Skip to main content
Top
Gepubliceerd in:

03-07-2021 | Original Paper

Healthcare Services During the Transitions to Adulthood Among Individuals with ASD Aged 15–25 Years Old: Stakeholders’ Perspectives

Auteurs: Parisa Ghanouni, Liam Seaker

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 6/2022

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

Although previous research has shown that the transition to adulthood may be challenging, there exists a lack of research regarding perspectives of stakeholders on the transition of individuals with Autism Spectrum Disorder (ASD). This study aimed to investigate stakeholders’ experiences regarding healthcare services for youth with ASD during their transition. We involved 20 stakeholders, including 17 parents of youth with ASD as well as 3 services providers. The study yielded three major themes including: (a) accessibility and quality of care; (b) tensions and conflicts; and (c) navigation and integrated care. The findings can be used to direct change within the healthcare services towards better practices for youth with ASD and increasing the likelihood of positive health outcomes.
Literatuur
go back to reference American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders. In V. Arlington (Eds.) (5th ed.,) American Psychiatric Association. American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders. In V. Arlington (Eds.) (5th ed.,) American Psychiatric Association.
go back to reference Anderson, K. A., Sosnowy, C., Kuo, A. A., & Shattuck, P. T. (2018). Transition of individuals with autism to adulthood: A review of qualitative studies. Pediatrics, 141(4), S318.CrossRef Anderson, K. A., Sosnowy, C., Kuo, A. A., & Shattuck, P. T. (2018). Transition of individuals with autism to adulthood: A review of qualitative studies. Pediatrics, 141(4), S318.CrossRef
go back to reference Atun-Einy, O., & Ben-Sasson, A. (2018). Pediatric allied healthcare professionals’ knowledge and self-efficacy regarding ASD. Research in Autism Spectrum Disorder, 47, 1–13.CrossRef Atun-Einy, O., & Ben-Sasson, A. (2018). Pediatric allied healthcare professionals’ knowledge and self-efficacy regarding ASD. Research in Autism Spectrum Disorder, 47, 1–13.CrossRef
go back to reference Bauman, M. L. (2010). Medical comorbidities in autism: Challenges to diagnosis and treatment. Neurotherapeutics, 7, 320–327.CrossRef Bauman, M. L. (2010). Medical comorbidities in autism: Challenges to diagnosis and treatment. Neurotherapeutics, 7, 320–327.CrossRef
go back to reference Cadman, T., Eklund, H., Howley, D., Hayward, H., Clarke, H., Findon, J., Xenitidis, K., Murphy, D., Asherson, P., & Glaser, K. (2012). Caregiver burden as people with autism spectrum disorder and attention-deficit/hyperactivity disorder transition into adolescence and adulthood in the United Kingdom. Journal of the American Academy of Child and Adolescent Psychiatry, 51(9), 879–888. https://doi.org/10.1016/j.jaac.2012.06.017CrossRefPubMed Cadman, T., Eklund, H., Howley, D., Hayward, H., Clarke, H., Findon, J., Xenitidis, K., Murphy, D., Asherson, P., & Glaser, K. (2012). Caregiver burden as people with autism spectrum disorder and attention-deficit/hyperactivity disorder transition into adolescence and adulthood in the United Kingdom. Journal of the American Academy of Child and Adolescent Psychiatry, 51(9), 879–888. https://​doi.​org/​10.​1016/​j.​jaac.​2012.​06.​017CrossRefPubMed
go back to reference Cheak-Zamora, N. C., & Teti, M. (2015). “You think it’s hard now … It gets much harder for our children”—Youth with autism and their caregiver’s perspectives of health care transition services.pdf. Autism, 19(8), 992–1001.CrossRef Cheak-Zamora, N. C., & Teti, M. (2015). “You think it’s hard now … It gets much harder for our children”—Youth with autism and their caregiver’s perspectives of health care transition services.pdf. Autism, 19(8), 992–1001.CrossRef
go back to reference Cheak-Zamora, N. C., Teti, M., & First, J. (2015). Transitions are scary for our kids, and they’re scary for us’ family member and youth perspectives on the challenges of transitioning to adulthood with autism.pdf. Journal of Applied Research in Intellectual Disabilitites, 28, 548–560.CrossRef Cheak-Zamora, N. C., Teti, M., & First, J. (2015). Transitions are scary for our kids, and they’re scary for us’ family member and youth perspectives on the challenges of transitioning to adulthood with autism.pdf. Journal of Applied Research in Intellectual Disabilitites, 28, 548–560.CrossRef
go back to reference Cheak-Zamora, N. C., Teti, M., Maurer-batjer, A., & Koegler, E. (2017). Exploration and comparison of adolescents with autism spectrum disorder and their caregiver’s perspectives on transitioning to adult health care and adulthood. Journal of Pediatric Psychology, 42(9), 1028–1039. https://doi.org/10.1093/jpepsy/jsx075CrossRefPubMed Cheak-Zamora, N. C., Teti, M., Maurer-batjer, A., & Koegler, E. (2017). Exploration and comparison of adolescents with autism spectrum disorder and their caregiver’s perspectives on transitioning to adult health care and adulthood. Journal of Pediatric Psychology, 42(9), 1028–1039. https://​doi.​org/​10.​1093/​jpepsy/​jsx075CrossRefPubMed
go back to reference Crossman, M. K., Lindly, O. J., Chan, J., Eaves, M., Kuhlthau, K. A., Parker, R. A., Coury, D. L., Zand, D. H., Nowinski, L. A., Smith, K., Tomkinson, M., & Murray, D. S. (2020). Families’ experiences with family navigation services in the autism treatment network. Pediatrics, 145, 60–71.CrossRef Crossman, M. K., Lindly, O. J., Chan, J., Eaves, M., Kuhlthau, K. A., Parker, R. A., Coury, D. L., Zand, D. H., Nowinski, L. A., Smith, K., Tomkinson, M., & Murray, D. S. (2020). Families’ experiences with family navigation services in the autism treatment network. Pediatrics, 145, 60–71.CrossRef
go back to reference Dressler, P., Nguyen, T., Moody, E., Sandra, F., & Pickler, L. (2018). Use of transition resources by primary care providers for youth with intellectual and developmental disabilities. pdf. Intellectual and Developmental Disabilities, 56(1), 56–68.CrossRef Dressler, P., Nguyen, T., Moody, E., Sandra, F., & Pickler, L. (2018). Use of transition resources by primary care providers for youth with intellectual and developmental disabilities. pdf. Intellectual and Developmental Disabilities, 56(1), 56–68.CrossRef
go back to reference Dudley, C., & Emery, J. C. H. (2016). The value of caregiver time: Cost of support and care for individuals living with austim. University of Calgary, 8(3), 1–4. Dudley, C., & Emery, J. C. H. (2016). The value of caregiver time: Cost of support and care for individuals living with austim. University of Calgary, 8(3), 1–4.
go back to reference Friedman, N. D. B., Erickson, M., & Parish, S. L. (2013). Transition to adulthood for individuals with autism spectrum disorder : Current issues and future perspectives. Future Medicine, 3, 181–192. Friedman, N. D. B., Erickson, M., & Parish, S. L. (2013). Transition to adulthood for individuals with autism spectrum disorder : Current issues and future perspectives. Future Medicine, 3, 181–192.
go back to reference Hall, T., Kriz, D., Duvall, S., Nguyen-Driver, M., & Duffield, T. (2015). Healthcare transition challenges faced by young adults with autism spectrum disorder. Clinical Pharmacology & Therapeutics, 98(6), 573–575.CrossRef Hall, T., Kriz, D., Duvall, S., Nguyen-Driver, M., & Duffield, T. (2015). Healthcare transition challenges faced by young adults with autism spectrum disorder. Clinical Pharmacology & Therapeutics, 98(6), 573–575.CrossRef
go back to reference King, C., Merrick, H., & LeCouteur, A. (2020). How should we support young people with ASD and mental health problems as they navigate the transition to adult life including access to adult healthcare services. Epidemiology and Psychiatric Sciences, 29, 1–5.CrossRef King, C., Merrick, H., & LeCouteur, A. (2020). How should we support young people with ASD and mental health problems as they navigate the transition to adult life including access to adult healthcare services. Epidemiology and Psychiatric Sciences, 29, 1–5.CrossRef
go back to reference Lai, J. K. Y., & Weiss, J. A. (2017). Priority service needs and receipt across the lifespan for individuals with autism spectrum disorder. Autism Research, 10, 1436–1447.CrossRef Lai, J. K. Y., & Weiss, J. A. (2017). Priority service needs and receipt across the lifespan for individuals with autism spectrum disorder. Autism Research, 10, 1436–1447.CrossRef
go back to reference Montenegro, H., Holder, R., Ramagem, C., Urrutia, S., Fabrega, R., Tasca, R., Alfaro, G., Salgado, O., & Gomes, M. A. (2011). Combating health care fragmentation through integrated health service delivery networks in the Americas : Lessons learned. Journal of Integrated Care, 19(5), 5–16. https://doi.org/10.1108/14769011111176707CrossRef Montenegro, H., Holder, R., Ramagem, C., Urrutia, S., Fabrega, R., Tasca, R., Alfaro, G., Salgado, O., & Gomes, M. A. (2011). Combating health care fragmentation through integrated health service delivery networks in the Americas : Lessons learned. Journal of Integrated Care, 19(5), 5–16. https://​doi.​org/​10.​1108/​1476901111117670​7CrossRef
go back to reference Muskens, J. B., Velders, F. P., & Staal, W. G. (2017). Medical comorbidities in children and adolescents with autism spectrum disorders and attention deficit hyperactivity disorders: A systematic review. European Child & Adolescent Psychiatry, 26, 1093–1103.CrossRef Muskens, J. B., Velders, F. P., & Staal, W. G. (2017). Medical comorbidities in children and adolescents with autism spectrum disorders and attention deficit hyperactivity disorders: A systematic review. European Child & Adolescent Psychiatry, 26, 1093–1103.CrossRef
go back to reference Nicolaidis, C., Raymaker, D. M., McDonald, K. E., Baggs, W. A. E. V., Dern, S., Kapp, S. K., Weiner, M., Boisclair, C., & Ashkenazy, E. (2015). “Respect the way I need to communicate with you”—Healthcare experiences of adults on the autism spectrum. pdf. Autism, 9(7), 824–831.CrossRef Nicolaidis, C., Raymaker, D. M., McDonald, K. E., Baggs, W. A. E. V., Dern, S., Kapp, S. K., Weiner, M., Boisclair, C., & Ashkenazy, E. (2015). “Respect the way I need to communicate with you”—Healthcare experiences of adults on the autism spectrum. pdf. Autism, 9(7), 824–831.CrossRef
go back to reference Parker, M., Diamond, R., & Del Guercio, A. (2019). Care coordination of autism spectrum disorder—A solution-focused approach. pdf. Issues in Mental Health Nursing, 41(2), 138–145.CrossRef Parker, M., Diamond, R., & Del Guercio, A. (2019). Care coordination of autism spectrum disorder—A solution-focused approach. pdf. Issues in Mental Health Nursing, 41(2), 138–145.CrossRef
go back to reference Rattaz, C., Ledesert, B., Masson, O., Ouss, L., Ropers, G., & Baghdadli, A. (2012). Special education and care services for children, adolescents, and adults with autism spectrum disorders in France—Families’ opinion and satisfaction. pdf. Autism, 18(2), 185–193.CrossRef Rattaz, C., Ledesert, B., Masson, O., Ouss, L., Ropers, G., & Baghdadli, A. (2012). Special education and care services for children, adolescents, and adults with autism spectrum disorders in France—Families’ opinion and satisfaction. pdf. Autism, 18(2), 185–193.CrossRef
go back to reference Resch, A., Mireles, G., Benz, M., Grenwelge, C., Peterson, R., & Zhang, D. (2010). Giving parents a voice—A qualitative study of the challenges experienced by parents of children with disabilities copy. pdf. Rehabilitation Psychology, 55(2), 139–150.CrossRef Resch, A., Mireles, G., Benz, M., Grenwelge, C., Peterson, R., & Zhang, D. (2010). Giving parents a voice—A qualitative study of the challenges experienced by parents of children with disabilities copy. pdf. Rehabilitation Psychology, 55(2), 139–150.CrossRef
go back to reference Rygh, E. M., & Hjortdahl, P. (2007). Continuous and integrated health care services in rural areas. A literature study. Rural and Remote Health, 7, 1–10. Rygh, E. M., & Hjortdahl, P. (2007). Continuous and integrated health care services in rural areas. A literature study. Rural and Remote Health, 7, 1–10.
go back to reference Santrock, J., Mackenzie-Rivers, A., & Pangman, V. (2017). Life-span development (6th ed.). McGraw-Hill Higher Education. Santrock, J., Mackenzie-Rivers, A., & Pangman, V. (2017). Life-span development (6th ed.). McGraw-Hill Higher Education.
go back to reference Sarkar, T. (2015). Intellectual and developmental disability: Transition to adulthood and decision making process. International Journal of Child Health and Human Development, 8(4), 517–527. Sarkar, T. (2015). Intellectual and developmental disability: Transition to adulthood and decision making process. International Journal of Child Health and Human Development, 8(4), 517–527.
go back to reference Smith-Young, J., Chafe, R., & Rick, A. (2020). “Managing the wait”—Parents’ experiences in accessing diagnostic and treatment services for children and adolescents diagnosed with autism spectrum disorder. pdf. Health Services Insight, 13, 1–10.CrossRef Smith-Young, J., Chafe, R., & Rick, A. (2020). “Managing the wait”—Parents’ experiences in accessing diagnostic and treatment services for children and adolescents diagnosed with autism spectrum disorder. pdf. Health Services Insight, 13, 1–10.CrossRef
go back to reference Stadnick, N. A., Brookman-frazee, L., Mandell, D. S., Kuelbs, C. L., Coleman, K. J., Sahms, T., & Aarons, G. A. (2019). A mixed methods study to adapt and implement integrated mental healthcare for children with autism spectrum disorder. Pilot and Feasibility Studies, 5, 1–10.CrossRef Stadnick, N. A., Brookman-frazee, L., Mandell, D. S., Kuelbs, C. L., Coleman, K. J., Sahms, T., & Aarons, G. A. (2019). A mixed methods study to adapt and implement integrated mental healthcare for children with autism spectrum disorder. Pilot and Feasibility Studies, 5, 1–10.CrossRef
go back to reference Thorne, S. (2000). Data analysis in qualitative research. Evidence Based Nursing, 3, 68–70.CrossRef Thorne, S. (2000). Data analysis in qualitative research. Evidence Based Nursing, 3, 68–70.CrossRef
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. pdf. Autism, 18(7), 815–826.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. pdf. Autism, 18(7), 815–826.CrossRef
go back to reference Weiss, J. A., Whelan, M., McMorris, C., Carroll, C., & Alliance, C. A. S. D. (2014). Autism in Canada: National needs assessment survey for families, individuals with autism spectrum disorder and professionals. Sl: Canadian autism Spectrum disorders Alliance Weiss, J. A., Whelan, M., McMorris, C., Carroll, C., & Alliance, C. A. S. D. (2014). Autism in Canada: National needs assessment survey for families, individuals with autism spectrum disorder and professionals. Sl: Canadian autism Spectrum disorders Alliance
Metagegevens
Titel
Healthcare Services During the Transitions to Adulthood Among Individuals with ASD Aged 15–25 Years Old: Stakeholders’ Perspectives
Auteurs
Parisa Ghanouni
Liam Seaker
Publicatiedatum
03-07-2021
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 6/2022
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-021-05159-6

Andere artikelen Uitgave 6/2022

Journal of Autism and Developmental Disorders 6/2022 Naar de uitgave