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Journal of Autism and Developmental Disorders

Gepubliceerd in:

24-04-2021 | Original Paper

Community-based Parent Education for Caregivers of Children Newly Diagnosed with Autism Spectrum Disorder

Auteurs: Anna Milgramm, Laura L. Corona, Cortney Janicki-Menzie, Kristin V. Christodulu

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 3/2022

Abstract

Parents of children with autism spectrum disorder (ASD) frequently report high levels of stress related to the process of receiving an ASD diagnosis and navigating the intervention landscape. Parent education programs offer one approach to providing families with support, information, and resources following a child’s diagnosis. Given the heterogeneity of such programs, there have been calls within the literature for increased characterization and systematic evaluation of this type of parent-focused intervention. The present study describes the structure and content of a community-based, group-format parent education program for families of children newly diagnosed with ASD. Following program participation, parents reported reductions in parenting stress, increases in knowledge and empowerment, and high levels of satisfaction. Implications and future research directions are discussed.

vorige artikel The Relationship between Motor Skills and Intelligence in Children with Autism Spectrum Disorder

volgende artikel The Feasibility of Magnetic Resonance Imaging in a Non-Selective Comprehensive Clinical Trial in Pediatric Autism Spectrum Disorder

Abidin, R. R. (1995). Parenting stress index, third edition: Professional manual. Odessa, FL: Psychological Assessment Resources, Inc.

Abidin, R. R. (2012). Parenting stress index, fourth edition: Professional manual. Lutz, FL: Psychological Assessment Resources, Inc.

Amant, H. G. S., Schrager, S. M., Peña-Ricardo, C., Williams, M. E., & Vanderbilt, D. L. (2018). Language barriers impact access to services for children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 48(2), 333–340.CrossRef

Autism Speaks. (2008). 100 day kit for newly diagnosed families of young children. Autism Speaks Incorporated.

Bearss, K., Burrell, T. L., Stewart, L., & Scahill, L. (2015a). Parent training in autism spectrum disorder: What’s in a name? Clinical Child and Family Psychology Review, 18(2), 170–182. https://doi.org/10.1007/s10567-015-0179-5.CrossRefPubMedPubMedCentral

Bearss, K., Johnson, C., Smith, T., Lecavalier, L., Swiezy, N., Aman, M., & Sukhodolsky, D. G. (2015b). Effect of parent training vs parent education on behavioral problems in children with autism spectrum disorder: A randomized clinical trial. JAMA, 313(15), 1524–1533. https://doi.org/10.1001/jama.2015.3150.CrossRefPubMed

Bishop-Fitzpatrick, L., & Kind, A. J. (2017). A scoping review of health disparities in autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(11), 3380–3391. https://doi.org/10.1007/s10803-017-3251-9.CrossRefPubMedPubMedCentral

Constantino, J. N., & Gruber, C. P. (2012). Social responsiveness scale: SRS-2. Western Psychological Services.

Constantino, J. N. (2013). Social responsiveness scale. In F. R. Volkmar (Ed.), Encyclopedia of autism spectrum disorders. (pp. 2919–2929). NY: Springer.CrossRef

Crane, L., Chester, J. W., Goddard, L., Henry, L. A., & Hill, E. (2016). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism, 20(2), 153–162. https://doi.org/10.1177/1362361315573636.CrossRefPubMed

Crane, L., Batty, R., Adeyinka, H., Goddard, L., Henry, L. A., & Hill, E. L. (2018). Autism diagnosis in the United Kingdom: Perspectives of autistic adults, parents and professionals. Journal of Autism and Developmental Disorders, 48(11), 3761–3772. https://doi.org/10.1007/s10803-018-3639-1.CrossRefPubMedPubMedCentral

Dawson-Squibb, J. J., Davids, E. L., Harrison, A. J., Molony, M. A., & de Vries, P. J. (2020). Parent education and training for autism spectrum disorders: Scoping the evidence. Autism, 24(1), 7–25. https://doi.org/10.1177/1362361319841739.CrossRefPubMed

Dawson-Squibb, J. J., & de Vries, P. J. (2019). Developing an evaluation framework for parent education and training in autism spectrum disorder: Results of a multi-stakeholder process. Journal of Autism and Developmental Disorders, 49(11), 4468–4481. https://doi.org/10.1007/s10803-019-04176-w.CrossRefPubMed

Farmer, J., & Reupert, A. (2013). Understanding autism and understanding my child with autism: An evaluation of a group parent education program in rural Australia. Australian Journal of Rural Health, 21(1), 20–27. https://doi.org/10.1111/ajr.12004.CrossRef

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(3), 629–642. https://doi.org/10.1007/s10803-012-1604-y.CrossRefPubMed

Hosozawa, M., Sacker, A., & Cable, N. (2020). Timing of diagnosis, depression and self-harm in adolescents with autism spectrum disorder. Autism. https://doi.org/10.1177/1362361320945540.CrossRefPubMedPubMedCentral

Hyman, S. L., Levy, S. E., & Myers, S. M. (2020). Identification, evaluation, and management of children with autism spectrum disorder. Pediatrics, 145(1), e20193447. https://doi.org/10.1542/peds.2019-3447.CrossRefPubMed

Kalkbrenner, A. E., Daniels, J. L., Emch, M., Morrissey, J., Poole, C., & Chen, J. C. (2011). Geographic access to health services and diagnosis with an autism spectrum disorder. Annals of Epidemiology, 21(4), 304–310. https://doi.org/10.1016/j.annepidem.2010.11.010.CrossRefPubMedPubMedCentral

Karst, J. S., & Van Hecke, A. V. (2012). Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, 15(3), 247–277. https://doi.org/10.1007/s10567-012-0119-6.CrossRefPubMed

Koren, P. E., DeChillo, N., & Friesen, B. J. (1992). Measuring empowerment in families whose children have emotional disabilities: A brief questionnaire. Rehabilitation Psychology, 37(4), 305. https://doi.org/10.1037/h0079106.CrossRef

Lecavalier, L., Leone, S., & Wiltz, J. (2006). The impact of behaviour problems on caregiver stress in young people with autism spectrum disorders. Journal of Intellectual Disability Research, 50(3), 172–183. https://doi.org/10.1111/j.1365-2788.2005.00732.x.CrossRefPubMed

Lord, C., Rutter, M., DiLavore, P., & Risi, S. (1999). Autism diagnostic observation schedule (ADOS). Western Psychological Services.

Maenner, M. J., Shaw, K. A., Baio, J., Washington, A., Patrick, M., DiRienzo, M., & Dietz, P. M. (2020). Prevalence of autism spectrum disorder among children aged 8 Years—Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016. Morbidity and Mortality Weekly Report: Surveillance Summaries, 69(4), 1–12.PubMedCentral

Magaña, S., Lopez, K., & Machalicek, W. (2017). Parents taking action: A psycho-educational intervention for Latino parents of children with autism spectrum disorder. Family Process, 56(1), 59–74. https://doi.org/10.1111/famp.12169.CrossRefPubMed

Moh, T. A., & Magiati, I. (2012). Factors associated with parental stress and satisfaction during the process of diagnosis of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 6(1), 293–303. https://doi.org/10.1016/j.rasd.2011.05.011.CrossRef

Myers, S. M., & Johnson, C. P. (2007). Management of children with autism spectrum disorders. Pediatrics, 120(5), 1162–1182. https://doi.org/10.1542/peds.2007-2362.CrossRefPubMed

Nevill, R. E., Lecavalier, L., & Stratis, E. A. (2018). Meta-analysis of parent-mediated interventions for young children with autism spectrum disorder. Autism, 22(2), 84–98. https://doi.org/10.1177/1362361316677838.CrossRefPubMed

O’Donovan, K. L., Armitage, S., Featherstone, J., McQuillin, L., Longley, S., & Pollard, N. (2019). Group-based parent training interventions for parents of children with autism spectrum disorders: A literature review. Review Journal of Autism and Developmental Disorders, 6(1), 85–95. https://doi.org/10.1007/s40489-018-00155-6.CrossRef

Pickard, K. E., & Ingersoll, B. R. (2016). Quality versus quantity: The role of socioeconomic status on parent-reported service knowledge, service use, unmet service needs, and barriers to service use. Autism, 20(1), 106–115. https://doi.org/10.1177/1362361315569745.CrossRefPubMed

Rabba, A. S., Dissanayake, C., & Barbaro, J. (2019). Parents’ experiences of an early autism diagnosis: Insights into their needs. Research in Autism Spectrum Disorders, 66, 101415. https://doi.org/10.1016/j.rasd.2019.101415.CrossRef

Rivard, M., Terroux, A., Parent-Boursier, C., & Mercier, C. (2014). Determinants of stress in parents of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 44(7), 1609–1620. https://doi.org/10.1007/s10803-013-2028-z.CrossRefPubMed

Rodriguez, G., Hartley, S. L., & Bolt, D. (2019). Transactional relations between parenting stress and child autism symptoms and behavior problems. Journal of Autism and Developmental Disorders, 49(5), 1887–1898. https://doi.org/10.1007/s10803-018-3845-x.CrossRefPubMedPubMedCentral

Rutter, M., Le Couteur, A., & Lord, C. (2003). Autism diagnostic interview-revised. Los Angeles, CA: Western Psychological Services, 29, 30.

Schultz, T. R., Schmidt, C. T., & Stichter, J. P. (2011). A review of parent education programs for parents of children with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 26(2), 96–104. https://doi.org/10.1177/1088357610397346.CrossRef

Shivers, C. M., Sonnier-Netto, L., & Lee, G. K. (2019). Needs and experiences of family caregivers of individuals with autism spectrum disorders across the lifespan. Journal of Policy and Practice in Intellectual Disabilities, 16(1), 21–29. https://doi.org/10.1111/jppi.12272.CrossRef

Smith, K. A., Gehricke, J. G., Iadarola, S., Wolfe, A., & Kuhlthau, K. A. (2020). Disparities in service use among children with autism: A systematic review. Pediatrics, 145(Supplement 1), S35–S46. https://doi.org/10.1542/peds.2019-1895G.CrossRefPubMed

Stahmer, A. C., Vejnoska, S., Iadarola, S., Straiton, D., Segovia, F. R., Luelmo, P., Morgan, E. H., Soo Lee, H., Javed, A., Bronstein, B., Hochheimer, S., Cho, E., Aranbarri, A., Mandell, D., McGhee Hassrick, E., Smith, T., & Kasari, C. (2019). Caregiver voices: Cross-cultural input on improving access to autism services. Journal of Racial and Ethnic Health Disparities, 6(4), 752–773. https://doi.org/10.1007/s40615-019-00575-y.CrossRefPubMedPubMedCentral

Steiner, A. M., Koegel, L. K., Koegel, R. L., & Ence, W. A. (2012). Issues and theoretical constructs regarding parent education for autism spectrum disorders. Journal of Autism and Developmental Disorders, 42(6), 1218–1227. https://doi.org/10.1007/s10803-011-1194-0.CrossRefPubMed

Stuart, M., & McGrew, J. H. (2009). Caregiver burden after receiving a diagnosis of an autism spectrum disorder. Research in Autism Spectrum Disorders, 3(1), 86–97. https://doi.org/10.1016/j.rasd.2008.04.006.CrossRef

Tonge, B., Brereton, A., Kiomall, M., Mackinnon, A., King, N., & Rinehart, N. (2006). Effects on parental mental health of an education and skills training program for parents of young children with autism: A randomized controlled trial. Journal of the American Academy of Child & Adolescent Psychiatry, 45(5), 561–569. https://doi.org/10.1097/01.chi.0000205701.48324.26.CrossRef

Twoy, R., Connolly, P. M., & Novak, J. M. (2007). Coping strategies used by parents of children with autism. Journal of the American Academy of Nurse Practitioners, 19(5), 251–260. https://doi.org/10.1111/j.1745-7599.2007.00222.x.CrossRefPubMed

Volkmar, F., Siegel, M., Woodbury-Smith, M., King, B., McCracken, J., & State, M. (2014). Practice parameter for the assessment and treatment of children and adolescents with autism spectrum disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 53(2), 237–257. https://doi.org/10.1016/j.jaac.2013.10.013.CrossRef

Wainer, A. L., Hepburn, S., & McMahon Griffith, E. (2017). Remembering parents in parent-mediated early intervention: An approach to examining impact on parents and families. Autism, 21(1), 5–17. https://doi.org/10.1177/1362361315622411.CrossRefPubMed

Weitlauf, A. S., Vehorn, A. C., Taylor, J. L., & Warren, Z. E. (2014). Relationship satisfaction, parenting stress, and depression in mothers of children with autism. Autism, 18(2), 194–198. https://doi.org/10.1177/1362361312458039.CrossRefPubMed

Woodgate, R. L., Ateah, C., & Secco, L. (2008). Living in a world of our own: The experience of parents who have a child with autism. Qualitative Health Research, 18(8), 1075–1083. https://doi.org/10.1177/1049732308320112.CrossRefPubMed

World Health Organization. (2013). Autism spectrum disorders & other developmental disorders: From raising awareness to building capacity. Geneva, Switzerland: WHO Document Production Services.

Whitaker, P. (2002). Supporting families of preschool children with autism: What parents want and what helps. Autism, 6(4), 411–426. https://doi.org/10.1177/1362361302006004007.CrossRefPubMed

Zwaigenbaum, L., & Penner, M. (2018). Autism spectrum disorder: Advances in diagnosis and evaluation. BMJ, 361. https://doi.org/10.1136/bmj.k1674.

Titel: Community-based Parent Education for Caregivers of Children Newly Diagnosed with Autism Spectrum Disorder
Auteurs: Anna Milgramm
Laura L. Corona
Cortney Janicki-Menzie
Kristin V. Christodulu
Publicatiedatum: 24-04-2021
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 3/2022
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-021-05025-5

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