Top

Journal of Autism and Developmental Disorders

Gepubliceerd in:

02-01-2021 | Original Paper

Children with Autism Spectrum Disorders in Low-Resource Settings: Reported Experiences and Needs of Parents in Mongolia

Auteurs: James D. Lee, Hedda Meadan

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 10/2021

Abstract

Although it is well-documented that families of children with autism in developed nations report hardships, few researchers have focused on families who live in less-developed, low-resource settings. Using five focus groups with 30 parents of children with autism in Mongolia, a low- resource setting, the purpose of this study was to provide detailed accounts of their experiences, challenges, and needs. Participants reported severe challenges related to raising their children with autism in their country. Parents shared barriers related to the limited availability of services and support, exacerbated financial burdens, and a lack of enforcement of relevant laws. Parents also shared their perceived needs including more services for their children, more sustainable training and coaching programs for parents, and parents’ collective advocacy.

vorige artikel Alterations in Rapid Social Evaluations in Individuals with High Autism Traits

volgende artikel Naïve Theories of Biology, Physics, and Psychology in Children with ASD

Alleen toegankelijk voor geautoriseerde gebruikers

An, S., Chan, C. K., & Kaukenova, B. (2020). Families in transition: Parental perspectives of support and services for children with autism in Kazakhstan. International Journal of Disability, Development and Education, 67(1), 28–44.CrossRef

Asian Development Bank. (2019). Mongolia. https://www.adb.org/countries/mongolia/main

Brantlinger, E., Jimenez, R., Klingner, J., Pugach, M., & Richardson, V. (2005). Qualitative studies in special education. Exceptional Children, 71(2), 195–207.CrossRef

Bronfenbrenner, U. (1979). The ecology of human development. Harvard: Harvard University Press.

Burke, M. M., & Sandman, L. (2017). The effectiveness of a parent legislative advocacy program. Journal of Policy and Practice in Intellectual Disabilities, 14(2), 138–145.CrossRef

Centers for Disease Control and Prevention. (2020). Prevalence of Autism Spectrum Disorder among children aged 8 years —Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016. Morbidity and Mortality Weekly Report, 69, 1–12. https://doi.org/10.15585/mmwr.ss6904a1.CrossRef

Chataika, T., Mckenzie, J. A., Swart, E., & Lyner-Cleophas, M. (2012). Access to education in Africa: Responding to the United Nations convention on the rights of persons with disabilities. Disability & Society, 27(3), 385–398.CrossRef

de Leeuw, A., Happé, F., & Hoekstra, R. A. (2020). A conceptual framework for understanding the cultural and contextual factors on autism across the globe. Autism Research. https://doi.org/10.1002/aur.2276.CrossRefPubMed

Desai, M. U., Divan, G., Wertz, F. J., & Patel, V. (2012). The discovery of autism: Indian parents’ experiences of caring for their child with an autism spectrum disorder. Transcultural Psychiatry, 49(3–4), 613–637.CrossRef

Disabled People’s Organizations of Mongolia [DPOM]. (2015). Implementation of the UN Convention on the Rights of Persons with Disabilities in Mongolia. www.disabilitycouncilinternational.org/INT_CRPD_ICO_MNG_19556_E

Divan, G., Hamdani, S. U., Vajartkar, V., Minhas, A., Taylor, C., Aldred, C., et al. (2015). Adapting an evidence-based intervention for autism spectrum disorder for scaling up in resource-constrained settings: The development of the PASS intervention in South Asia. Global Health Action, 8(1), 272–278.CrossRef

Divan, G., Vajaratkar, V., Desai, M. U., Strik-Lievers, L., & Patel, V. (2012). Challenges, coping strategies, and unmet needs of families with a child with autism spectrum disorder in Goa, India. Autism Research, 5(3), 190–200.CrossRef

Elsabbagh, M., Divan, G., Koh, Y. J., Kim, Y. S., Kauchali, S., Marcín, C., et al. (2012). Global prevalence of autism and other pervasive developmental disorders. Autism Research, 5(3), 160–179.CrossRef

Goedeke, S., Shepherd, D., Landon, J., & Taylor, S. (2019). How perceived support relates to child autism symptoms and care-related stress in parents caring for a child with autism. Research in Autism Spectrum Disorders, 60, 36–47.CrossRef

Gona, J. K., Newton, C. R., Rimba, K. K., Mapenzi, R., Kihara, M., Vijver, F. V., & Abubakar, A. (2016). Challenges and coping strategies of parents of children with autism on the Kenyan coast. Rural and Remote Health, 16(2), 3517.PubMedPubMedCentral

Guler, J., de Vries, P. J., Seris, N., Shabalala, N., & Franz, L. (2018). The importance of context in early autism intervention: A qualitative South African study. Autism, 22(8), 1005–1017.CrossRef

Hastings, R. P., Kovshoff, H., Ward, N. J., Degli Espinosa, F., Brown, T., & Remington, B. (2005). Systems analysis of stress and positive perceptions in mothers and fathers of pre-school children with autism. Journal of Autism and Developmental Disorders, 35(5), 635–644.CrossRef

Heys, M., Alexander, A., Medeiros, E., Tumbahangphe, K. M., Gibbons, F., Shrestha, R., et al. (2016). Understanding parents’ and professionals’ knowledge and awareness of autism in Nepal. Autism, 21(4), 436–449.CrossRef

Juneja, M., Mukherjee, S. B., Sharma, S., Jain, R., Das, B., & Sabu, P. (2012). Evaluation of a parent-based behavioral intervention program for children with autism in a low-resource setting. Journal of Pediatric Neurosciences, 7(1), 16–18.CrossRef

Koffer Miller, K. H., Mathew, M., Nonnemacher, S. L., & Shea, L. L. (2018). Program experiences of adults with autism, their families, and providers: Findings from a focus group study. Autism, 22(3), 345–356. https://doi.org/10.1177/1362361316679000.CrossRefPubMed

Lavelle, T. A., Weinstein, M. C., Newhouse, J. P., Munir, K., Kuhlthau, K. A., & Prosser, L. A. (2014). Economic burden of childhood autism spectrum disorders. Pediatrics, 133(3), 520–529.CrossRef

Lee, J. D., & Meadan, H. (2020). Parent-mediated interventions for children with ASD in low-resource settings: A scoping review. Review Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s40489-020-00218-7.CrossRef

Llewellyn, G., Emerson, E., Madden, R., & Honey, A. (2012). The well-being of children with disabilities in the Asia-Pacific region: Analysis of UNICEF MICS 3 survey data from Bangladesh, Lao PDR, Mongolia and Thailand. The University of Sydney, Centre for Disability Research and Policy. https://ses.library.usyd.edu.au/bitstream/handle/2123/13548/asia-pacific-mics-2012.pdf?sequence=1

Meadan, H., Halle, J. W., & Ebata, A. T. (2010). Families with children who have autism spectrum disorders: Stress and support. Exceptional Children, 77(1), 7–36.CrossRef

Mongolia National Federation of the Blind (MNFB). (2014). Implementation of the UN Convention on the Rights of People with Disabilities in Mongolia. http://www.disabilitycouncilinternational.org/INT_CRPD_ICO_MNG_18158_E

Nyumba, T., Wilson, K., Derrick, C. J., & Mukherjee, N. (2018). The use of focus group discussion methodology: Insights from two decades of application in conservation. Methods in Ecology and Evolution, 9(1), 20–32.CrossRef

Ooi, K. L., Ong, Y. S., Jacob, S. A., & Khan, T. M. (2016). A meta-synthesis on parenting a child with autism. Neuropsychiatric Disease and Treatment, 12, 745–762.PubMedPubMedCentral

Patton, M. Q. (2014). Qualitative research and evaluation methods: Integrating theory and practice. Los Angeles: Sage Publications.

Raulston, T. J., Hieneman, M., Caraway, N., Pennefather, J., & Bhana, N. (2019). Enablers of behavioral parent training for families of children with autism spectrum disorder. Journal of Child and Family Studies, 28(3), 693–703. https://doi.org/10.1007/s10826-018-1295-x.CrossRef

Reichow, B., Servili, C., Yasamy, M. T., Barbui, C., & Saxena, S. (2013). Non-specialist psychosocial interventions for children and adolescents with intellectual disability or lower-functioning autism spectrum disorders: A systematic review. Public Library of Science Medicine, 10(12), e1001572. https://doi.org/10.1371/journal.pmed.1001572.CrossRefPubMedPubMedCentral

Ruparelia, K., Abubakar, A., Badoe, E., Bakare, M., Visser, K., Chugani, D. C., et al. (2016). Autism Spectrum Disorders in Africa: Current challenges in identification, assessment, and treatment. Journal of Child Neurology, 31(8), 1018–1026. https://doi.org/10.1177/0883073816635748.CrossRefPubMedPubMedCentral

Samadi, S. A., & McConkey, R. (2011). Autism in developing countries: Lessons from Iran. Autism Research and Treatment, 2011, 1–11. https://doi.org/10.1155/2011/145359.CrossRef

Shogren, K. A., & Turnbull, H. R. (2014). Core concepts of disability policy, the convention on the rights of persons with disabilities, and public policy research with respect to developmental disabilities. Journal of Policy and Practice in Intellectual Disabilities, 11(1), 19–26.CrossRef

Stewart, L. A., & Lee, L. C. (2017). Screening for autism spectrum disorder in low-and middle-income countries: A systematic review. Autism, 21(5), 527–539.CrossRef

Strauss, A., & Corbin, J. (2015). Basics of qualitative research techniques. Los Angeles: Sage Publications.

Tekola, B., Baheretibeb, Y., Roth, I., Tilahun, D., Fekadu, A., Hanlon, C., & Hoekstra, R. A. (2016). Challenges and opportunities to improve autism services in low-income countries: Lessons from a situational analysis in Ethiopia. Global Mental Health, 3, 1–11. https://doi.org/10.1017/gmh.2016.17.CrossRef

Tilahun, D., Hanlon, C., Fekadu, A., Tekola, B., Baheretibeb, Y., & Hoekstra, R. A. (2016). Stigma, explanatory models and unmet needs of caregivers of children with developmental disorders in a low-income African country: A cross-sectional facility-based survey. BMC Health Services Research, 16, 1–12.CrossRef

Tomlinson, M., Yasamy, M. T., Emerson, E., Officer, A., Richler, D., & Saxena, S. (2014). Setting global research priorities for developmental disabilities, including intellectual disabilities and autism. Journal of Intellectual Disability Research, 58(12), 1121–1130.CrossRef

United Nations Education and Science Cultural Organisation (UNESCO). (1994). The Salamanca Statement and Framework for Action on Special Needs Education. http://www.unesco.org/education/pdf/SALAMA_E.PDF

Wibeck, V., Dahlgren, M. A., & Öberg, G. (2007). Learning in focus groups: An analytical dimension for enhancing focus group research. Qualitative Research, 7(2), 249–267. https://doi.org/10.1177/1468794107076023.CrossRef

World Health Organization. (2012). Developmental difficulties in early childhood: Prevention, early identification, assessment and intervention in low- and middle-income countries, a review. https://www.who.int/maternal_child_adolescent/documents/9789241503549.pdf

World Health Organization. (2013). Meeting report: Autism Spectrum Disorders and other developmental disorders: From raising awareness to building capacity. World Health Organization, Geneva, Switzerland. September 2013.

World Health Organization. (2018). Training parents to transform children’s lives. https://www.who.int/mental_health/maternal-child/PST/en/

Titel: Children with Autism Spectrum Disorders in Low-Resource Settings: Reported Experiences and Needs of Parents in Mongolia
Auteurs: James D. Lee
Hedda Meadan
Publicatiedatum: 02-01-2021
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 10/2021
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-020-04818-4

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

Andere artikelen Uitgave 10/2021

A Study of the Families Included in Receiving Better Special Education Services (FIRME) Project for Latinx Families of Children with Autism and Developmental Disabilities

Testing the Latent Structure of the Autism Spectrum Quotient in a Sub-clinical Sample of University Students Using Factor Mixture Modelling

Randomized Controlled Trial of a Video Gaming-Based Social Skills Program for Children on the Autism Spectrum

Electroconvulsive Therapy for Catatonia with mTOR Mutation

Enhancing Social Initiations Using Naturalistic Behavioral Intervention: Outcomes from a Randomized Controlled Trial for Children with Autism

Autism Spectrum Disorder Alertness in Dutch Youth and Family Center Physicians: Effects of a Live Online Educational Program