Top

Journal of Autism and Developmental Disorders

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

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.

vorige artikel Parent-Mediated Interventions for Infants under 24 Months at Risk for Autism Spectrum Disorder: A Systematic Review of Randomized Controlled Trials

volgende artikel Restricted Eating in Preschoolers with Autism: Mother Stressors and Solutions

American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders. In V. Arlington (Eds.) (5th ed.,) American Psychiatric Association.

Anderson, C., & Butt, C. (2018). Young adults on the autism spectrum: The struggle for appropriate services. Journal of Autism and Developmental Disorders, 48(11), 3912–3925. https://doi.org/10.1007/s10803-018-3673-zCrossRefPubMed

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

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

Bauman, M. L. (2010). Medical comorbidities in autism: Challenges to diagnosis and treatment. Neurotherapeutics, 7, 320–327.CrossRef

Benevides, T. W., Carretta, H. J., & Lane, S. J. (2016). Unmet need for therapy among children with autism spectrum disorder: Results from the 2005–2006 and 2009–2010 national survey of children with special health care needs. Maternal and Child Health Journal, 20(4), 878–888. https://doi.org/10.1007/s10995-015-1876-xCrossRefPubMed

Bruder, M., Kerins, G., Mazzarella, C., Sims, J., & Stein, N. (2012). Brief report : The medical care of adults with autism spectrum disorders: Identifying the needs. Journal of Autism and Developmental Disorders, 42, 2498–2504. https://doi.org/10.1007/s10803-012-1496-xCrossRefPubMed

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

Cheak-zamora, A. N. C., & Yang, X. (2013). Disparities in transition planning for youth with autism spectrum disorder. Pediatrics, 131(3), 447–454. https://doi.org/10.1542/peds.2012-1572CrossRefPubMed

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., & 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., 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

Chiri, G., & Erickson, M. (2012). Unmet need and problems accessing core health care services for children with autism spectrum disorder. Maternal and Child Health Journal, 16, 1081–1091. https://doi.org/10.1007/s10995-011-0833-6CrossRefPubMed

Clarke, V., & Braun, V. (2017). Thematic analysis. The Journal of Positive Psychology, 9760, 1–2. https://doi.org/10.1080/17439760.2016.1262613CrossRef

Cox, D. J. (2012). From interdisciplinary to integrated care of the child with autism: The essential role for a code of ethics. Journal of Autism and Developmental Disorders, 42, 2729–2738. https://doi.org/10.1007/s10803-012-1530-zCrossRefPubMed

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

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

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.

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.

Groom, M. J., Kochhar, P., Hamilton, A., Liddle, E. B., Simeou, M., & Hollis, C. (2017). Atypical processing of gaze cues and faces explains comorbidity between autism spectrum disorder (ASD) and attention deficit/hyperactivity disorder (ADHD). Journal of Autism and Developmental Disorders, 47(5), 1496–1509. https://doi.org/10.1007/s10803-017-3078-4CrossRefPubMedPubMedCentral

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

Hill, T. L., Gray, S. A. O., Kamps, J. L., & Varela, R. E. (2015). Age and adaptive functioning in children and adolescents with ASD: The effects of intellectual functioning and ASD symptom severity. Journal of Autism and Developmental Disorders, 45(12), 4074–4083. https://doi.org/10.1007/s10803-015-2522-6CrossRefPubMedPubMedCentral

Kalb, L. G., Stuart, E. A., Mandell, D. S., Olfson, M., & Vasa, R. A. (2017). Management of mental health crises among youths with and without ASD: A national survey of child psychiatrists. Psychiatric Services, 68(10), 1039–1045. https://doi.org/10.1176/appi.ps.201600332CrossRefPubMed

Kaufman, M., & Pinzon, J. (2007). Transition to adult care for youth with special health care needs. Canadian Paediatric Society, 12(9), 785–788. https://www.cps.ca/en/documents/position/transition-youth-special-needs. Accessed Jan 2020.

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

Kuhlthau, K. A., Delahaye, J., & Erickson-warfi, M. (2016). Health care transition services for youth with autism spectrum disorders: Perspectives of caregivers. Pediatrics, 137(2), S158. https://doi.org/10.1542/peds.2015-2851NCrossRefPubMed

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

Liptak, G. S., Stuart, Æ. T., & Auinger, Æ. P. (2006). Health care utilization and expenditures for children with autism: Data from U.S. national samples. Journal of Autism and Developmental Disorders, 36, 871–879. https://doi.org/10.1007/s10803-006-0119-9CrossRefPubMed

Lord, C., Elsabbagh, M., Baird, G., & Veenstra-vanderweele, J. (2018). Autism spectrum disorder. The Lancet, 392(10146), 508–520. https://doi.org/10.1016/S0140-6736(18)31129-2CrossRef

Matthews, N. L., Smith, C. J., Kirwan, J., Malligo, A., Ober-Reynolds, S., & Kirwan, J. (2015). Adaptive functioning in autism spectrum disorder during the transition to adulthood. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-015-2400-2CrossRefPubMed

Milen, M. T., & Nicholas, D. B. (2017). Examining transitions from youth to adult services for young persons with autism. Social Work in Health Care, 56(7), 636–648. https://doi.org/10.1080/00981389.2017.1318800CrossRef

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

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

Nathenson, R. A., & Zablotsky, B. (2017). The transition to the adult health care system among youths with autism spectrum disorder. Brief Reports, 8, 735–738. https://doi.org/10.1176/appi.ps.201600239CrossRef

Nicolaidis, C., Raymaker, D., Mcdonald, K., Dern, S., Boisclair, W. C., Ashkenazy, E., & Baggs, A. (2012). Comparison of healthcare experiences in autistic and non-autistic adults: A cross-sectional online survey facilitated by an academic-community partnership. Journal of General Internal Medicine. https://doi.org/10.1007/s11606-012-2262-7CrossRefPubMedPubMedCentral

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

Oswald, D. P., Gilles, D. L., Cannady, M. S., Wenzel, D. B., Willis, J. H., & Bodurtha, J. N. (2013). Youth with special health care needs: Transition to adult health care services. Maternal and Child Health Journal, 17, 1744–1752. https://doi.org/10.1007/s10995-012-1192-7CrossRefPubMedPubMedCentral

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

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

Reiss, J. G., Gibson, R. W., & Walker, L. R. (2005). Health care transition: Youth, family, and provider perspectives. Pediatrics, 115(1), 112–120. https://doi.org/10.1542/peds.2004-1321CrossRefPubMed

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

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.

Santrock, J., Mackenzie-Rivers, A., & Pangman, V. (2017). Life-span development (6th ed.). McGraw-Hill Higher Education.

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.

Shahidullah, J. D., Azad, G., Mezher, K. R., Mcclain, M. B., & Mcintyre, L. L. (2018). Linking the medical and educational home to support children with autism spectrum disorder: Practice recommendations. Clinical Pediatrics. https://doi.org/10.1177/0009922818774344CrossRefPubMed

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

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

Stewart D., Freeman Matt., Law M., Healy H, Burke-Gaffney J., Forhan M., Young N., Guenther S. (2009). An evidence-based model and best practice guidelines for the transition to adulthood for youth with disabilities. https://canchild.ca/system/tenon/assets/attachments/000/000/688/original/BJAmodelandbestpracticeguidelinespdf2009.pdf. Accessed Jan 2020.

Thorne, S. (2000). Data analysis in qualitative research. Evidence Based Nursing, 3, 68–70.CrossRef

Vogan, V., Lake, J. K., Tint, A., Weiss, J. A., & Lunsky, Y. (2017). Tracking health care service use and the experiences of adults with autism spectrum disorder without intellectual disability: A longitudinal study of service rates, barriers and satisfaction. Disability and Health Journal, 10(2), 264–270. https://doi.org/10.1016/j.dhjo.2016.11.002CrossRefPubMed

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

Warwick-Giles, L., & Checkland, K. (2018). Integrated care: Using “sensemaking” to understand how organisations are working together to transform local health and social care services. Journal of Health Organization and Managment, 32(1), 85–100. https://doi.org/10.1108/JHOM-03-2017-0057CrossRef

Weinhold, I., & Gurtner, S. (2018). Rural–urban differences in determinants of patient satisfaction with primary care. Social Science & Medicine, 212, 76–85. https://doi.org/10.1016/j.socscimed.2018.06.019CrossRef

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

Young-Southward, G., Cooper, S., & Philo, C. (2017). Research in developmental disabilities health and wellbeing during transition to adulthood for young people with intellectual disabilities : A qualitative study. Research in Developmental Disabilities, 70, 94–103. https://doi.org/10.1016/j.ridd.2017.09.003CrossRefPubMed

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

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

Andere artikelen Uitgave 6/2022

Melatonin Treatment and Adequate Sleep Hygiene Interventions in Children with Autism Spectrum Disorder: A Randomized Controlled Trial

Alexithymic But Not Autistic Traits Impair Prosocial Behavior

Pretense Awareness Context and Autism: Insights from Conversation Analysis

Brief Report: Visuospatial and Spoken Language Recall in Autism: Preliminary Findings

Dietary Sugar Exposure and Oral Health Status in Children with Autism Spectrum Disorder: A Case-control Study

Early-Life Environmental and Child Factors Associated with the Presence of Disruptive Behaviors in Seven-Year-Old Children with Autistic Traits in the Avon Longitudinal Study of Parents and Children