Systematic review of factors that may influence the outcomes and generalizability of parent-mediated interventions for young children with autism spectrum disorder.
autism spectrum disorder
caregiver-mediated
intervention
parent-mediated
Journal
Autism research : official journal of the International Society for Autism Research
ISSN: 1939-3806
Titre abrégé: Autism Res
Pays: United States
ID NLM: 101461858
Informations de publication
Date de publication:
09 2019
09 2019
Historique:
received:
05
11
2018
accepted:
10
06
2019
pubmed:
12
7
2019
medline:
29
8
2020
entrez:
12
7
2019
Statut:
ppublish
Résumé
Parent mediated interventions have the potential to positively influence the interactions and developmental outcomes of children with autism spectrum disorder (ASD). However, a range of factors relating to children, parents and caregivers, and study design may impact on outcomes and thus the generalizability of these interventions to the broader community. The objective of this review was to examine factors that may influence the feasibility, appropriateness, effectiveness, and generalizability of parent mediated interventions for children with ASD. We conducted a systematic review, yielding 41 articles. There was substantial variability in the intervention type, intensity, and study quality. Notably, 46 different inclusion/exclusion criteria were reported across studies including factors relating to children's development, access to other services, comorbidities, parental factors, and access to the intervention. Fifteen articles included examination of 45 different factors potentially associated with, or influencing, intervention outcomes including child (e.g., language skills, ASD severity, cognition) and parent (e.g., adherence and fidelity, education) factors. Although there is clear evidence for an increasingly sophisticated (e.g., systematic phased research for some interventions) and diverse (e.g., studies in geographical diverse contexts including low-resource communities) approach to research examining parent mediated interventions, there remains a need for improved study quality and measurement consistency in research, including a detailed examination of factors that may predict, moderate, and mediate intervention effectiveness for children and their parents. Autism Res 2019, 12: 1304-1321. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Parent mediated interventions-in which parents adapt their own behavior or deliver interventions to help their children learn-appear to be effective for some children with autism spectrum disorder. In this review, we identified a range of child, parent, and study design factors that may influence intervention outcomes and ultimately the uptake of these approaches in the community. We suggest that research in this area could be further improved by ensuring that studies include diverse groups of children and parents, and by using study designs that help to establish not only if interventions work, but for whom they work best and why.
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Systematic Review
Langues
eng
Sous-ensembles de citation
IM
Pagination
1304-1321Subventions
Organisme : Griffith University - Simon Fraser University Collaborative Grant Scheme
ID : N/A
Pays : International
Organisme : National Health and Medical Research Council
ID : GNT1071811
Pays : International
Informations de copyright
© 2019 International Society for Autism Research, Wiley Periodicals, Inc.
Références
Bearss, K., Johnson, C., Handen, B., Smith, T., & Scahill, L. (2013). A pilot study of parent training in young children with autism spectrum disorders and disruptive behavior. Journal of Autism and Developmental Disorders, 43, 829-840.
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, 1700-1711.
Brian, J. A., Smith, I. M., Zwaigenbaum, L., Roberts, W., & Bryson, S. E. (2016). The social ABCs caregiver-mediated intervention for toddlers with autism spectrum disorder: Feasibility, acceptability, and evidence of promise from a multisite study. Autism Research, 9, 899-912.
Byford, S., Cary, M., Barrett, B., Aldred, C. R., Charman, T., Howlin, P., … Green, J. (2015). Cost-effectiveness analysis of a communication-focused therapy for pre-school children with autism: Results from a randomised controlled trial. BMC Psychiatry, 15, 316.
Carter, A. S., Messinger, D. S., Stone, W. L., Celimli, S., Nahmias, A. S., & Yoder, P. (2011). A randomized controlled trial of Hanen's ‘More Than Words’ in toddlers with early autism symptoms. Journal of Child Psychology and Psychiatry, 52, 741-752.
Casenhiser, D. M., Shanker, S. G., & Stieben, J. (2013). Learning through interaction in children with autism: Preliminary data from asocial-communication-based intervention. Autism, 17, 220-241.
CDC. (2014). Prevalence of autism spectrum disorders among children aged 8 years: Autism and developmental disabilities monitoring network. MMWR Surveillance Summaries, 63, 1-22.
Chiang, C.-H., Chu, C.-L., & Lee, T.-C. (2016). Efficacy of caregiver-mediated joint engagement intervention for young children with autism spectrum disorders. Autism, 20, 172-182.
Cook, J. M., Donovan, C. L., & Garnett, M. S. (2017). Parent-mediated cognitive behavioural therapy for young children with high-functioning autism spectrum disorder and anxiety: A randomized control trial. Early Child Development and Care, 189:1, 119-134. https://doi.org/10.1080/03004430.2017.1303684
Dawson, G., Rogers, S., Munson, J., Smith, M., Winter, J., Greenson, J., … Varley, J. (2010). Randomized, controlled trial of an intervention for toddlers with autism: The Early Start Denver Model. Pediatrics, 125, e17-e23.
Divan, G., Hamdani, S. U., Vajartkar, V., Minhas, A., Taylor, C., Aldred, C., … Patel, V. (2015). Adapting an evidence-based intervention for autism spectrum disorder for scaling up in resource-constrained settings: The development of the PASS intervention in South Asia. Global Health Action, 8, 27278.
Gulsrud, A. C., Hellemann, G., Shire, S., & Kasari, C. (2016). Isolating active ingredients in a parent-mediated social communication intervention for toddlers with autism spectrum disorder. Journal of Child Psychology and Pychiatry, and Allied Disciplines, 57, 606-613.
Guralnick, M. J., Hammond, M. A., Neville, B., & Connor, R. T. (2008). The relationship between sources and functions of social support and dimensions of child- and parent-related stress. Journal of Intellectual Disability Research, 52, 1138-1154.
Green, J., Charman, T., McConachie, H., Aldred, C., Slonims, V., Howlin, P., … PACT Consortium (2010). Parent-mediated communication-focused treatment in children with autism (PACT): a randomised controlled trial. Lancet (London, England), 375, 2152-2160. https://doi.org/10.1016/S0140-6736(10)60587-9
Hardan, A. Y., Gengoux, G. W., Berquist, K. L., Libove, R. A., Ardel, C. M., Phillips, J., … Minjarez, M. B. (2015). A randomized controlled trial of Pivotal Response Treatment Group for parents of children with autism. Journal of Child Psychology and Pychiatry, and Allied Disciplines, 56, 884-892.
Harrop, C., Gulsrud, A., Shih, W., Hovsepyan, L., & Kasari, C. (2017). The impact of caregiver-mediated JASPER on child restricted and repetitive behaviors and caregiver responses. Autism Research, 10, 983-992.
Iacono, T., Trembath, D., & Erickson, S. (2016). The role of augmentative and alternative communication for children with autism: Current status and future trends. Neuropsychiatric Disease and Treatment, 12, 2349-2361.
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, 46, 2275-2284.
Jonsson, U., Choque Olsson, N., & Bölte, S. (2016). Can findings from randomized controlled trials of social skills training in autism spectrum disorder be generalized? The neglected dimension of external validity. Autism, 20, 295-305.
Kasari, C., Gulsrud, A., Paparella, T., Hellemann, G., & Berry, K. (2015). Randomized comparative efficacy study of parent-mediated interventions for toddlers with autism. Journal of Consulting and Clinical Psychology, 83, 554-563.
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, 1045-1056.
Kasari, C., Lawton, K., Shih, W., Barker, T. V., Landa, R., Lord, C., … Senturk, D. (2014). Caregiver-mediated intervention for low-resourced preschoolers with autism: An RCT. Pediatrics, 134, e72-e79.
Kuravackel, G. M., Ruble, L. A., Reese, R. J., Ables, A. P., Rodgers, A. D., & Toland, M. D. (2017). COMPASS for hope: Evaluating the effectiveness of a parent training and support program for children with ASD. Journal of Autism and Developmental Disorders, 48, 404-416. https://doi.org/10.1007/s10803-017-3333-8
McConachie, H., Parr, J. R., Glod, M., Hanratty, J., Livingstone, N., Oono, I. P., … Williams, K. (2015). Systematic review of tools to measure outcomes for young children with autism spectrum disorder. Health Technology Assessment, 19, 1-506.
McConkey, R., Truesdale-Kennedy, M., Crawford, H., McGreevy, E., Reavey, M., & Cassidy, A. (2010). Preschoolers with autism spectrum disorders: Evaluating the impact of a home-based intervention to promote their communication. Early Child Development and Care, 180, 299-315.
McStay, R. L., Trembath, D., & Dissanayake, C. (2014). Stress and family quality of life in parents of children with autism spectrum disorder: Parent gender and the double ABCX model. Journal of Autism and Developmental Disorders, 44, 3101-3118.
Moher, D., Liberati, A., Tetzlaff, J., Altman, D. G., & The PRISMA Group (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. PLOS Medicine, 6(7), e1000097. https://doi.org/10.1371/journal.pmed.1000097
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, 23-32.
Nevill, R. E., Lecavalier, L., & Stratis, E. A. (2018). Meta-analysis of parent-mediated interventions for young children with autism spectrum disorder. Autism, 22, 84-98.
Norrelgen, F., Fernell, E., Eriksson, M., Hedvall, A., Persson, C., Sjolin, M., … Kjellmer, L. (2015). Children with autism spectrum disorders who do not develop phrase speech in the preschool years. Autism, 19, 934-943.
Odom, S. L., Boyd, B. A., Hall, L. J., & Hume, K. (2010). Evaluation of comprehensive treatment models for individuals with autism spectrum disorders. Journal of Autism Developmental Disorders, 40, 425-436.
Oono, I. P., Honey, E. J., & McConachie, H. (2013). Parent-mediated early intervention for young children with autism spectrum disorders (ASD). Cochrane Database Systematic Review, 4, CD009774.
Oosterling, I., Visser, J., Swinkels, S., Rommelse, N., Donders, R., Woudenberg, T., … Buitelaar, J. (2010). Randomized controlled trial of the focus parent training for toddlers with autism: 1-year outcome. Journal of Autism and Developmental Disorders, 40, 1447-1458.
Osborne, L. A., McHugh, L., Saunders, J., & Reed, P. (2008). Parenting stress reduces the effectiveness of early teaching interventions for autistic spectrum disorders. Journal of Autism and Developmental Disorders, 38, 1092-1103.
Pajareya, K., & Nopmaneejumruslers, K. (2011). A pilot randomized controlled trial of DIR/Floortime (TM) parent training intervention for pre-school children with autistic spectrum disorders. Autism, 15, 563-577.
Parsons, D., Cordier, R., Vaz, S., & Lee, H. C. (2017). Parent-mediated intervention training delivered remotely for children with autism spectrum disorder living outside of urban areas: Systematic review. Journal of Medical Internet Research, 19, e198.
Pickard, K. E., Wainer, A. L., Bailey, K. M., & Ingersoll, B. R. (2016). A mixed-method evaluation of the feasibility and acceptability of a telehealth-based parent-mediated intervention for children with autism spectrum disorder. Autism, 20, 845-855.
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. Lancet, 388, 2501-2509.
Poslawsky, I. E., Naber, F. B., Bakermans-Kranenburg, M. J., Daalen, E. V., Engeland, H. V., & IJzendoorn, M. H. V. (2015). Video-feedback Intervention to promote positive parenting adapted to Autism (VIPP-AUTI): A randomized controlled trial. Autism, 19, 588-603.
Rahman, A., Divan, G., Hamdani, S. U., Vajaratkar, V., Taylor, C., Leadbitter, K., … Green, J. (2016). Effectiveness of the parent-mediated intervention for children with autism spectrum disorder in south Asia in India and Pakistan (PASS): A randomised controlled trial. Lancet Psychiatry, 3, 128-136.
Ratto, A. B., Anthony, B. J., Pugliese, C., Mendez, R., Safer-Lichtenstein, J., Dudley, K. M., … Anthony, L. G. (2017). Lessons learned: Engaging culturally diverse families in neurodevelopmental disorders intervention research. Autism, 21, 622-634.
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, CD009260.
Robbins, F. R., Dunlap, G., & Plienis, A. J. (1991). Family characteristics, family training, and the progress of young-children with autism. Journal of Early Intervention, 15, 173-184.
Roberts, J., & Williams, K. (2016). Autism Spectrum Disorder: Evidence-based/evidence-informed good practice for supports provided to preschool children, their families and carers. Retrieved from https://www.ndis.gov.au/html/sites/default/files/Early%20Intervention%20for%20Autism%20research%20report.pdf
Rogers, S. J., Estes, A., Lord, C., Vismara, L., Winter, J., Fitzpatrick, A., … Dawson, G. (2012). Effects of a brief Early Start Denver model (ESDM)-based parent intervention on toddlers at risk for autism spectrum disorders: A randomized controlled trial. Journal of the Amerian Academy of Child and Adolescent Psychiatry, 51, 1052-1065.
Rose, V., Trembath, D., Keen, D., & Paynter, J. (2016). The proportion of minimally verbal children with autism spectrum disorder in a community-based early intervention programme. Journal of Intellectual Disability Research, 60, 464-477.
Sanders, M. R., Kirby, J. N., Tellegen, C. L., & Day, J. J. (2014). The triple P-positive parenting program: A systematic review and meta-analysis of a multi-level system of parenting support. Clinical Psychology Review, 34, 337-357.
Schertz, H. H., Odom, S. L., Baggett, K. M., & Sideris, J. H. (2013). Effects of joint attention mediated learning for toddlers with autism spectrum disorders: An initial randomized controlled study. Early Childhood Research Quarterly, 28, 249-258.
Schertz, H. H., Odom, S. L., Baggett, K. M., & Sideris, J. H. (2018). Mediating parent learning to promote social communication for toddlers with autism: Effects from a randomized controlled trial. Journal of Autism and Developmental Disorders, 48, 853-867.
Schreibman, L., Dawson, G., Stahmer, A., Landa, R., Rogers, S., McGee, G., … Halladay, A. (2015). Naturalistic developmental behavioral interventions: Empirically validated treatments for autism spectrum disorder. Journal of Autism and Developmental Disorders, 45, 2411-2428.
Schwichtenberg, A., & Poehlmann, J. (2007). Applied behaviour analysis: Does intervention intensity relate to family stressors and maternal well-being? Journal of Intellectual Disability Research, 51, 598-605.
Shire, S. Y., Goods, K., Shih, W., Distefano, C., Kaiser, A., Wright, C., … Kasari, C. (2015). Parents' adoption of social communication intervention strategies: Families including children with autism spectrum disorder who are minimally verbal. Journal of Autism and Developmental Disorders, 45, 1712-1724.
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, 1737-1747.
Siller, M., Hutman, T., & Sigman, M. (2013). A parent-mediated intervention to increase responsive parental behaviors and child communication in children with ASD: A randomized clinical trial. Journal of Autism and Developmental Disorders, 43, 540-555.
Siller, M., Swanson, M., Gerber, A., Hutman, T., & Sigman, M. (2014). A parent-mediated intervention that targets responsive parental behaviors increases attachment behaviors in children with ASD: Results from a randomized clinical trial. Journal of Autism and Developmental Disorders, 44, 1720-1732.
Solomon, R. M. D., Van Egeren, L. A. P., Mahoney, G. P., Quon Huber, M. S. P., & Zimmerman, P. M. B. A. (2014). PLAY project home consultation intervention program for young children with autism spectrum disorders: A randomized controlled trial. Journal of Developmental and Behavioral Pediatrics, 35, 475-485.
Stadnick, N. A., Stahmer, A., & Brookman-Frazee, L. (2015). Preliminary effectiveness of Project ImPACT: A parent-mediated intervention for children with autism spectrum disorder delivered in a community program. Journal of Autism and Developmental Disorders, 45, 2092-2104.
Stedman, A., Taylor, B., Erard, M., Peura, C., & Siegel, M. (2018). Are children severely affected by Autism Spectrum Disorder underrepresented in treatment studies? An analysis of the literature. Journal of Autism and Developmental Disorders, 49, 1378-1390.
Tager-Flusberg, H., & Kasari, C. (2013). Minimally verbal school-aged children with autism spectrum disorder: The neglected end of the spectrum. Autism Research, 6, 468-478.
Thomas, B. H., Ciliska, D., Dobbins, M., & Micucci, S. (2004). A process for systematically reviewing the literature: Providing the research evidence for public health nursing interventions. Worldviews Evidence Based Nursing, 1, 176-184.
Turner-Brown, L., Hume, K., Boyd, B. A., & Kainz, K. (2016). Preliminary efficacy of family implemented TEACCH for toddlers: Effects on parents and their toddlers with autism spectrum disorder. Journal of Autism and Developmental Disorders, 49, 2685-2698. https://doi.org/10.1007/s10803-016-2812-7
Venker, C. E., McDuffie, A., Weismer, S. E., & Abbeduto, L. (2012). Increasing verbal responsiveness in parents of children with autism: A pilot study. Autism: The International Journal of Research and Practice, 16, 568-585.
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, 2953-2969.
Vivanti, G., Prior, M., Williams, K., & Dissanayake, C. (2014). Predictors of outcomes in autism early intervention: Why don't we know more? Frontiers in Pediatrics, 2, 58.
Wetherby, A. M. P., Guthrie, W. M. S., Woods, J. P., Schatschneider, C. P., Holland, R. D. M. S., Morgan, L. P., & Lord, C. P. (2014). Parent-implemented social intervention for toddlers with autism: An rct. Pediatrics, 134, 1084-1093.
Whitehouse, A. J. O., Granich, J., Alvares, G., Busacca, M., Cooper, M. N., Dass, A., … Anderson, A. (2017). A randomised controlled trial of an iPad-based application to complement early behavioural intervention in Autism Spectrum Disorder. Journal of Child Psychology and Psychiatry, 58, 1042-1052.
Whittingham, K., Sofronoff, K., Sheffield, J., & Sanders, M. R. (2014). Stepping stones triple P: An RCT of a parenting program with parents of a child diagnosed with an autism spectrum disorder (vol 37, pg 469, 2009). Journal of Abnormal Child Psychology, 42, 1249-1249.
Woo, C. C., Donnelly, J. H., Steinberg-Epstein, R., & Leon, M. (2015). Environmental enrichment as a therapy for autism: A clinical trial replication and extension. Behavioral Neuroscience, 129, 412-422.
Zhou, B. R., Xu, Q., Li, H. P., Zhang, Y., Wang, Y., Rogers, S. J., & Xu, X. (2018). Effects of parent-implemented early start Denver model intervention on Chinese toddlers with autism spectrum disorder: A non-randomized controlled trial. Autism Research, 11, 654-666.