References
- Lach L, Kohen D, Garner R, et al. The health and psychosocial functioning of caregivers of children with neurodevelopmental disorders. Disabil Rehabil. 2009;31(8):607–618.
- Schertz M, Karni-Visel Y, Tamir A, et al. Family quality of life among families with a child who has a severe neurodevelopmental disability: impact of family and child socio-demographic factors. Res Dev Disabil. 2016;53-54:95–106.
- Vasilopoulou E, Nisbet J. The quality of life of parents of children with autism spectrum disorder: a systematic review. Res Autism Spectr Disord. 2016;23:36–49.
- Morris C, Janssens A, Tomlinson R, et al. Towards a definition of neurodisability: a Delphi survey. Dev Med Child Neurol. 2013;55(12):1103–1108.
- Stein RE, Jessop DJ. What diagnosis does not tell: the case for a noncategorical approach to chronic illness in childhood. Soc Sci Med. 1989;29(6):769–778.
- Sentenac M, Lach LM, Gariepy G, et al. Education disparities in young people with and without neurodisabilities. Dev Med Child Neurol. 2019;61(2):226–231.
- Arim RG, Kohen DE, Garner RE, et al. Psychosocial functioning in children with neurodevelopmental disorders and externalizing behavior problems. Disabil Rehabil. 2015;37(4):345–354.
- Garner RE, Arim RG, Kohen DE, et al. Parenting children with neurodevelopmental disorders and/or behaviour problems. Child Care Health Dev. 2013;39(3):412–421.
- Miller A, Shen J, Mâsse L. Child functional characteristics explain child and family outcomes better than diagnosis: population-based study of children with autism or other neurodevelopmental disorders/disabilities. Statistics Canada. 2016;27(6):9–18.
- Kratz L, Uding N, Trahms CM, et al. Managing childhood chronic illness: parent perspectives and implications for parent-provider relationships. Fam Syst Health. 2009;27(4):303–313.
- Wiart L, Ray L, Darrah J, et al. Parents' perspectives on occupational therapy and physical therapy goals for children with cerebral palsy. Disabil Rehabil. 2010;32(3):248–258.
- Nygård C, Clancy A. Unsung heroes, flying blind—a metasynthesis of parents’ experiences of caring for children with special health-care needs at home. J Clin Nurs. 2018;27(15–16):3179–3196.
- Ray LD. Parenting and childhood chronicity: making visible the invisible work. J Pediatr Nurs. 2002;17(6):424–438.
- DePape A-M, Lindsay S. Parents’ experiences of caring for a child with autism spectrum disorder. Qual Health Res. 2015;25(4):569–583.
- Hayles E, Harvey D, Plummer D, et al. Parents’ experiences of health care for their children with cerebral palsy. Qual Health Res. 2015;25(8):1139–1154.
- Hayes SA, Watson SL. The impact of parenting stress: a meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. J Autism Dev Disord. 2013;43(3):629–642.
- Miodrag N, Hodapp RM. Chronic stress and health among parents of children with intellectual and developmental disabilities. Curr Opin Psychiatry. 2010;23(5):407–411.
- Lloyd S, Osborne LA, Reed P. Personal experiences disclosed by parents of children with autism spectrum disorder: a youtube analysis. Res Autism Spectr Disord. 2019;64:13–22.
- Woodgate RL, Ateah C, Secco L. Living in a world of our own: the experience of parents who have a child with autism. Qual Health Res. 2008;18(8):1075–1083.
- Lach L. The family does matter. In: Ronen GM, Rosenbaum PL, editors. Life quality outcomes in children and young people with neurological and developmental conditions. Concepts, evidence and practice. London: MacKeith Press; 2013. p. 136–153.
- Ritzema AM, Lach LM, Nicholas D, et al. A model of well-being for children with neurodevelopmental disorders: parental perceptions of functioning, services, and support. Child Care Health Dev. 2018;44(2):240–248.
- Gardiner E, Miller AR, Lach LM. Family impact of childhood neurodevelopmental disability: considering adaptive and maladaptive behaviour. J Intellect Disabil Res. 2018;62(10):888–899.
- Anderson D, Dumont S, Jacobs P, et al. The personal costs of caring for a child with a disability: a review of the literature. Public Health Rep. 2007;122(1):3–16.
- Burton P, Chen K, Lethbridge L, et al. Child health and parental paid work. Rev Econ Household. 2017;15(2):597–620.
- Burton P, Phipps S. Economic costs of caring for children with disabilities in Canada. Can Public Policy. 2009;35(3):269–290.
- Lu Z-H, Zuo A. Effects of a child’s disability on affected female’s labour supply in Australia. Aust Econ Pap. 2010;49(3):222–240.
- Stabile M, Allin S. The economic costs of childhood disability. Future Child. 2012;22(1):65–96.
- Wehby GL, Ohsfeldt RL. The impact of having a young child with disabilities on maternal labor supply by race and marital status. J Health Hum Serv Adm. 2007;30:327–351.
- Tsiplova K, Ungar WJ, Flanagan HE, et al. Types of services and costs of programs for preschoolers with autism spectrum disorder across sectors: a comparison of two Canadian provinces. J Autism Dev Disord. 2019;49(6):2492–2508.
- Dudley C, Emery JC. The value of caregiver time: costs of support and care for individuals living with autism spectrum disorder. SPP Res Pap. 2014;7(1):1–48.
- Saunders BS, Tilford JM, Fussell JJ, et al. Financial and employment impact of intellectual disability on families of children with autism. Fam Syst Health. 2015;33(1):36–45.
- Horlin C, Falkmer M, Parsons R, et al. The cost of autism spectrum disorders. PloS One. 2014;9(9):e106552.
- Ganz ML. The lifetime distribution of the incremental societal costs of autism. Arch Pediatr Adolesc Med. 2007;161(4):343–349.
- Järbrink K, Fombonne E, Knapp M. Measuring the parental, service and cost impacts of children with autistic spectrum disorder: a pilot study. J Autism Dev Disord. 2003;33(4):395–402.
- Kröger H, Pakpahan E, Hoffmann R. What causes health inequality? a systematic review on the relative importance of social causation and health selection. Eur J Public Health. 2015;25(6):951–960.
- Elder GH, Jr Johnson MK, Crosnoe R. The emergence and development of life course theory. In: Mortimer J, Shanahan M, editors. Handbook of life course. Boston (MA): Springer; 2003. p. 3–19.
- Hodapp RM, Urbano RC. Using large-scale databases to examine families of children with intellectual and developmental disabilities. Int Rev Res Ment Retard. 2009;37:131–177.
- Genereaux D, van Karnebeek CD, Birch PH. Costs of caring for children with an intellectual developmental disorder. Disabil Health J. 2015;8(4):646–651.
- Leiter V, Krauss MW, Anderson B, et al. The consequences of caring: effects of mothering a child with special needs. J Fam Issues. 2004;25(3):379–403.
- Montes G, Halterman JS. Association of childhood autism spectrum disorders and loss of family income. Pediatrics. 2008;121(4):e821–e826.
- Sandoval DA, Rank MR, Hirschl TA. The increasing risk of poverty across the American life course. Demography. 2009;46(4):717–737.
- Mincer J. Schooling, Experience, and Earnings. Human Behavior & Social Institutions No. 2. 1974 [cited 2016 Dec 14]. Available from: http://eric.ed.gov/?id=ED103621.
- Statistics Canada. National Longitudinal Survey of Children: overview of survey instruments for 1994–1995, data collection 1. Ottawa (Canada): Statistics Canada. 1995.
- Statistics Canada. Microdata User Guide, National Longitudinal Survey of Children and Youth, Cycle 4, September 2000 to May 2001. Ottawa (Canada): Statistics Canada. Available from: http://www23.statcan.gc.ca/imdb-bmdi/document/4450_D4_T9_V4-eng.pdf
- Feeny D, Furlong W, Boyle M, et al. Multi-attribute health status classification systems. Health Utilities Index. Pharmacoeconomics. 1995;7(6):490–502.
- Feeny D, Furlong W, Torrance GW, et al. Multiattribute and single-attribute utility functions for the health utilities index mark 3 system. Med Care. 2002;40(2):113–128.
- Arim RG, Garner RE, Brehaut JC, et al. Contextual influences of parenting behaviors for children with neurodevelopmental disorders: results from a Canadian national survey. Disabil Rehabil. 2012;34(26):2222–2233.
- Raudenbush S, Bryk A. Hierarchical linear models: Application and data analysis methods. Thousand Oaks (CA): Sage Publications; 2002.
- Rust KF, Rao J. Variance estimation for complex surveys using replication techniques. Stat Methods Med Res. 1996;5(3):283–310.
- National Academies of Sciences, Engineering, and Medicine. A roadmap to reducing child poverty [Internet]. Washington (DC): National Academies of Sciences, Engineering, and Medicine; 2019.
- Shahtahmasebi S, Emerson E, Berridge D, et al. A longitudinal analysis of poverty among families supporting a child with a disability. J Intellect Dev Dis. 2010;9(1):65–75.
- Gibson-Davis C. Single and cohabitating parents and poverty. In: Brady D, Burton L, editors. Oxford Handbook of the Social Science of Poverty. Oxford (UK): Oxford University Press; 2016.
- Lee D, Jackson M. The relationship between lifetime health trajectories and socioeconomic attainment in middle age. Soc Sci Res. 2015;54:96–112.
- Rothwell DW, Gariépy G, Elgar FJ, et al. Trajectories of poverty and economic hardship among American families supporting a child with a neurodisability. J Intellect Disabil Res. 2019;63(10):1273–1284.
- Findlay L, Beasley E, Park J, et al. Longitudinal child data: what can be gained by linking administrative data and cohort data? Int J Popul Data Sci. 2018;3:1–11.
- King S, Teplicky R, King G, et al. Family-centered service for children with cerebral palsy and their families: a review of the literature. Semin Pediatr Neurol Elsevier. 2004;11(1):78–86.
- Filipe AM, Bogossian A, Zulla R, et al. Developing a Canadian framework for social determinants of health and well-being among children with neurodisabilities and their families: an ecosocial perspective. Disabil Rehabil. 2020. DOI:https://doi.org/10.1080/09638288.2020.1754926