Top

Tip

Swipe om te navigeren naar een ander artikel

Gepubliceerd in:

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

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.

vorige artikel Developmental Markers of Genetic Liability to Autism in Parents: A Longitudinal, Multigenerational Study

volgende artikel Evaluation of Visual Pedagogy in Dental Check-ups and Preventive Practices Among 6–12-Year-Old Children with Autism

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.

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

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

Burke, M. M. (2013). Improving parent involvement: Training special education advocates. Journal of Disability Policy Studies, 23, 225–234. CrossRef

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).

Campbell, D. T., & Stanley, J. C. (1966). Experimental and quasi-experimental designs for research. Chicago, IL: Rand McNally.

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

Cidav, Z., Marcus, S. C., & Mandell, D. S. (2012). Implications of childhood autism for parental employment and earnings. Pediatrics, 129, 617–623. CrossRefPubMedPubMedCentral

Cohen, J. (1992). A power primer. Psychological Bulletin, 112, 155–159. CrossRefPubMed

Constantino, J. N., & Gruber, C. P. (2012). Social Responsiveness Scale, Second Edition. Los Angeles, CA: Western Psychological Services.

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

Dykens, E. M. (2015). Family adjustment and interventions in neurodevelopmental disorders. Current Opinion in Psychiatry, 28, 121–126. PubMed

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.

Individuals with Disabilities Improvement Education Act of 2004 (IDEA, P.L. 108–446). 20 U.S.C. 1400.

Guttierrez, L. M. (1994). Beyond coping: An empowerment perspective on stressful life events. Journal of Sociology and Social Welfare, 21, 201–219.

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.

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

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

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.

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

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

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.

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

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

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

Roid, G. H. (2003). Stanford-Binet Intelligence Scales, Fifth Edition. Itasca, IL: Riverside Publishing.

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

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.

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.

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., 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

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

Sparrow, S. D., Cicchetti, D. V., & Balla, D. A. (2005). Vineland-II Adaptive Behavior Scales: Survey Forms Manual. Circle Pines, MN: AGS Publishing.

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., & 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., & 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

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.

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., 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

What Works Clearinghouse. (2011). Procedures and Standards Handbook, Version 2.1: Institute of Educational Sciences, US Department of Education.

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

Bohn Stafleu van Loghum

Tip

Swipe om te navigeren naar een ander artikel

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

Andere artikelen Uitgave 3/2017

Predictors of Treatment Effectiveness for Youth with ASD and Comorbid Anxiety Disorders: It all Depends on the Family?

Predictors of Self-Injurious Behavior and Self-Restraint in Autism Spectrum Disorder: Towards a Hypothesis of Impaired Behavioral Control

The Cognitive and Behavioral Phenotypes of Individuals with CHRNA7 Duplications

Increased Eye Contact During Conversation Compared to Play in Children With Autism

Communication Intervention for Young Children with Severe Neurodevelopmental Disabilities Via Telehealth

Emotion Regulation and Parent Co-Regulation in Children with Autism Spectrum Disorder