Skip to main content
Top
Gepubliceerd in: Journal of Autism and Developmental Disorders 12/2015

29-07-2015 | Original Paper

“On the Sidelines”: Access to Autism-Related Services in the West Bank

Auteurs: Sarah Dababnah, Kathleen Bulson

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 12/2015

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

Abstract

We examined access to autism-related services among Palestinians (N = 24) raising children with autism spectrum disorder (ASD) in the West Bank. Using qualitative methods, we identified five primary interview themes. Poor screening, diagnostic, and psychoeducational practices were prevalent, as parents reported service providers minimized parental concerns and communicated ineffectively with the caregivers regarding treatment options. Geographic barriers and financial burdens prevented many families from seeking or maintaining services. Limited service availability was a dominant barrier: parents reported limited or denied access to education, community-based services, and ASD-specific interventions. Consequently, several families noted their children did not receive any services whatsoever. Research, practices and policies to address the shortage of services for children with ASD are urgently needed in the West Bank.
Literatuur
go back to reference Al Jabery, M., Arabiat, D., Al Khamra, H., Betawi, I., & Abdel Jabbar, S. (2014). Parental perceptions of services provided for children with autism in Jordan. Journal of Child and Family Studies, 23(3), 475–486. doi:10.1007/s10826-012-9703-0.CrossRef Al Jabery, M., Arabiat, D., Al Khamra, H., Betawi, I., & Abdel Jabbar, S. (2014). Parental perceptions of services provided for children with autism in Jordan. Journal of Child and Family Studies, 23(3), 475–486. doi:10.​1007/​s10826-012-9703-0.CrossRef
go back to reference Al-Farsi, Y., Al-Sharbati, M., Al-Farsi, O., Al-Shafaee, M., Brooks, D., & Waly, M. (2011). Brief report: Prevalence of autistic spectrum disorders in the Sultanate of Oman. Journal of Autism and Developmental Disorders, 41(6), 821–825. doi:10.1007/s10803-010-1094-8.CrossRefPubMed Al-Farsi, Y., Al-Sharbati, M., Al-Farsi, O., Al-Shafaee, M., Brooks, D., & Waly, M. (2011). Brief report: Prevalence of autistic spectrum disorders in the Sultanate of Oman. Journal of Autism and Developmental Disorders, 41(6), 821–825. doi:10.​1007/​s10803-010-1094-8.CrossRefPubMed
go back to reference Anastas, J. W. (2004). Quality in qualitative evaluation: Issues and possible answers. Research on Social Work Practice, 14(1), 57–65.CrossRef Anastas, J. W. (2004). Quality in qualitative evaluation: Issues and possible answers. Research on Social Work Practice, 14(1), 57–65.CrossRef
go back to reference Ansari, Z. A. (2002). Parental acceptance-rejection of disabled children in non-urban Pakistan. North American Journal of Psychology, 4(1), 121. Ansari, Z. A. (2002). Parental acceptance-rejection of disabled children in non-urban Pakistan. North American Journal of Psychology, 4(1), 121.
go back to reference Corbin, J. M., & Strauss, A. L. (2008). Basics of qualitative research: Techniques and procedures for developing grounded theory. Los Angeles: Sage. Corbin, J. M., & Strauss, A. L. (2008). Basics of qualitative research: Techniques and procedures for developing grounded theory. Los Angeles: Sage.
go back to reference Dukmak, S. (2009). Rehabilitation services in the United Arab Emirates as perceived by parents of children with disabilities. Journal of Rehabilitation, 75(4), 27–34. Dukmak, S. (2009). Rehabilitation services in the United Arab Emirates as perceived by parents of children with disabilities. Journal of Rehabilitation, 75(4), 27–34.
go back to reference Filipek, P. A., Accardo, P. J., Baranek, G. T., Cook, E. H. J., Dawson, G., Gordon, B., & Volkmar, F. R. (1999). The screening and diagnosis of autistic spectrum disorders. Journal of Autism and Developmental Disorders, 29(6), 439–484. doi:10.1023/A:1021943802493.CrossRefPubMed Filipek, P. A., Accardo, P. J., Baranek, G. T., Cook, E. H. J., Dawson, G., Gordon, B., & Volkmar, F. R. (1999). The screening and diagnosis of autistic spectrum disorders. Journal of Autism and Developmental Disorders, 29(6), 439–484. doi:10.​1023/​A:​1021943802493.CrossRefPubMed
go back to reference Giacaman, R., Khatib, R., Shabaneh, L., Ramlawi, A., Sabri, B., Sabatinelli, G., & Laurance, T. (2009). Health status and health services in the Occupied Palestinian Territory. The Lancet, 373, 837–849. doi:10.1016/S0140-6736(09)60107-0.CrossRef Giacaman, R., Khatib, R., Shabaneh, L., Ramlawi, A., Sabri, B., Sabatinelli, G., & Laurance, T. (2009). Health status and health services in the Occupied Palestinian Territory. The Lancet, 373, 837–849. doi:10.​1016/​S0140-6736(09)60107-0.CrossRef
go back to reference Gulliford, M., Figueroa-Munoz, J., Morgan, M., Hughes, D., Gibson, B., Beech, R., & Hudson, M. (2002). What does “access to health care” mean? Journal of Health Services Research and Policy, 7(3), 186–188.CrossRefPubMed Gulliford, M., Figueroa-Munoz, J., Morgan, M., Hughes, D., Gibson, B., Beech, R., & Hudson, M. (2002). What does “access to health care” mean? Journal of Health Services Research and Policy, 7(3), 186–188.CrossRefPubMed
go back to reference Habash, M., & Fteiha, M. (2015). Study of beliefs of parents of children with autism regarding complementary and traditional medicine in 4 Middle-East countries. Poster session at the International Meeting of Autism Research, Salt Lake City, UT. Habash, M., & Fteiha, M. (2015). Study of beliefs of parents of children with autism regarding complementary and traditional medicine in 4 Middle-East countries. Poster session at the International Meeting of Autism Research, Salt Lake City, UT.
go back to reference Hamdan, M., & Al-Akhras, N. (2009). House-to-house survey of disabilities in rural communities in the north of the West Bank. Eastern Mediterranean Health Journal, 15(6), 1496–1503.PubMed Hamdan, M., & Al-Akhras, N. (2009). House-to-house survey of disabilities in rural communities in the north of the West Bank. Eastern Mediterranean Health Journal, 15(6), 1496–1503.PubMed
go back to reference Hussein, H., Taha, G. R. A., & Almanasef, A. (2011). Characteristics of autism spectrum disorders in a sample of Egyptian and Saudi patients: Transcultural cross sectional study. Child and Adolescent Psychiatry and Mental Health, 5, 1–12. doi:10.1186/1753-2000-5-34.CrossRef Hussein, H., Taha, G. R. A., & Almanasef, A. (2011). Characteristics of autism spectrum disorders in a sample of Egyptian and Saudi patients: Transcultural cross sectional study. Child and Adolescent Psychiatry and Mental Health, 5, 1–12. doi:10.​1186/​1753-2000-5-34.CrossRef
go back to reference Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M., & van Dyck, P. C. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005–2006. Pediatrics, 122(6), e1149–e1158. doi:10.1542/peds.2008-1057.CrossRefPubMed Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M., & van Dyck, P. C. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005–2006. Pediatrics, 122(6), e1149–e1158. doi:10.​1542/​peds.​2008-1057.CrossRefPubMed
go back to reference Mandell, D. S., Ittenbach, R. F., Levy, S. E., & Pinto-Martin, J. A. (2007). Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(9), 1795–1802.PubMedCentralCrossRefPubMed Mandell, D. S., Ittenbach, R. F., Levy, S. E., & Pinto-Martin, J. A. (2007). Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(9), 1795–1802.PubMedCentralCrossRefPubMed
go back to reference McIntyre, D. I., Thiede, M., & Birch, S. (2009). Access as a policy-relevant concept in low- and middle-income countries. Health Economics, Policy and Law, 4(2), 179.CrossRef McIntyre, D. I., Thiede, M., & Birch, S. (2009). Access as a policy-relevant concept in low- and middle-income countries. Health Economics, Policy and Law, 4(2), 179.CrossRef
go back to reference Murphy, M. A., & Ruble, L. A. (2012). A comparative study of rurality and urbanicity on access to and satisfaction with services for children with autism spectrum disorders. Rural Special Education Quarterly, 31(3), 3–11. Murphy, M. A., & Ruble, L. A. (2012). A comparative study of rurality and urbanicity on access to and satisfaction with services for children with autism spectrum disorders. Rural Special Education Quarterly, 31(3), 3–11.
go back to reference Obeid, R., & Daou, N. (2015). The effects of coping style, social support, and behavioral problems on the well-being of mothers of children with autism spectrum disorders in Lebanon. Research in Autism Spectrum Disorders, 10, 59–70. doi:10.1016/j.rasd.2014.11.003.CrossRef Obeid, R., & Daou, N. (2015). The effects of coping style, social support, and behavioral problems on the well-being of mothers of children with autism spectrum disorders in Lebanon. Research in Autism Spectrum Disorders, 10, 59–70. doi:10.​1016/​j.​rasd.​2014.​11.​003.CrossRef
go back to reference Palestinian Central Bureau of Statistics. (2011). Disability survey, 2011. Ramallah: Palestinian Ministry of Social Affairs. Palestinian Central Bureau of Statistics. (2011). Disability survey, 2011. Ramallah: Palestinian Ministry of Social Affairs.
go back to reference QSR International. (2012). NVivo (10th edn.) QSR International. QSR International. (2012). NVivo (10th edn.) QSR International.
go back to reference Seif Eldin, A., Habib, D., Noufal, A., Farrag, S., Bazaid, K., Al-Sharbati, M., & Gaddour, N. (2008). Use of M-CHAT for a multinational screening of young children with autism in the Arab countries. International Review of Psychiatry, 20(3), 281–289. doi:10.1080/09540260801990324.CrossRefPubMed Seif Eldin, A., Habib, D., Noufal, A., Farrag, S., Bazaid, K., Al-Sharbati, M., & Gaddour, N. (2008). Use of M-CHAT for a multinational screening of young children with autism in the Arab countries. International Review of Psychiatry, 20(3), 281–289. doi:10.​1080/​0954026080199032​4.CrossRefPubMed
go back to reference State of Palestine Ministry of Health. (2012). Public health policy for Palestinian children. Nablus: State of Palestine Ministry of Health. State of Palestine Ministry of Health. (2012). Public health policy for Palestinian children. Nablus: State of Palestine Ministry of Health.
go back to reference State of Palestine Ministry of Health. (2014). National health strategy 2014–2016. Nablus: State of Palestine Ministry of Health. State of Palestine Ministry of Health. (2014). National health strategy 2014–2016. Nablus: State of Palestine Ministry of Health.
go back to reference Taha, G. R. A., & Hussein, H. (2014). Autism spectrum disorders in developing countries: Lessons from the Arab world. In V. B. Patel, V. R. Preedy, & C. R. Martin (Eds.), Comprehensive guide to autism (pp. 2509–2531). New York: Springer. doi:10.1007/978-1-4614-4788-7_98.CrossRef Taha, G. R. A., & Hussein, H. (2014). Autism spectrum disorders in developing countries: Lessons from the Arab world. In V. B. Patel, V. R. Preedy, & C. R. Martin (Eds.), Comprehensive guide to autism (pp. 2509–2531). New York: Springer. doi:10.​1007/​978-1-4614-4788-7_​98.CrossRef
go back to reference Thomas, K. C., Ellis, A. R., McLaurin, C., Daniels, J., & Morrissey, J. P. (2007). Access to care for autism-related services. Journal of Autism and Developmental Disorders, 37(10), 1902–1912.CrossRefPubMed Thomas, K. C., Ellis, A. R., McLaurin, C., Daniels, J., & Morrissey, J. P. (2007). Access to care for autism-related services. Journal of Autism and Developmental Disorders, 37(10), 1902–1912.CrossRefPubMed
go back to reference United Nations. (2012). The humanitarian impact of Israeli settlement policies. East Jerusalem: United Nations Office for the Coordination of Humanitarian Affairs. United Nations. (2012). The humanitarian impact of Israeli settlement policies. East Jerusalem: United Nations Office for the Coordination of Humanitarian Affairs.
go back to reference Vohra, R., Madhavan, S., Sambamoorthi, U., & St Peter, C. (2014). Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions. Autism: The International Journal of Research and Practice, 18(7), 815–826. doi:10.1177/1362361313512902.CrossRef Vohra, R., Madhavan, S., Sambamoorthi, U., & St Peter, C. (2014). Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions. Autism: The International Journal of Research and Practice, 18(7), 815–826. doi:10.​1177/​1362361313512902​.CrossRef
go back to reference World Bank. (2013). West Bank and Gaza: Area C and the future of the Palestinian economy (No. AUS2922). Washington, DC: World Bank. World Bank. (2013). West Bank and Gaza: Area C and the future of the Palestinian economy (No. AUS2922). Washington, DC: World Bank.
go back to reference World Health Organization. (2013). Right to health: Barriers to health access in the occupied Palestinian territory, 2011 and 2012 (No. WHO-EM/OPT/004/E). Geneva: World Health Organization. World Health Organization. (2013). Right to health: Barriers to health access in the occupied Palestinian territory, 2011 and 2012 (No. WHO-EM/OPT/004/E). Geneva: World Health Organization.
go back to reference Young, W. C. (1997). Families and the handicapped in northern Jordan. Journal of Comparative Family Studies, 28(2), 151–169. Young, W. C. (1997). Families and the handicapped in northern Jordan. Journal of Comparative Family Studies, 28(2), 151–169.
go back to reference Zeglam, A. M., & Maound, A. J. (2012). Prevalence of autistic spectrum disorders in Tripoli, Libya: The need for more research and planned services. Eastern Mediterranean Health Journal, 18(2), 184–188.PubMed Zeglam, A. M., & Maound, A. J. (2012). Prevalence of autistic spectrum disorders in Tripoli, Libya: The need for more research and planned services. Eastern Mediterranean Health Journal, 18(2), 184–188.PubMed
Metagegevens
Titel
“On the Sidelines”: Access to Autism-Related Services in the West Bank
Auteurs
Sarah Dababnah
Kathleen Bulson
Publicatiedatum
29-07-2015
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 12/2015
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-015-2538-y

Andere artikelen Uitgave 12/2015

Journal of Autism and Developmental Disorders 12/2015 Naar de uitgave