Skip to main content
Top
Gepubliceerd in: Journal of Autism and Developmental Disorders 3/2017

09-01-2017 | Original Paper

Training Parents of Youth with Autism Spectrum Disorder to Advocate for Adult Disability Services: Results from a Pilot Randomized Controlled Trial

Auteurs: Julie Lounds Taylor, Robert M. Hodapp, Meghan M. Burke, Sydney N. Waitz-Kudla, Carol Rabideau

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 3/2017

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

This study presents findings from a pilot randomized controlled trial, testing a 12-week intervention to train parents of youth with autism spectrum disorder (ASD) to advocate for adult disability services—the Volunteer Advocacy Program-Transition (VAP-T). Participants included 41 parents of youth with ASD within 2 years of high school exit, randomly assigned to a treatment (N = 20) or wait-list control (N = 21) group. Outcomes, collected before and after the intervention, included parental knowledge about adult services, advocacy skills-comfort, and empowerment. The VAP-T had acceptable feasibility, treatment fidelity, and acceptability. After participating in the VAP-T, intervention parents (compared to controls) knew more about the adult service system, were more skilled/comfortable advocating, and felt more empowered.
Literatuur
go back to reference American Association on Intellectual and Developmental Disabilities (2010). Intellectual disability: Definition, classification, and systems of supports (11th edn.). Washington, DC: American Association on Intellectual and Developmental Disabilities. American Association on Intellectual and Developmental Disabilities (2010). Intellectual disability: Definition, classification, and systems of supports (11th edn.). Washington, DC: American Association on Intellectual and Developmental Disabilities.
go back to reference Amijo-Olivo, S., Warren, S., & Magee, D. (2009). Intention to treat analysis, compliance, drop-outs and how to deal with missing data in clinical research: A review. Physical Therapy Reviews, 14, 36–49.CrossRef Amijo-Olivo, S., Warren, S., & Magee, D. (2009). Intention to treat analysis, compliance, drop-outs and how to deal with missing data in clinical research: A review. Physical Therapy Reviews, 14, 36–49.CrossRef
go back to reference Bickman, L., Heflinger, C. A., Northrup, D., Sonnichsen, S., & Schilling, S. (1998). Long term outcomes to family caregiver empowerment. Journal of Child and Family Studies, 7, 269–282.CrossRef Bickman, L., Heflinger, C. A., Northrup, D., Sonnichsen, S., & Schilling, S. (1998). Long term outcomes to family caregiver empowerment. Journal of Child and Family Studies, 7, 269–282.CrossRef
go back to reference Burke, M. M. (2013). Improving parent involvement: Training special education advocates. Journal of Disability Policy Studies, 23, 225–234.CrossRef Burke, M. M. (2013). Improving parent involvement: Training special education advocates. Journal of Disability Policy Studies, 23, 225–234.CrossRef
go back to reference Burke, M.M., Goldman, S.E., Hart, M.S., & Hodapp, R.M. (2016). Evaluating the efficacy of a special education advocacy training program. Journal of Policy and Practice in Intellectual Disabilities. doi:10.1111/jppi.12183. (Pre-published online 28 Oct 2016). Burke, M.M., Goldman, S.E., Hart, M.S., & Hodapp, R.M. (2016). Evaluating the efficacy of a special education advocacy training program. Journal of Policy and Practice in Intellectual Disabilities. doi:10.​1111/​jppi.​12183. (Pre-published online 28 Oct 2016).
go back to reference Campbell, D. T., & Stanley, J. C. (1966). Experimental and quasi-experimental designs for research. Chicago, IL: Rand McNally. Campbell, D. T., & Stanley, J. C. (1966). Experimental and quasi-experimental designs for research. Chicago, IL: Rand McNally.
go back to reference Castro, F. G., Barrera, M., & Holleran Steiker, L. K. (2010). Issues and challenges in design of culturally adapted evidence-based interventions. Annual Reviews of Clinical Psychology, 6, 213–239.CrossRef Castro, F. G., Barrera, M., & Holleran Steiker, L. K. (2010). Issues and challenges in design of culturally adapted evidence-based interventions. Annual Reviews of Clinical Psychology, 6, 213–239.CrossRef
go back to reference Constantino, J. N., & Gruber, C. P. (2012). Social Responsiveness Scale, Second Edition. Los Angeles, CA: Western Psychological Services. Constantino, J. N., & Gruber, C. P. (2012). Social Responsiveness Scale, Second Edition. Los Angeles, CA: Western Psychological Services.
go back to reference Davidson, P. W., Henderson, C. M., Janicki, M. P., Robinson, L. M., Bishop, K. M., Wells, A., et al. (2008). Ascertaining health-related information on adults with intellectual disabilities: Development and field testing of the Rochester Health Status Survey. Journal of Policy and Practice in Intellectual Disabilities, 5, 12–23.CrossRef Davidson, P. W., Henderson, C. M., Janicki, M. P., Robinson, L. M., Bishop, K. M., Wells, A., et al. (2008). Ascertaining health-related information on adults with intellectual disabilities: Development and field testing of the Rochester Health Status Survey. Journal of Policy and Practice in Intellectual Disabilities, 5, 12–23.CrossRef
go back to reference Dykens, E. M. (2015). Family adjustment and interventions in neurodevelopmental disorders. Current Opinion in Psychiatry, 28, 121–126.PubMed Dykens, E. M. (2015). Family adjustment and interventions in neurodevelopmental disorders. Current Opinion in Psychiatry, 28, 121–126.PubMed
go back to reference Erickson, A.S.G., Noonan, P. M., & McCall, Z. (2012). Effectiveness of online professional development for rural special educators. Rural Special Education Quarterly, 31, 22–32. Erickson, A.S.G., Noonan, P. M., & McCall, Z. (2012). Effectiveness of online professional development for rural special educators. Rural Special Education Quarterly, 31, 22–32.
go back to reference Individuals with Disabilities Improvement Education Act of 2004 (IDEA, P.L. 108–446). 20 U.S.C. 1400. Individuals with Disabilities Improvement Education Act of 2004 (IDEA, P.L. 108–446). 20 U.S.C. 1400.
go back to reference Guttierrez, L. M. (1994). Beyond coping: An empowerment perspective on stressful life events. Journal of Sociology and Social Welfare, 21, 201–219. Guttierrez, L. M. (1994). Beyond coping: An empowerment perspective on stressful life events. Journal of Sociology and Social Welfare, 21, 201–219.
go back to reference Hanley-Maxwell, C., Whitney-Thomas, J., & Pogoloff, S. M. (1995). The second shock: A qualitative study of parents’ perspectives and needs during their child’s transition from school to adult life. Journal of the Association for Persons with Severe Handicaps, 20, 3–15. Hanley-Maxwell, C., Whitney-Thomas, J., & Pogoloff, S. M. (1995). The second shock: A qualitative study of parents’ perspectives and needs during their child’s transition from school to adult life. Journal of the Association for Persons with Severe Handicaps, 20, 3–15.
go back to reference Hayes, S. A., & Watson, S. L. (2013). 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. Journal of Autism and Developmental Disorders, 43, 629–642.CrossRefPubMed Hayes, S. A., & Watson, S. L. (2013). 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. Journal of Autism and Developmental Disorders, 43, 629–642.CrossRefPubMed
go back to reference Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, 45, 212–229.CrossRefPubMed Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, 45, 212–229.CrossRefPubMed
go back to reference Hudson, T. M., Knight, V., & Collins, B. C. (2012). Perceived effectiveness of web conferencing software in the digital environment to deliver a graduate course in Applied Behavior Analysis. Rural Special Education Quarterly, 31, 27–39. Hudson, T. M., Knight, V., & Collins, B. C. (2012). Perceived effectiveness of web conferencing software in the digital environment to deliver a graduate course in Applied Behavior Analysis. Rural Special Education Quarterly, 31, 27–39.
go back to reference Koren, P. E., DeChillo, N., & Friesen, B. J. (1992). Measuring empowerment in families whose children have emotional disabilities: A brief questionnaire. Rehabilitation Psychology, 37, 305–321.CrossRef Koren, P. E., DeChillo, N., & Friesen, B. J. (1992). Measuring empowerment in families whose children have emotional disabilities: A brief questionnaire. Rehabilitation Psychology, 37, 305–321.CrossRef
go back to reference Kutash, K., Duchnowski, A., Green, A., & Ferron, J. (2011). Supporting parents who have youth with emotional disturbances through a parent-to-parent support program: A proof of concept study using random assignment. Administration and Policy in Mental Health and Mental Health Services Research, 38, 412–427.CrossRefPubMed Kutash, K., Duchnowski, A., Green, A., & Ferron, J. (2011). Supporting parents who have youth with emotional disturbances through a parent-to-parent support program: A proof of concept study using random assignment. Administration and Policy in Mental Health and Mental Health Services Research, 38, 412–427.CrossRefPubMed
go back to reference Lord, C., Rutter, M., DiLavore, P. C., Risi, S., Gotham, K., & Bisop, S. L. (2012). Autism Diagnostic Observation Schedule 2nd edition (ADOS-2). Los Angeles: Western Psychological Services. Lord, C., Rutter, M., DiLavore, P. C., Risi, S., Gotham, K., & Bisop, S. L. (2012). Autism Diagnostic Observation Schedule 2nd edition (ADOS-2). Los Angeles: Western Psychological Services.
go back to reference Petner-Arrey, J., Howell-Moneta, A., & Lysaght, R. (2015). Facilitating employment opportunities for adults with intellectual and developmental disability through parents and social networks. Disability and Rehabilitation, 38, 789–795.CrossRef Petner-Arrey, J., Howell-Moneta, A., & Lysaght, R. (2015). Facilitating employment opportunities for adults with intellectual and developmental disability through parents and social networks. Disability and Rehabilitation, 38, 789–795.CrossRef
go back to reference Resendez, M. G., Quist, R. M., & Matshazi, D.G.M. (2000). A longitudinal analysis of family empowerment and client outcomes. Journal of Child and Family Studies, 9, 449–460.CrossRef Resendez, M. G., Quist, R. M., & Matshazi, D.G.M. (2000). A longitudinal analysis of family empowerment and client outcomes. Journal of Child and Family Studies, 9, 449–460.CrossRef
go back to reference Rodriguez, J., Olin, S. S., Hoagwood, K. E., Shen, S., Burton, G., Radigan, M., & Jensen, P. S. (2011). The development and evaluation of a parent empowerment program for family peer advocates. Journal of Child and Family Studies, 20, 397–405.CrossRefPubMedPubMedCentral Rodriguez, J., Olin, S. S., Hoagwood, K. E., Shen, S., Burton, G., Radigan, M., & Jensen, P. S. (2011). The development and evaluation of a parent empowerment program for family peer advocates. Journal of Child and Family Studies, 20, 397–405.CrossRefPubMedPubMedCentral
go back to reference Roid, G. H. (2003). Stanford-Binet Intelligence Scales, Fifth Edition. Itasca, IL: Riverside Publishing. Roid, G. H. (2003). Stanford-Binet Intelligence Scales, Fifth Edition. Itasca, IL: Riverside Publishing.
go back to reference Sanders, M. R. (2008). Triple P-Positive Parenting Program as a public health approach to strengthening parenting. Journal of Family Psychology, 22, 506–517.CrossRefPubMed Sanders, M. R. (2008). Triple P-Positive Parenting Program as a public health approach to strengthening parenting. Journal of Family Psychology, 22, 506–517.CrossRefPubMed
go back to reference Sanderson, K. A., Burke, M. M., Urbano, R. C., Arnold, C. K., & Hodapp, R. M. (in press). Who helps? Characteristics and correlates of informal supporters to adults with disabilities. American Journal on Intellectual and Developmental Disabilities. Sanderson, K. A., Burke, M. M., Urbano, R. C., Arnold, C. K., & Hodapp, R. M. (in press). Who helps? Characteristics and correlates of informal supporters to adults with disabilities. American Journal on Intellectual and Developmental Disabilities.
go back to reference Shachar, M., & Neumann, Y. (2010). Twenty years of research on the academic performance differences between traditional and distance learning: Summative meta-analysis and trend examination. Journal of Online Learning and Teaching, 6, 318–334. Shachar, M., & Neumann, Y. (2010). Twenty years of research on the academic performance differences between traditional and distance learning: Summative meta-analysis and trend examination. Journal of Online Learning and Teaching, 6, 318–334.
go back to reference Shattuck, P. T., Narendorf, S. C., Cooper, B., Sterzing, P. R., Wagner, M., & Taylor, J. L. (2012). Postsecondary education and employment among youth with an autism spectrum disorder. Pediatrics, 129, 1042–1049.CrossRefPubMedPubMedCentral Shattuck, P. T., Narendorf, S. C., Cooper, B., Sterzing, P. R., Wagner, M., & Taylor, J. L. (2012). Postsecondary education and employment among youth with an autism spectrum disorder. Pediatrics, 129, 1042–1049.CrossRefPubMedPubMedCentral
go back to reference Shattuck, P. T., Wagner, M., Narendorf, S., Sterzing, P., & Hensley, M. (2011). Post-high school service use among young adults with an autism spectrum disorder. Archives of Pediatric and Adolescent Medicine, 165, 141–146.CrossRef Shattuck, P. T., Wagner, M., Narendorf, S., Sterzing, P., & Hensley, M. (2011). Post-high school service use among young adults with an autism spectrum disorder. Archives of Pediatric and Adolescent Medicine, 165, 141–146.CrossRef
go back to reference Singer, G.H.S., Ethridge, B. L., & Aldana, S. I. (2007). Primary and secondary effects of parenting and stress management interventions for parents of children with disabilities: A meta-analysis. Mental Retardation and Developmental Disabilities Research Reviews, 13, 357–369.CrossRefPubMed Singer, G.H.S., Ethridge, B. L., & Aldana, S. I. (2007). Primary and secondary effects of parenting and stress management interventions for parents of children with disabilities: A meta-analysis. Mental Retardation and Developmental Disabilities Research Reviews, 13, 357–369.CrossRefPubMed
go back to reference Sparrow, S. D., Cicchetti, D. V., & Balla, D. A. (2005). Vineland-II Adaptive Behavior Scales: Survey Forms Manual. Circle Pines, MN: AGS Publishing. Sparrow, S. D., Cicchetti, D. V., & Balla, D. A. (2005). Vineland-II Adaptive Behavior Scales: Survey Forms Manual. Circle Pines, MN: AGS Publishing.
go back to reference Taylor, J. L., Dove, D., Veenstra-Vander Weele, J., et al. (2012). Interventions for adolescents and young adults with autism spectrum disorders (Comparative Effectiveness Reviews, No. 65). Rockville, MD: Agency for Healthcare Research and Quality (US), August. Taylor, J. L., Dove, D., Veenstra-Vander Weele, J., et al. (2012). Interventions for adolescents and young adults with autism spectrum disorders (Comparative Effectiveness Reviews, No. 65). Rockville, MD: Agency for Healthcare Research and Quality (US), August.
go back to reference Taylor, J. L., & Henninger, N. A. (2015). Frequency and correlates of service access among youth with autism transitioning to adulthood. Journal of Autism and Developmental Disorders, 45, 179–191.CrossRefPubMedPubMedCentral Taylor, J. L., & Henninger, N. A. (2015). Frequency and correlates of service access among youth with autism transitioning to adulthood. Journal of Autism and Developmental Disorders, 45, 179–191.CrossRefPubMedPubMedCentral
go back to reference Taylor, J. L., & Seltzer, M. M. (2011). Employment and post-secondary education activities for young adults with autism spectrum disorders during the transition to adulthood. Journal of Autism and Developmental Disorders, 41, 566–574.CrossRefPubMedPubMedCentral Taylor, J. L., & Seltzer, M. M. (2011). Employment and post-secondary education activities for young adults with autism spectrum disorders during the transition to adulthood. Journal of Autism and Developmental Disorders, 41, 566–574.CrossRefPubMedPubMedCentral
go back to reference Timmons, J. C., Butterworth, J., Whitney-Thomas, J., Allen, D., & McIntyre, J. P. (2004). Managing service delivery systems and the role of parents during their children’s transitions. Journal of Rehabilitation, 70, 19–26. Timmons, J. C., Butterworth, J., Whitney-Thomas, J., Allen, D., & McIntyre, J. P. (2004). Managing service delivery systems and the role of parents during their children’s transitions. Journal of Rehabilitation, 70, 19–26.
go back to reference Weiss, J. A., Cappadocia, M. C., MacMullin, J. A., Viecili, M., & Lunsky, Y. (2012). The impact of child problem behaviors of children with ASD on parent mental health: The mediating role of acceptance and empowerment. Autism: The International Journal of Research and Practice, 16, 261–274.CrossRef Weiss, J. A., Cappadocia, M. C., MacMullin, J. A., Viecili, M., & Lunsky, Y. (2012). The impact of child problem behaviors of children with ASD on parent mental health: The mediating role of acceptance and empowerment. Autism: The International Journal of Research and Practice, 16, 261–274.CrossRef
go back to reference Weiss, J. A., MacMullin, J. A., & Lunsky, Y. (2015). Empowerment and parent gain as mediators and moderators of distress in mothers of children with autism spectrum disorders. Journal of Child and Family Studies, 24, 2038–2045.CrossRef Weiss, J. A., MacMullin, J. A., & Lunsky, Y. (2015). Empowerment and parent gain as mediators and moderators of distress in mothers of children with autism spectrum disorders. Journal of Child and Family Studies, 24, 2038–2045.CrossRef
go back to reference What Works Clearinghouse. (2011). Procedures and Standards Handbook, Version 2.1: Institute of Educational Sciences, US Department of Education. What Works Clearinghouse. (2011). Procedures and Standards Handbook, Version 2.1: Institute of Educational Sciences, US Department of Education.
Metagegevens
Titel
Training Parents of Youth with Autism Spectrum Disorder to Advocate for Adult Disability Services: Results from a Pilot Randomized Controlled Trial
Auteurs
Julie Lounds Taylor
Robert M. Hodapp
Meghan M. Burke
Sydney N. Waitz-Kudla
Carol Rabideau
Publicatiedatum
09-01-2017
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 3/2017
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-016-2994-z

Andere artikelen Uitgave 3/2017

Journal of Autism and Developmental Disorders 3/2017 Naar de uitgave