Skip to main content
main-content
Top

Tip

Swipe om te navigeren naar een ander artikel

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

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

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

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.

Met onderstaand(e) abonnement(en) heeft u direct toegang:

BSL Psychologie Totaal

Met BSL Psychologie Totaal blijf je als professional steeds op de hoogte van de nieuwste ontwikkelingen binnen jouw vak. Met het online abonnement heb je toegang tot een groot aantal boeken, protocollen, vaktijdschriften en e-learnings op het gebied van psychologie en psychiatrie. Zo kun je op je gemak en wanneer het jou het beste uitkomt verdiepen in jouw vakgebied.

Literatuur
go back to reference 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 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
go back to reference 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 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
go back to reference 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 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
go back to reference Bergen, D. (2002). The role of pretend play in children’s cognitive development. Early Childhood Research and Practice, 4(1), n1. Bergen, D. (2002). The role of pretend play in children’s cognitive development. Early Childhood Research and Practice, 4(1), n1.
go back to reference 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 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
go back to reference 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 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
go back to reference 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 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
go back to reference 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 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
go back to reference 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 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
go back to reference 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 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
go back to reference 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 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
go back to reference 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., 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
go back to reference 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., & 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
go back to reference 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., Lee, E., & Roof, E. (2011). Prader–Willi syndrome and autism spectrum disorders: An evolving story. Journal of Neurodevelopmental Disorders, 3(3), 225. CrossRefPubMedPubMedCentral
go back to reference 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., & 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
go back to reference 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 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
go back to reference 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 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
go back to reference 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 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
go back to reference Hoffmann, J., & Russ, S. (2012). Pretend play, creativity, and emotion regulation in children. Psychology of Aesthetics, Creativity, and the Arts, 6(2), 175. CrossRef Hoffmann, J., & Russ, S. (2012). Pretend play, creativity, and emotion regulation in children. Psychology of Aesthetics, Creativity, and the Arts, 6(2), 175. CrossRef
go back to reference 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 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
go back to reference 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. 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.
go back to reference 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 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
go back to reference Kaufman, A. S., & Kaufman, N. L. (2004). Kaufman brief intelligence test: KBIT 2; manual. Bloomington, MN: Pearson. Kaufman, A. S., & Kaufman, N. L. (2004). Kaufman brief intelligence test: KBIT 2; manual. Bloomington, MN: Pearson.
go back to reference 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 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
go back to reference 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 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
go back to reference Lillard, A. S. (1993). Pretend play skills and the child’s theory of mind. Child Development, 64(2), 348–371. CrossRefPubMed Lillard, A. S. (1993). Pretend play skills and the child’s theory of mind. Child Development, 64(2), 348–371. CrossRefPubMed
go back to reference 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 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
go back to reference 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 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
go back to reference 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 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
go back to reference 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 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
go back to reference 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 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
go back to reference 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 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
go back to reference 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 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
go back to reference 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 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
go back to reference 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. (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
go back to reference 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 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
go back to reference 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 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
go back to reference 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 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
Metagegevens
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