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Online Dissemination of Resources and Services for Parents of Children with Autism Spectrum Disorders (ASDs): a Systematic Review of Evidence

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Abstract

As autism spectrum disorder (ASD) diagnoses continue to rise, traditional support services are unable to meet the demand. Parents are increasingly turning to online resources, which vary across a continuum of interactivity from passive online information seeking to highly interactive eHealth models, allowing engagement for parents in innovative ways. Although online resources may provide necessary opportunities for information dissemination, outreach, intervention, and support systems, there is cause for reservation. The current study summarizes results of a systematic review (N = 27 articles) of the evidence surrounding parent use of online resources. Recommendations for researchers to better leverage online tools for the advancement of service provision and child outcomes are discussed.

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References

  • Anderson, P. (2007). What is Web 2.0?: ideas, technologies and implications for education (Issue Brief No. 1). Bristol: JISC.

    Google Scholar 

  • Breitenstein, S. M., Gross, D., & Christophersen, R. (2014). Digital delivery methods of parenting training interventions: a systematic review. Worldviews on Evidence-based Nursing, 11(3), 168–176. doi:10.1111/wvn.12040.

    Article  PubMed  Google Scholar 

  • Chowdhury, J., Drummond, J., Fleming, D., & Neitfeld, S. (2002). Content analysis of online autism specific sites. Journal on Developmental Disabilities, 9(2), 157–165. Retrieved from http://www.oadd.org/.

    Google Scholar 

  • Clifford, T., & Minnes, P. (2013a). Logging on: evaluating an online support group for parents of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(7), 1662–1675. doi:10.1007/s10803-012-1714-6.

    Article  PubMed  Google Scholar 

  • Clifford, T., & Minnes, P. (2013b). Who participates in support groups for parents of children with autism spectrum disorders? The role of beliefs and coping style. Journal of Autism and Developmental Disorders, 43, 179–187. doi:10.1007/s10803-012-1561-5.

    Article  PubMed  Google Scholar 

  • Di Pietro, N. C., Whiteley, L., Mizgalewicz, A., & Illes, J. (2013). Treatments for neurodevelopmental disorders: evidence, advocacy and the internet. Journal of Autism and Developmental Disorders, 43, 122–133. doi:10.1007/s10803-012-1551-7.

    Article  PubMed  Google Scholar 

  • Eysenbach, G., & Köhler, C. (2002). How do consumers search for and appraise health information on the world wide web? Qualitative study using focus groups, usability tests, and in-depth interviews. British Medical Journal, 324, 573–577. doi:10.1136/bmj.324.7337.573.

    Article  PubMed  PubMed Central  Google Scholar 

  • Ferdig, R. E., Amberg, H. G., Elder, J. H., Donaldson, S. A., Valcante, G., & Bendixen, R. (2009). Autism and family interventions through technology: a description of a web-based tool to educate fathers of children with autism. International Journal of Web-based Learning and Teaching Technologies, 4(3), 55–69. doi:10.4018/jwbltt.2009090804.

    Article  Google Scholar 

  • Fisher, W., Luczynski, K., Hood, S., Lesser, A., Machado, M., & Piazza, C. (2014). Preliminary findings of a randomized clinical trial of a virtual training program for applied behavior analysis technicians. Research in Autism Spectrum Disorders, 8, 1044–1054. doi:10.1016/j.rasd.2014.05.002.

    Article  Google Scholar 

  • Fleischmann, A. (2004). Narratives published on the internet by parents of children with autism: what do they reveal and why is it so important? Focus on Autism and Other Developmental Disabilities, 19, 35–43. doi:10.1177/10883576040190010501.

    Article  Google Scholar 

  • Fleischmann, A. (2005). The hero’s story and autism: grounded theory study of websites for parents of children with autism. Autism, 9, 299–316. doi:10.1177/1362361305054410.

    Article  PubMed  Google Scholar 

  • Gibbs, V., & Toth-Cohen, S. (2011). Family-centered occupational therapy and telerehabilitation for children with autism spectrum disorders. Occupational Therapy in Health Care, 25, 298–314. doi:10.3109/07380577.2011.606460.

    Article  PubMed  Google Scholar 

  • Gooding, I., Klaas, B., Yager, J. D., & Kanchanaraksa, S. (2013). Massive open online courses in public health. Frontiers in Public Health, 1, 1–8. doi:10.3389/fpubh.2013.00059.

    Article  Google Scholar 

  • Grant, N., Rodger, S., & Hoffman, T. (2015a). Evaluation of autism-related health information on the web. Journal of Applied Research in Intellectual Disabilities, 28, 276–282. doi:10.1111/jar.12127.

    Article  PubMed  Google Scholar 

  • Grant, N., Rodger, S., & Hoffman, T. (2015b). Intervention decision-making processes and information preferences of parents of children with autism spectrum disorders. Child: Care, Health, and Development, 1–10. doi:10.1111/cch.12296.

  • Hall, C. M., & Bierman, K. L. (2015). Technology-assisted interventions for parents of young children: emerging practices, current research, and future directions. Early Childhood Research Quarterly, 33, 21–32. doi:10.1016/j.ecresq.2015.05.003.

    Article  PubMed  PubMed Central  Google Scholar 

  • Hall, C. M., Culler, E. D., & Frank-Webb, A. (2016). Online resources, support, and e-health for families of children with disabilities: a review of empirical evidence regarding attitudes, use, and efficacy. In M. M. Cruz-Cuhna, I. M. Miranda, R. Martinho, & R. Rijo (Eds.), Encyclopedia of E-Health and Telemedicine (pp. 722–743). Hershey: Medical Information Science Reference.

    Chapter  Google Scholar 

  • Hamad, C., Serna, R., Morrison, L., & Fleming, R. (2010). Extending the reach of early intervention training for practitioners: a preliminary investigation of an online curriculum for teaching behavioral intervention knowledge in autism to families and service providers. Infants and Young Children, 23, 195–208. doi:10.1097/IYC.0b013e3181e32d5e.

    Article  PubMed  PubMed Central  Google Scholar 

  • Heitzman-Powell, L. S., Buzhardt, J., Rusinko, L. C., & Miller, T. M. (2014). Formative evaluation of an ABA outreach training program for parents of children with autism in remote areas. Focus on Autism and Other Developmental Disabilities, 1, 23–38. doi:10.1177/1088357613504992.

    Article  Google Scholar 

  • Huang, Y. M., Liang, T. H., Su, Y. N., & Chen, N. S. (2012). Empowering personalized learning with an interactive e-book learning system for elementary school students. Education Technology Research and Development, 60, 703–722. doi:10.1007/s11423-012-9237-6.

    Article  Google Scholar 

  • Ingersoll, B., & Berger, N. I. (2015). Parent engagement with a telehealth-based parent-medicated intervention program for children with autism spectrum disorders: predictors of program use and parent outcomes. Journal of Medical Internet Research, 17, 1–22.

    Article  Google Scholar 

  • Jang, J., Dixon, D. R., Tarbox, J., Granpeesheh, D., Kornack, J., & de Nocker, Y. (2012). Randomized trial of an eLearning program for training family members of children with autism in the principles and procedures of applied behavior analysis. Research in Autism Spectrum Disorders, 6, 852–856. doi:10.1016/j.rasd.2011.11.004.

    Article  Google Scholar 

  • Jones, D. J., Forehand, R., Cuellar, J., Kincaid, C., Parent, J., Fenton, N., & Goodrum, N. (2013). Harnessing innovative technologies to advance children’s mental health: behavioral parent training as an example. Clinical Psychology Review, 33, 241–252. doi:10.1016/j.cpr.2012.11.003.

    Article  PubMed  Google Scholar 

  • Kobak, K. A., Stone, W. L., Wallace, E., Warren, Z., & Swanson, A. (2011). A web-based tutorial for parents of young children with autism: results from a pilot study. Telemedicine and e-Health, 17, 804–808. doi:10.1089/tmj.2011.0060.

    Article  PubMed  PubMed Central  Google Scholar 

  • Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M., & van Dyck, P. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005–2006. Pediatrics, 122, e1149–e1158. doi:10.1542/peds.2008-1057.

    Article  PubMed  Google Scholar 

  • Kramer, A. D. I., Guillory, J. E., & Hancock, J. T. (2014). Experimental evidence of massive-scale emotional contagion through social networks. Proceedings of the National Academy of Sciences of the United States of America, 111, 8788–8790. doi:10.1073/pnas.1320040111.

    Article  PubMed  PubMed Central  Google Scholar 

  • Liyanagunawardena, T. R., Adams, A. A., & Williams, S. A. (2013). MOOCs: a systematic study of the published literature 2008-2012. The International Review of Research in Open and Distance Learning, 14. Retrieved from http://www.irrodl.org/index.php/irrodl/article/view/1455/2531.

  • Mackert, M., Kahlor, L., Tyler, D., & Gustafson, J. (2009). Designing e-health interventions for low-health-literate culturally diverse parents: addressing the obesity epidemic. Telemedicine and e-Health, 15, 672–677. doi:10.1089/tmj.2009.0012.

    Article  PubMed  PubMed Central  Google Scholar 

  • Mackintosh, V. H., Myers, B. J., & Goin-Kochel, R. P. (2005). Sources of information and support used by parents of children with autism spectrum disorders. Journal on Developmental Disabilities, 12(1), 41–51. Retrieved from www.oadd.org.

    Google Scholar 

  • Malykhina, E. (2014). Fact or fiction?: video games are the future of education. Retrieved from: http://www.scientificamerican.com/article/fact-or-fiction-video-games-are-the-future-of-education/.

  • Ondersma, S. J., Svikis, D. S., Thacker, L. R., Beatty, J. R., & Lockhart, N. (2014). Computer-delivered screening and brief intervention (e-SBI) for postpartum drug use: a randomized trial. Journal of Substance Abuse Treatment, 46, 52–59. doi:10.1016/j.jsat.2013.07.013.

    Article  PubMed  Google Scholar 

  • Ossebaard, H. C., van Gemert-Pijnen, J. E., Sorbi, M. J., & Seydel, E. R. (2010). A study of a Dutch online decision aid for parents of children with ADHD. Journal of Telemedicine and Telecare, 16, 15–19. doi:10.1258/jtt.2009.001006.

    Article  PubMed  Google Scholar 

  • Pagliari, C., Sloan, D., Gregor, P., Sullivan, F., Detmer, D., Kahan, J., … MacGillivray, S. (2005). What is eHealth (4): a scoping exercise to map the field. Journal of Medical Internet Research, 7, e9. doi:10.2196/jmir.7.1.e9.

  • Phillips, W. (2011). LOLing at tragedy: Facebook trolls, memorial pages, and resistance to grief online. Retrieved from http://firstmonday.org/ojs/index.php/fm/article/view/3168/3115.

  • Polyak, A., Kubina, R. M., & Girirajan, S. (2015). Comorbidity of intellectual disability confounds ascertainment of autism: implications for genetic diagnosis. American Journal of Medical Genetics Part B: Neuropsychiatric Genetics, 168, 600–608. doi:10.1002/ajmg.b.32338.

    Article  Google Scholar 

  • Powell, G., & McCauley, A. W. (2012). Blogging as a way to promote family-professional partnerships. Young Exceptional Children, 15, 20–31. doi:10.1177/1096250611428491.

    Article  Google Scholar 

  • Reichow, B., Halpern, J. I., Steinhoff, T. B., Letsinger, N., Naples, A., & Volkmar, F. R. (2012a). Characteristics and quality of autism websites. Journal of Autism and Developmental Disorders, 42, 1263–1274. doi:10.1007/s10803-011-1342-6.

    Article  PubMed  Google Scholar 

  • Reichow, B., Naples, A., Steinhoff, T., Halpern, J., & Volkmar, F. R. (2012b). Brief report: consistency of search engine rankings for autism websites. Journal of Autism and Developmental Disorders, 42, 1275–1279. doi:10.1007/s10803-012-1480-5.

    Article  PubMed  Google Scholar 

  • Reichow, B., Shefcyk, A., & Bruder, M. B. (2013). Quality comparison of websites related to developmental disabilities. Research in developmental disabilities, 34(10), 3077–3083. doi:10.1016/j.ridd.2013.06.013.

    Article  PubMed  Google Scholar 

  • Reichow, B., Gelbar, N. W., Mouradjian, K., Shefcyk, A., & Smith, I. C. (2014). Characteristics of international websites with information on developmental disabilities. Research in developmental disabilities, 35, 2293–2298. doi:10.1016/j.ridd.2014.05.028.

    Article  PubMed  Google Scholar 

  • Reinke, J. S., & Solheim, C. A. (2015). Online social support experiences of mothers of children with autism spectrum disorder. Journal of Child and Family Studies, 24, 2364–2373. doi:10.1007/s10826-014-0039-9.

    Article  Google Scholar 

  • Schieve, L. A., Blumberg, S. J., Rice, C., Visser, S. N., & Boyle, C. (2007). The relationship between autism and parenting stress. Pediatrics, 119, S114–S121. doi:10.1542/peds.2006-2089Q.

    Article  PubMed  Google Scholar 

  • Self-Brown, S., & Whitaker, D. J. (2008). Parent-focused child maltreatment prevention: improving assessment, intervention, and dissemination with technology. Child Maltreatment, 13, 400–416. doi:10.1177/1077559508320059.

    Article  PubMed  Google Scholar 

  • Smith, A. (2013). Technology adoption by lower income populations. Retrieved from: http://www.pewinternet.org/2013/10/08/technology-adoption-by-lower-income-populations/.

  • Stephenson, J., Carter, M., & Kemp, C. (2012). Quality of the information on educational and therapy interventions provided on the web sites of national autism associations. Research in Autism Spectrum Disorders, 6, 11–18. doi:10.1016/j.rasd.2011.08.002.

    Article  Google Scholar 

  • Suess, A. N., Romani, P. W., Wacker, D. P., Dyson, S., M., Kuhle, J. L., Lee, J. F., … Waldron, D. B. (2014). Evaluating the treatment fidelity of parents who conduct in-home functional communication training with coaching via telehealth. Journal of Behavioral Education, 23, 34–59. doi: 10.1007/s10864-013-9183-3.

  • Thomas, K. C., Ellis, A. R., McLaurin, C., Daniels, J., & Morrissey, J. P. (2007). Access to care for autism-related services. Journal of Autism and Developmental Disorders, 37, 1902–1912. doi:10.1007/s10803-006-0323-7.

    Article  PubMed  Google Scholar 

  • Vismara, L. A., Young, G. S., & Rogers, S. J. (2012). Telehealth for expanding the reach of early autism training to parents. Autism Research and Treatment, 2012, 1–12. doi:10.1155/2012/121878.

    Article  Google Scholar 

  • Vismara, L. A., McCormick, C., Young, S. G., Nadhan, A., & Monlux, K. (2013). Preliminary findings of a telehealth approach to parent training in autism. Journal of Autism and Developmental Disorders, 43, 2953–2969. doi:10.1007/s10803-013-1841-8.

    Article  PubMed  Google Scholar 

  • Wacker, D. P., Lee, J. F., Padilla Dalmau, Y. C., Kopelman, T. G., Lindgren, S. D., Kuhle, J., Pelzel, K. E., Dyson, S., Schieltz, K. M., & Waldron, D. B. (2013). Conducting functional communication training via telehealth to reduce the problem behavior of young children with autism. Journal of developmental and physical disabilities, 25(1), 35–48. doi:10.1007/s10882-012-9314-0.

    Article  PubMed  Google Scholar 

  • Wainer, A. L., & Ingersoll, B. R. (2013). Disseminating ASD interventions: a pilot study of a distance learning program for parents and professionals. Journal of Autism and Developmental Disorders, 43, 11–24. doi:10.1007/s10803-012-1538-4.

    Article  PubMed  Google Scholar 

  • Wainer, A. L., & Ingersoll, B. R. (2015). Increasing access to an ASD imitation training intervention via a telehealth parent training program. Journal of Autism and Developmental Disorders, 45, 3877–3890. doi:10.1007/s10803-014-2186-7.

    Article  PubMed  Google Scholar 

  • Whitney, R. V., & Smith, G. (2015). Emotional disclosure through journal writing: telehealth intervention for maternal stress and mother-child relationships. Journal of Autism and Developmental Disorders, 45, 3735–3745. doi:10.1007/s10803-014-2332-2.

    Article  PubMed  Google Scholar 

  • Zeman, L. D., Swanke, J., & Doktor, J. (2011a). Measurable successes for children with ASD: perspectives from mother's virtual journals. School Social Work Journal, 36(1), 61–78. Retrieved from http://iassw.org/about/school-social-work-journal/.

    Google Scholar 

  • Zeman, L. D., Swanke, J., & Doktor, J. (2011b). Strengths classification of social relationships among cybermothers raising children with autism spectrum disorders. The School Community Journal, 21, 37–51. Retrieved from http://www.schoolcommunitynetwork.org/SCJ.aspx.

    Google Scholar 

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Hall, C.M., Culler, E.D. & Frank-Webb, A. Online Dissemination of Resources and Services for Parents of Children with Autism Spectrum Disorders (ASDs): a Systematic Review of Evidence. Rev J Autism Dev Disord 3, 273–285 (2016). https://doi.org/10.1007/s40489-016-0083-z

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