Effects of a parent training using telehealth: Equity and access to early intervention for rural families

Keywords: Early intervention, Autism, Parent training, Telehealth, Rural, Family-practices

Abstract

Children living in geographically rural areas may have limited access to early, intensive evidence-based interventions suggesting children residing in these areas are less likely to experience positive outcomes than their urban-dwelling peers.  Telehealth offers an option to rural families seeking early intervention by using communication technologies where providers are able to consult and deliver services in real-time over geographical distances. To our knowledge, no other study has examined the implementation of P-ESDM in rural natural environments within the framework of the state’s early intervention program. Using a multiple baseline design across participants, the current study investigated the effects of the parent-Early Start Denver Model implemented within a rural northeastern state’s existing IDEA Part C early intervention program.  Parents demonstrated increased fidelity to intervention strategies and reported satisfaction with the program’s ease of implementation and observed child gains.  Statistically significant pre-to post- change in children’s ASD symptomatology were reported for the domains of communication, social reciprocity and repetitive and restricted behaviors.  Support for parent-mediated interventions, the importance of fidelity of implementation for sustainability of intervention strategies, and the need to explore telehealth as a viable service delivery option to improve developmental trajectories for toddlers with autism are discussed.

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References

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). American Psychiatric Publishing.

Ashburner, J., Vickerstaff, S., Beetge, J., & Copley, J. (2016). Remote versus face-to-face delivery of early intervention programs for children with autism spectrum disorders: Perceptions of rural families and service providers. Research in Autism Spectrum Disorders, 23, 1-14. DOI: https://doi.org/10.1016/j.rasd.2015.11.011

Baggett, K. M., Davis, B., Feil, E. G., Sheeber, L. L., Landry, S. H., Carta, J. J., & Leve, C. (2010). Technologies for expanding the reach of evidence-based interventions: Preliminary results for promoting social-emotional development in early childhood. Topics in Early Childhood Special Education, 29(4), 226-238. DOI: https://doi.org/10.1177/0271121409354782

Bearss, K., Burrell, T. L., Challam S. A., Postorino, V., Gillespie, S. E., Crooks, C., & Scahill, L. (2018). Feasibility of parent training via telehealth for children with autism spectrum disorder and disruptive behavior: A demonstration pilot. Journal of Autism and Developmental Disorders, 48(4), 1020-1030. DOI: https://doi.org/10.1007/s10803-017-3363-2

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

Beaudoin, A. J., Sébire, G., & Couture, M. (2019). Parent-mediated intervention tends to improve parent-child engagement, and behavioral outcomes of toddlers with ASD-positive screening: A randomized crossover trial. Research in Autism Spectrum Disorders, 66, 1-12. DOI: https://doi.org/10.1016/j.rasd.2019.101416

Brian, J. A., Smith, I. M., Zwaigenbaum, L., & Bryson, S. E. (2017). Cross-site randomized control trial of the social ABCs caregiver-mediated intervention for toddlers with autism spectrum disorder. Autism Research, 10(10), 1700-1711. DOI: https://doi.org/10.1002/aur.1818

Caron, V., Bérubé, A., & Paquet, A. (2017). Implementation evaluation of early intensive behavioral intervention programs for children with autism spectrum disorders: A systematic review of studies in the last decade. Evaluation and Program Planning, 62, 1-8. DOI: https://doi.org/10.1016/j.evalprogplan.2017.01.004

Chawarska, K., Macari, S. L., Volkmar, F. R., Kim, S. H., & Shic, F. (2014). Autism and the autism spectrum: Diagnostic concepts. In F. R. Volkmar, R. Paul, S. J. Rogers, & K. A. Pelphrey, (Eds.), Handbook of autism and pervasive developmental disorders (4th ed., pp. 3-27). Wiley.

Estes, A., Vismara, L., Mercado, C., Fitzpatrick, A., Elder, L., Greenson, J., … Rogers, S. (2014). The impact of parent-delivered intervention on very young children with autism. Journal of Autism and Developmental Disorders, 44(2), 353-365. DOI: https://doi.org/10.1007/s10803-013-1874-z

Fettig, A., Barton, E. E., Carter, A. S., & Eisenhower, A. S. (2016). Using e-Coaching to support an early intervention provider's implementation of a functional assessment-based intervention. Infants & Young Children, 29(2), 130–147. DOI: https://doi.org/10.1097/IYC.0000000000000058

Fettig, A., & Ostrosky, M. M. (2011). Collaborating with parents in reducing children's challenging behaviors: Linking functional assessment to intervention. Child Development Research, Article ID 835941, 1-10. DOI: https://doi.org/10.1155/2011/835941

Green, J., Pickles, A., Pasco, G., Bedford, R., Wan, M.W., Elsabbagh, M., … Johnson, M. (2017). Randomised trial of a parent‐mediated intervention for infants at high risk for autism: Longitudinal outcomes to age 3 years. The Journal of Child Psychology and Psychiatry, 58(12), 1330-1340. DOI: https://doi.org/10.1111/jcpp.12728

Horner, R. H., Carr, E. G., Halle, J., McGee, G., Odom, S., & Wolery, M. (2005). The use of single-subject research to identify evidence-based practice in special education. Exceptional Children, 71(2), 165-179. DOI: https://doi.org/10.1177/001440290507100203

Hyman, S. L., Levy, S. E., & Myers, S. M. (2020). AAP Council on children with disabilities, section on developmental and behavioral pediatrics: Identification, evaluation, and management of children with autism spectrum disorder. Pediatrics, 145(1), 1-64.

Individuals with Disabilities Education Act, 20 U.S.C. § 1400 (2004). Retrieved from https://sites.ed.gov/idea/

Kanne, S. M., Mazurek, M. O., Sikora, D., Bellando, J., Branum-Martin, L., Handen, B., … Warren, Z. (2014). The autism impact measure (AIM): Initial development of a new tool for treatment outcome measurement. Journal of Autism and Developmental Disorders, 44(1), 168-179. DOI: https://doi.org/10.1007/s10803-013-1862-3

Kasari, C., Gulsrud, A., Freeman, S., Paparella, T., & Hellemann, G. (2012). Longitudinal follow-up of children with autism receiving targeted interventions on joint attention and play. Journal of the American Academy of Child & Adolescent Psychiatry, 51(5), 487-495. DOI: https://doi.org/10.1016/j.jaac.2012.02.019

Kasari, C., Gulsrud, A. C., Wong, C., Kwon, S., & Locke, J. (2010). Randomized controlled caregiver mediated joint engagement intervention for toddlers with autism. Journal of Autism and Developmental Disorders, 40(9), 1045–1056. DOI: https://doi.org/10.1007/s10803-010-0955-5

Kratochwill, T. R., Hitchcock, J., Horner, R. H., Levin, J. R., Odom, S. L., Rindskopf, D. M., & Shadish, W. R. (2010). Single-case designs technical documentation. Retrieved from http://ies.ed.gov/ncee/wwc/pdf/wwc_scd.pdf

Lin, C. E., & Koegel, R. (2018). Treatment for higher-order restricted repetitive behaviors (H-RRB) in children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(11), 3831-3845. DOI: https://doi.org/10.1007/s10803-018-3637-3

Little, L. M., Wallisch, A., Pope, E., & Dunn, W. (2018). Acceptability and cost comparison of a telehealth intervention for families of children with autism. Infants & Young Children, 31(4), 275-286. DOI: https://doi.org/10.1097/IYC.0000000000000126

Maenner, M.J., Shaw, K.A., Baio, J., Washington, A., Patrick, M., DiRienzo, M., … Dietz, P. (2020). Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016. MMWR Surveillance Summaries, 69(4), 1–12. DOI: https://doi.org/10.15585/mmwr.ss6904a1

Martinez, M., Thomas, K. C., Williams, C. S., Christian, R., Crais, E., Pretzel, R., & Hooper, S. R. (2018). Family experiences with the diagnosis of autism spectrum disorder: System barriers and facilitators of efficient diagnosis. Journal of Autism and Developmental Disorders, 48(7), 2368–2378. DOI: https://doi.org/10.1007/s10803-018-3493-1

Matson, J. L., & Goldin, R. L. (2014). What is in the future of assessment for autism spectrum disorders: Short and long term. Research in Autism Spectrum Disorders, 8(3), 209-213. DOI: https://doi.org/10.1016/j.rasd.2013.01.007

Matson, J. L., & Konst, M. J. (2013). What is the evidence for long term effects of early autism interventions? Research in Autism Spectrum Disorders, 7(3), 475-479. DOI: https://doi.org/10.1016/j.rasd.2012.11.005

Matson, J. L., & Rieske, R. D. (2014). Are outcome measures for early intensive treatment of autism improving? Research in Autism Spectrum Disorders, 8(3), 178-185. DOI: https://doi.org/10.1016/j.rasd.2013.11.006

McDuffie, A., Oakes, A., Machalicek, W., Ma, M., Bullard, L., Nelson, S., & Abbeduto, L. (2016). Early language intervention using distance video-teleconferencing: A pilot study of young boys with fragile X syndrome and their mothers. American Journal of Speech-Language Pathology, 25(1), 46-66. DOI: https://doi.org/10.1044/2015_AJSLP-14-0137

McIntyre, L. L., & Zemantic, P. K. (2017). Examining services for young children with autism spectrum disorder: Parent satisfaction and predictors of service utilization. Early Childhood Education Journal, 45(6), 727-734. DOI: https://doi.org/10.1007/s10643-016-0821-y

McWilliam, R. A., (2010). Routines-based early intervention: Supporting young children and their families. Maryland: Paul H. Brookes.

Mello, M. P., Goldman, S. E., Urbano, R. C., & Hodapp, R. M. (2016). Services for children with autism spectrum disorder: Comparing rural and non-rural communities. Education and Training in Autism and Developmental Disabilities, 51(4), 355-365.

Nefdt, N., Koegel, R., Singer, G., & Gerber, M. (2010). The use of a self-directed learning program to provide introductory training in pivotal response treatment to parents of children with autism. Journal of Positive Behavior Interventions, 12(1), 23-32. DOI: https://doi.org/10.1177/1098300709334796

Neely, L., Rispoli, M., Gerow, S., & Hong, E. R. (2016). Preparing interventionists via telepractice in incidental teaching for children with autism. Journal of Behavioral Education, 25(4), 393-416. DOI: https://doi.org/10.1007/s10864-016-9250-7

Olsen, S., Fiechtl, B., & Rule, S. (2012). An evaluation of virtual home visits in early intervention: Feasibility of “Virtual Intervention". The Volta Review, 112(3), 267-281. DOI: https://doi.org/10.17955/tvr.112.3.m.702

Parker, R. I., Vannest, K. J., & Davis, J. L. (2011). Effect size in single-case research: A review of nine nonoverlap techniques. Behavior Modification, 35(4), 303-322. DOI: https://doi.org/10.1177/0145445511399147

Pickles, A., Le Couteur, A., Leadbitter, K., Salomone, E., Cole-Fletcher, R., Tobin, H., … Green, J. (2016). Parent-mediated social communication therapy for young children with autism (PACT): Long-term follow-up of a randomised controlled trial. The Lancet, 388(10059), 2501-2509. DOI: https://doi.org/10.1016/S0140-6736(16)31229-6

Pierce, K., Gazestani, V. H., Bacon, E., Barnes, C. C., Cha, D., Nalabolu, S., … Courchesne, E. (2019). Evaluation of the diagnostic stability of the early autism spectrum disorder phenotype in the general population starting at 12 months. JAMA Pediatrics, 173(6), 578-587. DOI: https://doi.org/10.1001/jamapediatrics.2019.0624

Reichow, B., Hume, K., Barton, E. E., & Boyd, B. A. (2018). Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). Cochrane Database of Systematic Reviews. 5, 1-56. DOI: https://doi.org/10.1002/14651858.CD009260.pub3

Rivard, M., Morin, M., Mercier, C., Terroux, A., Mello, C., & Lépine, A. (2017). Social validity of a training and coaching program for parents of children with autism spectrum disorder on a waiting list for early behavioral intervention. Journal of Child and Family Studies, 26(3), 877-887. DOI: https://doi.org/10.1007/s10826-016-0604-5

Roberts, M. Y., & Kaiser A. P. (2011). The effectiveness of parent-implemented language interventions: A meta-analysis. American Journal of Speech-Language Pathology, 20(3), 180–199. DOI: https://doi.org/10.1044/1058-0360(2011/10-0055)

Rogers, S. J., & Dawson, G. (2010). Early Start Denver Model for young children with autism: Promoting language, learning, and engagement. New York: Guilford Press.

Rogers, S. J., Dawson, G., & Vismara, L. A. (2012). An early start for your child with autism: Using everyday activities to help kids connect, communicate, and learn. New York: Guilford Press.

Scruggs, T. E., & Mastropieri, M. A. (1998). Summarizing single-subject research: Issues and applications. Behavior Modification, 22(3), 221-242. DOI: https://doi.org/10.1177/01454455980223001

Scruggs, T. E., & Mastropieri, M. A. (2001). How to summarize single-participant research: Ideas and applications. Exceptionality, 9(4), 227-244. DOI: https://doi.org/10.1207/S15327035EX0904_5

Scruggs, T. E., Mastropieri, M. A., & Casto, G. (1987). The quantitative synthesis of single-subject research: Methodology and validation. Remedial and Special Education, 8(2), 24-33. DOI: https://doi.org/10.1177/074193258700800206

Shire, S. Y., Gulsrud, A., & Kasari, C. (2016). Increasing responsive parent–child interactions and joint engagement: Comparing the influence of parent-mediated intervention and parent psychoeducation. Journal of Autism and Developmental Disorders, 46(5), 1737-1747. DOI: https://doi.org/10.1007/s10803-016-2702-z

Siller, M., & Morgan, L. (2018). Systematic review of research evaluating parent-mediated interventions for young children with autism: Years 2013 to 2015. In M. Siller & L. Morgan (Eds.) Handbook of parent-implemented interventions for very young children with autism (1st ed., pp. 1-21). Springer. DOI: https://doi.org/10.1007/978-3-319-90994-3_1

Simacek, J., Dimian, A., & McComas, J. (2017). Communication intervention for young children with severe neurodevelopmental disabilities via telehealth. Journal of Autism and Developmental Disorders, 47(3), 744-767. DOI: https://doi.org/10.1007/s10803-016-3006-z

Smith-Young, J., Chafe, R., & Audas, R. (2020). “Managing the wait”: Parents’ experiences in accessing diagnostic and treatment services for children and adolescents diagnosed with autism spectrum disorder. Health Services Insights, 13, 1-10. DOI: https://doi.org/10.1177/1178632920902141

Suess, A. N., Wacker, D. P., Schwartz, J. E., Lustig, N., & Detrick, J. (2016). Preliminary evidence on the use of telehealth in an outpatient behavior clinic. Journal of Applied Behavior Analysis, 49(3), 686-692. DOI: https://doi.org/10.1002/jaba.305

Vismara, L. A., McCormick, C. E., Wagner, A. L., Monlux, K., Nadhan, A., & Young, G. S. (2018). Telehealth parent training in the Early Start Denver Model: Results from a randomized controlled study. Focus on Autism and Other Developmental Disabilities, 33(2), 67-79. DOI: https://doi.org/10.1177/1088357616651064

Wacker, D. P., Lee, J. F., Dalmau, Y. C. P., Kopelman, T. G., Lindgren, S. D., Kuhle, J., … 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: https://doi.org/10.1007/s10882-012-9314-0

Wainer, A. L., & Ingersoll, B. R. (2015). Increasing access to an ASD imitation intervention via a telehealth parent training program. Journal of Autism and Developmental Disorders, 45(12), 3877-3890. DOI: https://doi.org/10.1007/s10803-014-2186-7

Wallace, K. S., & Rogers, S. J. (2010). Intervening in infancy: Implications for autism spectrum disorders. Journal of Child Psychology and Psychiatry, 51(12), 1300-1320. DOI: https://doi.org/10.1111/j.1469-7610.2010.02308.x

Webb, S., Jones, E., Kelly, J. & Dawson, G. (2014). The motivation for very early intervention for infants at high risk for autism spectrum disorders. International Journal of Speech-Language Pathology, 16(1), 36-42. DOI: https://doi.org/10.3109/17549507.2013.861018

What Works Clearinghouse. (2020). Procedures and standards handbook (Version 4.1). Washington, DC: U.S. Department of Education, Institute of Education Sciences, National Center for Education Evaluation and Regional Assistance. Retrieved from https://ies.ed.gov/ncee/wwc/handbooks

Wong, C., Odom, S. L., Hume, K. A., Cox, A. W., Fettig, A., Kucharczyk, S., … Schultz, T. R. (2015). Evidence-based practices for children, youth, and young adults with autism spectrum disorder: A comprehensive review. Journal of Autism and Developmental Disorders, 45(7), 1951-66. DOI: https://doi.org/10.1007/s10803-014-2351-z

Zwaigenbaum, L., Bauman, M. L., Choueiri, R., Kasari, C., Carter, A., Granpeesheh, D., … Natowicz, M. R. (2015). Early intervention for children with autism spectrum disorder under 3 years of age: Recommendations for practice and research. Pediatrics, 136(Supplement 1), 60-S81. DOI: https://doi.org/10.1542/peds.2014-3667E

Published
2020-07-28
How to Cite
Rooks-Ellis, D., Howorth, S. K., Megan Kunze, Susane Boulette, & Ella Sulinski. (2020). Effects of a parent training using telehealth: Equity and access to early intervention for rural families. Journal of Childhood, Education & Society, 1(2), 141-166. https://doi.org/10.37291/2717638X.20201242