Top

Journal of Autism and Developmental Disorders

Tip

Swipe om te navigeren naar een ander artikel

Gepubliceerd in:

13-06-2017 | Original Paper

Evaluating the Feasibility of a Play-Based Telehealth Intervention Program for Children with Prader–Willi Syndrome

Auteurs: Anastasia Dimitropoulos, Olena Zyga, Sandra Russ

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 9/2017

Abstract

Here we report the feasibility and acceptability of telehealth for direct intervention in children with Prader–Willi syndrome (PWS). Children with PWS have social-cognitive challenges that are similar to children with ASD. However, developing behavioral interventions for individuals with PWS is faced with the significant challenge of enrolling enough participants for local studies where multiple visits per week are indicated for effective intervention. This study delivered a 6-week play-based intervention via telehealth directly to eight children with PWS (6–12 years). Participants completed the program with minimal behavioral or technological difficulty (#sessions M = 11.875/12). Behavioral Intervention Rating Scale results indicate good acceptability (M = 5.54/6.00). These findings support using telehealth in rare disorders and delivering intervention directly to children with developmental delays through this modality.

vorige artikel Social Media Use, Friendship Quality, and the Moderating Role of Anxiety in Adolescents with Autism Spectrum Disorder

volgende artikel Quality of Life in Parents of Young Adults with ASD: EpiTED Cohort

Agree, E. M. (2014). The potential for technology to enhance independence for those aging with a disability. Disability and Health Journal, 7(1), S33–S39. CrossRefPubMed

Barton, E. E., & Wolery, M. (2008). Teaching pretend play to children with disabilities: A review of the literature. Topics in Early Childhood Special Education, 28(2), 109–125. CrossRef

Bennett, J. A., Germani, T., Haqq, A. M., & Zwaigenbaum, L. (2015). Autism spectrum disorder in Prader–Willi syndrome: A systematic review. American Journal of Medical Genetics Part A, 167(12), 2936–2944. CrossRef

Bergen, D. (2002). The role of pretend play in children’s cognitive development. Early Childhood Research and Practice, 4(1), n1.

Brewer, J. L., Taber-Doughty, T., & Kubik, S. (2010). Safety assessment of a home-based telecare system for adults with developmental disabilities in Indiana: A multi-stakeholder perspective. Journal of Telemedicine and Telecare, 16(5), 265–269. CrossRefPubMed

Cassidy, S. B., Schwartz, S., Miller, J. L., & Driscoll, D. J. (2012). Prader–Willi syndrome. Genetics in Medicine, 14(1), 10–26. doi: 10.1038/gim.0b013e31822bead0. CrossRefPubMed

Charman, T., Baron-Cohen, S., Swettenham, J., Baird, G., Cox, A., & Drew, A. (2000). Testing joint attention, imitation, and play as infancy precursors to language and theory of mind. Cognitive Development, 15(4), 481–498. CrossRef

Cox, N. S., Alison, J. A., Rasekaba, T., & Holland, A. E. (2012). Telehealth in cystic fibrosis: A systematic review. Journal of Telemedicine and Telecare, 18(2), 72–78. CrossRefPubMed

Descheemaeker, M.-J., Govers, V., Vermeulen, P., & Fryns, J.-P. (2006). Pervasive developmental disorders in Prader–Willi syndrome: The Leuven experience in 59 subjects and controls. American Journal of Medical Genetics Part A, 140(11), 1136–1142. CrossRefPubMed

Díez-Juan, M., Schneider, A., Phillips, T., Lozano, R., Tassone, F., Solomon, M., & Hagerman, R. J. (2014). Parent-delivered touchscreen intervention for children with fragile X syndrome. Intractable and Rare Diseases Research, 3(4), 166. CrossRefPubMedPubMedCentral

Dimitropoulos, A., Ho, A., & Feldman, B. (2013). Social responsiveness and competence in Prader–Willi syndrome: Direct comparison to autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(1), 103–113. CrossRefPubMed

Duncan, A. B., Velasquez, S. E., & Nelson, E.-L. (2014). Using videoconferencing to provide psychological services to rural children and adolescents: A review and case example. Journal of Clinical Child and Adolescent Psychology, 43(1), 115–127. CrossRefPubMed

Dykens, E. M., Cassidy, S. B., & King, B. H. (1999). Maladaptive behavior differences in Prader–Willi syndrome due to paternal deletion versus paternal uniparental disomy. American Journal on Mental Retardation, 104(1), 67–77. CrossRefPubMed

Dykens, E. M., & Kasari, C. (1997). Maladaptive behavior in children with Prader–Willi syndrome, down syndrome, and nonspecific mental retardation. American Journal on Mental Retardation, 102(3), 228–237. CrossRefPubMed

Dykens, E. M., Lee, E., & Roof, E. (2011). Prader–Willi syndrome and autism spectrum disorders: An evolving story. Journal of Neurodevelopmental Disorders, 3(3), 225. CrossRefPubMedPubMedCentral

Dykens, E. M., & Roof, E. (2008). Behavior in Prader–Willi syndrome: Relationship to genetic subtypes and age. Journal of Child Psychology and Psychiatry, 49(9), 1001–1008. CrossRefPubMed

Dykens, E. M., & Rosner, B. A. (1999). Refining behavioral phenotypes: Personality-motivation in Williams and Prader–Willi syndromes. American Journal on Mental Retardation, 104(2), 158–169. CrossRefPubMed

Elliott, S. N., & Treuting, M. V. B. (1991). The Behavior Intervention Rating Scale: Development and validation of a pretreatment acceptability and effectiveness measure. Journal of School Psychology, 29(1), 43–51. CrossRef

Harrell, K. M., Wilkins, S. S., Connor, M. K., & Chodosh, J. (2014). Telemedicine and the evaluation of cognitive impairment: The additive value of neuropsychological assessment. Journal of the American Medical Directors Association, 15(8), 600–606. CrossRefPubMed

Hoffmann, J., & Russ, S. (2012). Pretend play, creativity, and emotion regulation in children. Psychology of Aesthetics, Creativity, and the Arts, 6(2), 175. CrossRef

Holland, A. J., Whittington, J. E., Butler, J., Webb, T., Boer, H., & Clarke, D. (2003). Behavioural phenotypes associated with specific genetic disorders: Evidence from a population-based study of people with Prader–Willi syndrome. Psychological Medicine, 33(1), 141–153. CrossRefPubMed

Ingersoll, B., Wainer, A. L., Berger, N. I., Pickard, K. E., & Bonter, N. (2016). Comparison of a self-directed and therapist-assisted telehealth parent-mediated intervention for children with ASD: A pilot RCT. Journal of Autism and Developmental Disorders, 1–10.

Jennett, P. A., Hall, L. A., Hailey, D., Ohinmaa, A., Anderson, C., Thomas, R., ... Scott, R. E. (2003). The socio-economic impact of telehealth: A systematic review. Journal of Telemedicine and Telecare, 9(6), 311–320. CrossRefPubMed

Kaufman, A. S., & Kaufman, N. L. (2004). Kaufman brief intelligence test: KBIT 2; manual. Bloomington, MN: Pearson.

Langkamp, D. L., McManus, M. D., & Blakemore, S. D. (2015). Telemedicine for children with developmental disabilities: A more effective clinical process than office-based care. Telemedicine and E-Health, 21(2), 110–114. CrossRefPubMedPubMedCentral

Lewis, B. A., Freebairn, L., Heeger, S., & Cassidy, S. B. (2002). Speech and language skills of individuals with Prader–Willi syndrome. American Journal of Speech-Language Pathology, 11, 285–294. CrossRef

Lillard, A. S. (1993). Pretend play skills and the child’s theory of mind. Child Development, 64(2), 348–371. CrossRefPubMed

Martens, B. K., Witt, J. C., Elliott, S. N., & Darveaux, D. (1985). Teacher judgments concerning the acceptability of school-based interventions. Professional Psychology: Research and Practice, 16, 191–198. CrossRef

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. CrossRefPubMed

McGeary, D. D., McGeary, C. A., & Gatchel, R. J. (2012). A comprehensive review of telehealth for pain management: Where we are and the way ahead. Pain Practice, 12(7), 570–577. CrossRefPubMed

Meadan, H., & Daczewitz, M. E. (2015). Internet-based intervention training for parents of young children with disabilities: A promising service-delivery model. Early Child Development and Care, 185(1), 155–169. CrossRef

Moore, M., & Russ, S. W. (2006). Pretend play as a resource for children: Implications for pediatricians and health professionals. Journal of Developmental and Behavioral Pediatrics, 27(3), 237–248. CrossRefPubMed

Parmanto, B., Pulantara, I. W., Schutte, J. L., Saptono, A., & McCue, M. P. (2013). An integrated telehealth system for remote administration of an adult autism assessment. Telemedicine and e-Health, 19(2), 88–94. CrossRefPubMed

Vismara, L. A., McCormick, C., Young, G. S., Nadhan, A., & Monlux, K. (2013). Preliminary findings of a telehealth approach to parent training in autism. Journal of Autism and Developmental Disorders, 43(12), 2953–2969. CrossRefPubMed

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. CrossRefPubMed

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(1), 11–24. CrossRefPubMed

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. CrossRefPubMed

Whittington, J., & Holland, A. (2017). Cognition in people with Prader–Willi syndrome: Insights into genetic influences on cognitive and social development. Neuroscience and Biobehavioral Reviews, 72, 153–167. CrossRefPubMed

Zyga, O., Russ, S., Ievers-Landis, C. E., & Dimitropoulos, A. (2015). Assessment of pretend play in Prader–Willi syndrome: A direct comparison to autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(4), 975–987. CrossRefPubMed

Titel: Evaluating the Feasibility of a Play-Based Telehealth Intervention Program for Children with Prader–Willi Syndrome
Auteurs: Anastasia Dimitropoulos
Olena Zyga
Sandra Russ
Publicatiedatum: 13-06-2017
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 9/2017
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-017-3196-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 9/2017

Neural Correlates of Sensory Hyporesponsiveness in Toddlers at High Risk for Autism Spectrum Disorder

Diagnostic Substitution for Intellectual Disability: A Flawed Explanation for the Rise in Autism

Describing Function in ASD: Using the DSM-5 and Other Methods to Improve Precision

Evaluating the Social Validity of the Early Start Denver Model: A Convergent Mixed Methods Study

Respiratory Sinus Arrhythmia Predicts Restricted Repetitive Behavior Severity

Brief Report: The Negev Hospital-University-Based (HUB) Autism Database