli Liao [Opens in a new window]  and
Yamin Li
Xiaoli Liao
Affiliation:
Xiangya Nursing School, Central South University, Changsha, Hunan, China Department of Nursing, The Second Xiangya Hospital, Central South University, Changsha, Hunan, China
Yamin Li*
Affiliation:
Department of Nursing, The Second Xiangya Hospital, Central South University, Changsha, Hunan, China
*
*Yamin Li, Email: [email protected]
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Abstract

This review aims to summarize evidence from published articles regarding the economic burdens on parents of children diagnosed with autism to elaborate on current research status, discern key findings and provide suggestions for future studies. A total of 1024 records were identified through our systematic literature research, and 33 studies were included in the review. The 33 included studies reported findings from 10 different countries around the world. These articles (published from 2003 to 2017) used a variety of research methods, including quantitative (n = 26), qualitative (n = 4), and mixed (n = 3) study designs. In summary, parents of autistic children were susceptible to adverse employment impacts and increased financial burdens, especially mothers. More attention should be given to the development of appropriate medical resource allocation and the alleviation of economic burdens on parents of children with autism.

Keywords

Autismeconomic burdensfinancial burdensparents
Type
Review
Information
CNS Spectrums , Volume 25 , Issue 4 , August 2020 , pp. 468 - 474
Copyright
© Cambridge University Press 2019

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References

American Psychiatric Association. Diagnostic and statistical manual of mental disorders (DSM-5®). American Psychiatric Publ. 2013.Google Scholar
Moher, D, Shamseer, L, Clarke, M, et al.Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015 statement. Syst Rev. 2015; 4(1):1.Google Scholar
Callander, EJ, Lindsay, DB (2017). The impact of childhood autism spectrum disorder on parent’s labor force participation: Can parents be expected to be able to re-join the labor force? Autism. 201;1362–1366.Google Scholar
Roddy, A, O’Neill, C. The economic costs and its predictors for childhood autism spectrum disorders in Ireland: How is the burden distributed? Autism. 2008;136–151.Google Scholar
Young, A, Ruble, L, Mcgrew, J.Public vs. private insurance: Cost, use, accessibility, and outcomes of services for children with autism spectrum disorders. Research in Autism Spectrum Disorders. 2009; 3(4):1023–1033.Google Scholar
Horlin, C, Falkmer, M, Parsons, R, et al.The Cost of Autism Spectrum Disorders. PLoS ONE.2014; 9(9): e106552.Google Scholar
Parish, SL, Thomas, KC, Rose, R, et al.State Medicaid spending and financial burden of families raising children with autism. Intellectual & Developmental Disabilities. 2012; 50(6): 441.Google Scholar
Wang, J, Zhou, X, Xia, W, et al.Parent-reported health care expenditures associated with autism spectrum disorders in Heilongjiang province, China. BMC Health Services Research. 2012; 12(1): 7.Google Scholar
Cidav, Z, Marcus, SC, Mandell, DSImplications of Childhood Autism for Parental Employment and Earnings. PEDIATRICS. 2012; 129(4): 617–623.Google Scholar
Sharpe, DL, Baker, DL. Financial Issues Associated with Having a Child with Autism. Journal of Family and Economic Issues. 2007; 28(2): 247–264.Google Scholar
Phelps, KW, Hodgson, JL, Mccammon, SL, et al.Caring for an individual with autism disorder: a qualitative analysis. Journal of Intellectual and Developmental Disability. 2009; 34(1): 27–35.Google Scholar
Tait, KJ, Mundia, L.The impact of a child with autism on the Bruneian family system. International Journal of Special Education. 2012; 27(3): 199– 212.Google Scholar
Zablotsky, B, Kalb, LG, Freedman, B, et al.Health Care Experiences and Perceived Financial Impact Among Families of Children With an Autism Spectrum Disorder. Psychiatric Services. 2014; 65(3): 395–398.Google Scholar
Saunders, BS, Tilford, JM, Fussell, JJ, et al.Financial and employment impact of intellectual disability on families of children with autism. Families, Systems, & Health. 2015; 33(1): 36–45.Google Scholar
Parish, SL, Thomas, KC, Williams, CS, et al.Autism and families’ financial burden: The association with health insurance coverage. American journal on intellectual and developmental disabilities. 2015; 120(2): 166–175.Google Scholar
Thomas, KC, Williams, CS, Dejong, N, et al.Examination of Parent Insurance Ratings, Child Expenditures, and Financial Burden Among Children With Autism: A Mismatch Suggests New Hypotheses to Test. Pediatrics. 2016; 137(Suppl 2): S186–198.Google Scholar
Chatterji, P, Decker, SL, Markowitz, S.The Effects of Mandated Health Insurance Benefits for Autism on Out-of-Pocket Costs and Access to Treatment. Journal of Policy Analysis and Management. 2015; 34(2): 328–353.Google Scholar
Xiong, N, Yang, L, Yu, Y, et al.Investigation of raising burden of children with autism, physical disability and mental disability in China. Research in developmental disabilities. 2011; 32(1): 306–311.Google Scholar
Ouyang, L, Grosse, SD, Riley, C, et al.A comparison of family financial and employment impacts of fragile X syndrome, autism spectrum disorders, and intellectual disability. Research in Developmental Disabilities. 2014; 35(7): 1518–1527.Google Scholar
Lavelle, TA, Weinstein, MC, Newhouse, JP, et al.Economic Burden of Childhood Autism Spectrum Disorders. PEDIATRICS. 2014; 133(3): e520–e529.Google Scholar
Montes, G, Halterman, JSChild Care Problems and Employment Among Families With Preschool-Aged Children With Autism in the United States. PEDIATRICS. 2008; 122(1): e202–e208.Google Scholar
Hartley, SL, Mihaila, I, Otalorafadner, HS, et al.Division of Labor in Families of Children and Adolescents with Autism Spectrum Disorder. Family Relations. 2014; 63(5): 627–638.Google Scholar
Hill, EL, Jones, AP, Lang, J, et al.Employment experiences of parents of children with ASD or ADHD: an exploratory study. International Journal of Developmental Disabilities. 2015; 61(3): 166–176.Google Scholar
Houser, L, Mccarthy, M, awer, L, et al.A challenging fit: employment, childcare, and therapeutic support in families of children with autism spectrum disorders. Journal of Social Service Research. 2014; 40(5): 681–698.Google Scholar
Montes, G, Halterman, JSAssociation of Childhood Autism Spectrum Disorders and Loss of Family Income. PEDIATRICS.2008; 121(4): e821–e826.Google Scholar
Ou, JJ, Shi, LJ, Xun, GL, et al.Employment and financial burden of families with preschool children diagnosed with autism spectrum disorders in urban China: results from a descriptive study. BMC Psychiatry. 2015; 15(1): 3.Google Scholar
Baker, DL, Drapela, LAMostly the mother: Concentration of adverse employment effects on mothers of children with autism. Social Science Journal. 2010; 47(3): 578–592.Google Scholar
Mccabe H. Employment Experiences, Perspectives, and Wishes of Mothers of Children with Autism in the People’s Republic of China. Journal of Applied Research in Intellectual Disabilities. 2010; 23(2): 122–131.Google Scholar
Mcauliffe, T, Cordier, R, Vaz, S, et al.Quality of Life, Coping Styles, Stress Levels, and Time Use in Mothers of Children with Autism Spectrum Disorders: Comparing Single Versus Coupled Households. Journal of Autism & Developmental Disorders. 2017; 47 (10): 3189–3203.Google Scholar
Hodgetts, S, Mcconnell, D, Zwaigenbaum, L, et al.The impact of autism services on mothers’ occupational balance and participation. Otjr Occupation Participation Health. 2014; 34(2): 1–13.Google Scholar
Mcevilly, M, Wicks, S, Dalman, C.Sick Leave and Work Participation Among Parents of Children with Autism Spectrum Disorder in the Stockholm Youth Cohort: A Register Linkage Study in Stockholm, Sweden. Journal of Autism and Developmental Disorders. 2015; 45(7): 2157–2167.Google Scholar
Al-Farsi , Y, Waly, M, Al-Sharbati , M, et al.Variation in socio-economic burden for caring of children with autism spectrum disorder in Oman: caregiver perspectives. Journal of Autism & Developmental Disorders. 2013; 43(5): 1214–1221.Google Scholar
Jarbrink, K, Fombonne, E, Knapp, M.Measuring the parental, service and cost impacts of children with autistic spectrum disorder: A pilot study. Journal of Autism and Developmental Disorders. 2003; 33: 395– 402.Google Scholar
Leslie, DL, Iskandarani, K, Velott, DL, et al.Medicaid Waivers Targeting Children With Autism Spectrum Disorder Reduce The Need For Parents To Stop Working. Health Affairs. 2017; 36(2): 282–288Google Scholar