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

Deborah Rooks-Ellis; Sarah K.  Howorth; Megan Kunze; Susane Boulette; Ella Sulinski

doi:10.37291/2717638X.20201242

Authors

Deborah Rooks-Ellis University of Maine https://orcid.org/0000-0002-4317-1593
Sarah K. Howorth University of Maine https://orcid.org/0000-0002-4292-301X
Megan Kunze University of Oregon https://orcid.org/0000-0002-4449-2719
Susane Boulette Maine Child Development Services https://orcid.org/0000-0003-4566-7995
Ella Sulinski University of Maine https://orcid.org/0000-0002-1830-5609

DOI:

https://doi.org/10.37291/2717638X.20201242

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.

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