Skip to main content
Log in

Randomized Controlled Trial on an Online Training to Support Caregivers of Young Children with Intellectual and Developmental Disability managing Problem Behaviors at Home

  • Original Paper
  • Published:
Journal of Child and Family Studies Aims and scope Submit manuscript

Abstract

In countries with public health insurance, caregivers may face long wait times to access services for children with intellectual and developmental disability. This limited access may compromise the adaptation of the child and their family, especially when specialized services (e.g., early intensive behavioral interventions) are needed to manage problem behaviors. Further, longer wait times can contribute to parental stress and increase problem behaviors in children. Therefore, the purpose of the current study was to evaluate the effectiveness of an online parent training for managing problem behaviors for families awaiting specialized services. Twenty-nine families of children with intellectual and developmental disability participated in a randomized controlled trial with random assignment to a waitlist control (i.e., sixteen families in the experimental group and thirteen in the waitlist group). Our results demonstrated that the online training led to reductions in the frequency of problem behaviors and parenting stress while improving caregivers’ self-efficacy. This study provides preliminary evidence for the utility of an online training to support caregivers of young children with intellectual and developmental disability.

Highlights

  • This online training can support caregivers in managing problem behaviors while awaiting services for their child.

  • The results demonstrated that the training increased caregivers’ sense of self-efficacy in managing problem behaviors.

  • A significant decrease in parental stress was observed in caregivers who completed the online training.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Fig. 1
Fig. 2

Similar content being viewed by others

References

  • Abouzeid, N., Rivard, M., Mello, C., Mestari, Z., Boulé, M., & Guay, C. (2020). Parent coaching intervention program based on the Early Start Denver Model for children with autism spectrum disorder: Feasibility and acceptability study. Research in Developmental Disabilities, 105, 103747. https://doi.org/10.1016/j.ridd.2020.103747.

    Article  PubMed  Google Scholar 

  • Argumedes, A., Lanovaz, M. J., & Larivée, S. (2018). Brief report: Impact of problem behavior on parenting stress in mothers and fathers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 48, 2585–2589. https://doi.org/10.1007/s10803-018-3513-1.

    Article  PubMed  Google Scholar 

  • Austin, J., Manning-Courtney, P., Johnson, M. L., Weber, R., Johnson, H., Murray, D., & Murray, M. (2016). Improving access to care at autism treatment centers: a system analysis approach. Pediatrics, 137(Supplement 2), S149–S157. https://doi.org/10.1542/peds.2015-2851M.

    Article  PubMed  Google Scholar 

  • Bailey, T., Totsika, V., Hastings, R. P., Hatton, C., & Emerson, E. (2019). Developmental trajectories of behaviour problems and prosocial behaviours of children with intellectual disabilities in a population-based cohort. Journal of Child Psychology and Psychiatry, 60(11), 1210–1218. https://doi.org/10.1111/jcpp.13080.

    Article  PubMed  Google Scholar 

  • Baker, B. L., Blacher, J., Crnic, K. A., & Edelbrock, C. (2002). Problem behaviors and parenting stress in families of three-year-old children with and without developmental delays. Journal Information, 107(6). https://doi.org/10.1352/0895-8017(2002)107<0433:BPAPSI>2.0.CO;2.

  • Baker-Ericzén, M. J., Brookman-Frazee, L., & Stahmer, A. (2005). Stress Levels and Adaptability in Parents of Toddlers with and without Autism Spectrum Disorders. Research and Practice for Persons with Severe Disabilities, 30(4), 194–204. https://doi.org/10.2511/rpsd.30.4.194.

    Article  Google Scholar 

  • Bearss, K., Johnson, C., Smith, T., Lecavalier, L., Swiezy, N., Aman, M., McAdam, D. B., Butter, E., Stillitano, C., Minshawi, N., Sukhodolsky, D. G., Mruzek, D. W., Turner, K., Neal, T., Hallett, V., Mulick, J. A., Green, B., Handen, B., Deng, Y., & Scahill, L. (2015). Effect of parent training vs parent education on behavioral problems in children with autism spectrum disorder: A randomized clinical trial. JAMA, 313(15), 1524–1533. https://doi.org/10.1001/jama.2015.3150.

    Article  PubMed  PubMed Central  Google Scholar 

  • Beller, E. M., Gebski, V., & Keech, A. C. (2002). Randomisation in clinical trials. Medical Journal of Australia, 177, 565–567.

    Article  PubMed  Google Scholar 

  • Bigras, M., LaFreniere, P. J., & Abidin, R. R. (1996). Indice de stress parental: manuel francophone en complément à l'édition américaine [Parental Stress Index: French-language manual to supplement the American edition]. Toronto, Canada: Multi-Health Systems.

    Google Scholar 

  • Blacher, J., Neece, C., & Paczkowski, E. (2005). Families and intellectual disability. Current Opinion in Psychiatry, 18(5), 507–513. https://doi.org/10.1097/01.yco.0000179488.92885.e8.

    Article  PubMed  Google Scholar 

  • Carter, S. L. (2007). Review of a recent treatment acceptability research. Education and Training in Developmental Disabilities, 42, 301–316.

    Google Scholar 

  • Chadwick, O., Walker, N., Bernard, S., & Taylor, E. (2000). Factors affecting the risk of behaviour problems in children with severe intellectual disability. Journal of Intellectual Disability Research, 44(2), 108–123. https://doi.org/10.1046/j.1365-2788.2000.00255.x.

    Article  PubMed  Google Scholar 

  • Crane, L., Chester, J. W., Goddard, L., Henry, L. A., & Hill, E. (2016). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism, 20, 153–162. https://doi.org/10.1177/1362361315573636.

    Article  PubMed  Google Scholar 

  • Dadds, M. R., Sicouri, G., Piotrowska, P. J., Collins, D. A., Hawes, D. J., Moul, C., & Tully, L. A. (2019). Keeping parents involved: predicting attrition in a self-directed, online program for childhood conduct problems. Journal of Clinical Child & Adolescent Psychology, 48(6), 881–893. https://doi.org/10.1080/15374416.2018.1485109.

    Article  Google Scholar 

  • Dai, Y. G., Brennan, L., Como, A., Hughes-Lika, J., Dumont-Mathieu, T., Carcani-Rathwell, I., Minxhozi, O., Aliaj, B., & Fein, D. A. (2018). A video parent-training program for families of children with autism spectrum disorder in Albania. Research in Autism Spectrum Disorders, 56, 36–49. https://doi.org/10.1016/j.rasd.2018.08.008.

    Article  PubMed  PubMed Central  Google Scholar 

  • Dunlap, G., Strain, P., Lee, J. K., Joseph, J., & Leech, N. (2018). A randomized controlled evaluation of Prevent-Teach-Reinforce for young children. Topics in Early Childhood Special Education, 37(4), 195–205. https://doi.org/10.1177/0271121417724874.

    Article  Google Scholar 

  • Durand, V. M., Hieneman, M., Clarke, S., Wang, M., & Rinaldi, M. L. (2013). Positive family intervention for severe challenging behavior I: A multisite randomized clinical trial. Journal of Positive Behavior Interventions, 15(3), 133–143. https://doi.org/10.1177/1098300712458324.

    Article  Google Scholar 

  • Einfeld, S L., Tonge, B J., & Clarke, K S. (2013). Prevention and early intervention for behaviour problems in children with developmental disabilities. Current Opinion in Psychiatry, 26(3), 263–269. https://doi.org/10.1097/YCO.0b013e32835fd760.

    Article  PubMed  Google Scholar 

  • Eisenhower, A., Baker, B. L., & Blacher, J. (2005). Preschool children with intellectual disability: syndrome specificity, behaviour problems, and maternal well‐being. Journal of Intellectual Disability Research, 49(9), 657–671. https://doi.org/10.1111/j.1365-2788.2005.00699.x.

    Article  PubMed  Google Scholar 

  • Emerson, E., Einfeld, S., & Stancliffe, R. J. (2010). The mental health of young Australian children with intellectual disabilities or borderline intellectual functioning. Social Psychiatry and Psychiatric Epidemiology, 45, 9 https://doi.org/10.1007/s00127-009-0100-y.

    Article  Google Scholar 

  • Gibaud-Wallston, J., & Wandersman, L. P. (1978). Development and utility of the Parenting Sense of Competence Scale. Toronto, ON: Paper presented at the annual meeting of the American Psychological Association.

    Google Scholar 

  • Gormley, L., Healy, O., Doherty, A., O’Regan, D., & Grey, I. (2020). Staff Training in Intellectual and Developmental Disability Settings: a Scoping Review. Journal of Developmental and Physical Disabilities, 32(2), 187–212. https://doi.org/10.1007/s10882-019-09683-3.

    Article  Google Scholar 

  • Grenier-Martin, J., & Rivard, M. (2020). Perception des parents d’enfants ayant un retard global de développement au Québec concernant la trajectoire de services. Revue de psychoeducation, 49(1), 69–98.

    Article  Google Scholar 

  • Grenier-Martin, J., & Rivard, M. (2021). Managing challenging behaviors at home without services: the perspective of parents having young children with intellectual and developmental disability. Journal of Developmental and Physical Disabilities, 34(2), 373–397. https://doi.org/10.1007/s10882-021-09804-x.

    Article  Google Scholar 

  • Griffith, G. M., & Hastings, R. P. (2014). ‘He’s hard work, but he’s worth it’. The Experience of Caregivers of Individuals with Intellectual Disabilities and Challenging Behaviour: A Meta-Synthesis of Qualitative Research. Journal of Applied Research in Intellectual Disabilities, 27, 401–419. https://doi.org/10.1111/jar.12073.

    Article  PubMed  Google Scholar 

  • Guralnick, M. J. (2017). Early intervention for children with intellectual disabilities: An update. Journal of Applied Research in Intellectual Disabilities, 30, 211–229. https://doi.org/10.1111/jar.12233.

    Article  PubMed  Google Scholar 

  • Harrison, P. L., & Oakland, T. (2003). Adaptive Behavior Assessment System–Second Edition: Wiley Online Library.

  • Hastings, R. P. (2002). Parental stress and behaviour problems of children with developmental disability. Journal of Intellectual & Developmental Disability, 27(3), 149–160. https://doi.org/10.1080/1366825021000008657.

    Article  Google Scholar 

  • Hastings, R. P., Beck, A., & Hill, C. (2005). Positive contributions made by children with an intellectual disability in the family: Mothers’and fathers’perceptions. Journal of Intellectual Disabilities, 9(2), 155–165. https://doi.org/10.1177/1744629505053930.

    Article  PubMed  Google Scholar 

  • Head, L. S., & Abbeduto, L. (2007). Recognizing the role of parents in developmental outcomes: A systems approach to evaluating the child with developmental disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 13, 293–301. https://doi.org/10.1002/mrdd.20169.

    Article  PubMed  Google Scholar 

  • Heitzman-Powell, L. S., Buzhardt, J., Rusinko, L. C., & Miller, T. M. (2014). Formative evaluation of an aba outreach training program for parents of children with autism in remote areas. Focus on Autism and Other Developmental Disabilities, 29, 23–38. https://doi.org/10.1177/1088357613504992.

    Article  Google Scholar 

  • Hinton, S., Sheffield, J., Sanders, M. S., & Sofronoff, K. (2017). A randomized controlled trial of a telehealth parenting intervention: A mixed-disability trial. Research in Developmental Disabilities, 65, 74–85. https://doi.org/10.1016/j.ridd.2017.04.005.

    Article  PubMed  Google Scholar 

  • Ho, H., Perry, A., & Koudys, J. (2021). A systematic review of behaviour analytic interventions for young children with intellectual disabilities. Journal of Intellectual Disability Research, 65(1), 11–31. https://doi.org/10.1111/jir.12780.

    Article  PubMed  Google Scholar 

  • Hudson, A. M., Matthews, J. M., Gavidia-Payne, S. T., Cameron, C. A., Mildon, R. L., Radler, G. A., & Nankervis, K. L. (2003). Evaluation of an intervention system for parents of children with intellectual disability and problem behavior. Journal of Intellectual Disability Research, 47, 238–249. https://doi.org/10.1046/j.1365-2788.2003.00486.x.

    Article  PubMed  Google Scholar 

  • Huus, K., Olsson, L. M., Elgmark Andersson, E., Granlund, M., & Augustine, L. (2017). Perceived needs among parents of children with a mild intellectual disability in Sweden. Scandinavian Journal of Disability Research, 19(4), 307–317. https://doi.org/10.1080/15017419.2016.1167773.

    Article  Google Scholar 

  • Johnson, N., Frenn, M., Feetham, S., & Simpson, P. (2011). Autism spectrum disorder: Parenting stress, family functioning and health-related quality of life. Families, Systems, & Health, 29(3), 232–252. https://doi.org/10.1037/a0025341.

    Article  Google Scholar 

  • Johnston, C., & Mash, E. J. (1989). A measure of parenting satisfaction and efficacity. Journal of Clinical Child Psychology, 18(2), 8 https://doi.org/10.1207/s15374424jccp1802_8.

    Article  Google Scholar 

  • Katkić, L. O., Morović, M. L., & Kovačić, E. (2017). Parenting stress and a sense of competence in mothers of children with and without developmental disabilities. Hrvatska Revija za Rehabilitacijska Istraživanja, 53(Suppl), 63–76. https://hrcak.srce.hr/193742.

    Google Scholar 

  • Kurtz, P. F., Leoni, M., & Hagopian, L. P. (2020). Behavioral approaches to assessment and early intervention for severe problem behavior in intellectual and developmental disabilities. Pediatric Clinics of North America, 67(3), 499–511. https://doi.org/10.1016/j.pcl.2020.02.005.

    Article  PubMed  PubMed Central  Google Scholar 

  • Leaf, R. B., & McEachin, J. (1999). A work in progress: Behavior management strategies and a curriculum for intensive behavioral treatment of autism. New York, NY: DRL Books.

    Google Scholar 

  • Lee, J. D., Hacker, R. E., Meadan, H., & Haidar, B. S. (2022). Challenging Behaviors Online Modules for Parents of Young Children with Disabilities: A Pilot Feasibility Study. Education and Treatment of Children. Advance online publication. https://doi.org/10.1007/s43494-021-00067-x

  • Lindsey, R. A., Saltness, S. R., Lau, A. F., & Barry, T. D. (2020) A longitudinal examination of interactions between autism symptom severity and parenting behaviors in predicting change in child problem behaviors. Research in Autism Spectrum Disorders, 70. https://doi.org/10.1016/j.rasd.2019.101469.

  • Lovaas, O. I., Ackerman, A., Alexander, D., Firestone, P., Perkins, J., & Young, D. (1981). Teaching developmentally disabled children: The ME book. Austin, TX: Pro-Ed.

    Google Scholar 

  • Machalicek, W., Lang, R., & Raulston, T. J. (2015). Training parents of children with intellectual disabilities: Trends, issues, and future directions. Current Developmental Disorders Reports, 2(2), 110–118. https://doi.org/10.1007/s40474-015-0048-4.

    Article  Google Scholar 

  • Marleau, B., Lanovaz, M. J., Gendron, A., Higbee, T. S., & Morin, D. (2019). Using interactive web training to teach parents to select function-based interventions for challenging behaviour: A preliminary study. Journal of Intellectual & Developmental Disability, 44(4), 492–496. https://doi.org/10.3109/13668250.2018.1464281.

    Article  Google Scholar 

  • Maurice, C., Green, G., & Luce, S. C. (1996). Behavioral intervention for young children with autism: A manual for parents and professionals. Austin, TX: Pro-Ed.

    Google Scholar 

  • McClintock, K., Hall, S., & Oliver, C. (2003). Risk markers associated with challenging behaviours in people with intellectual disabilities: a meta-analytic study. Journal of Intellectual Disability Research, 47(6), 405–416. https://doi.org/10.1046/j.1365-2788.2003.00517.x.

    Article  PubMed  Google Scholar 

  • McKinsey & Company. (2014). Une stratégie ambitieuse pour aider les personnes ayant un trouble du spectre de l’autisme ou une déficience intellectuelle. Fondation Miriam.

  • National Institute for Health and Care Excellence (2016). Mental health problems in people with learning disabilities: prevention, assessment, and management. NICE Guideline NG54.

  • Neece, C. L., Green, S. A., & Baker, B. L. (2012). Parenting Stress and Child Behavior Problems: A Transactional Relationship Across Time. American Journal on Intellectual and Developmental Disabilities, 117(1), 48–66. https://doi.org/10.1352/1944-7558-117.1.48.

    Article  PubMed  PubMed Central  Google Scholar 

  • Nieuwboer, C. C., Fukkink, R. G., & Hermanns, J. M. A. (2013). Online programs as tools to improve parenting: A meta-analytic review. Children and Youth Services Review, 35, 1823–1829. https://doi.org/10.1016/j.childyouth.2013.08.008.

    Article  Google Scholar 

  • Pennefather, J., Hieneman, M., Raulston, T. J., & Caraway, N. (2018). Evaluation of an online training program to improve family routines, parental well-being, and the behavior of children with autism. Research in Autism Spectrum Disorders, 54, 21–26. https://doi.org/10.1016/j.rasd.2018.06.006.

    Article  Google Scholar 

  • Penner, M., Rayar, M., Bashir, N., Roberts, S. W., Hancock-Howard, R. L., & Coyte, P. C. (2015). Cost-effectiveness analysis comparing pre-diagnosis autism spectrum disorder (ASD)-targeted intervention with Ontario’s autism intervention program. Journal of Autism and Developmental Disorders, 45, 2833–2847. https://doi.org/10.1007/s10803-015-2447-0.

    Article  PubMed  Google Scholar 

  • Petrenko, C. L. (2013). A Review of Intervention Programs to Prevent and Treat Behavioral Problems in Young Children with Developmental Disabilities. Journal on Developmental and Physical Disabilities, 25, 651–679. https://doi.org/10.1007/s10882-013-9336-2.

    Article  Google Scholar 

  • Prinz, R. J., Metzler, C. W., Sanders, M. R., Rusby, J. C., & Cai, C. (2021). Online‐delivered parenting intervention for young children with disruptive behavior problems: A noninferiority trial focused on child and parent outcomes. Journal of Child Psychology and Psychiatry, 63(2), 199–209. https://doi.org/10.1111/jcpp.13426.

    Article  PubMed  Google Scholar 

  • Rivard, M., Terroux, A., Parent-Boursier, C., & Mercier, C. (2014). Determinants of stress in parents of children with autism spectrum disorders. Journal Autism and Developpmental Disorders, 44(7), 1609–1620. https://doi.org/10.1007/s10803-013-2028-z.

    Article  Google Scholar 

  • Rivard, M., Mercier, C., Morin, M., & Lépine, A. (2015). Le point de vue de parents d’enfants présentant un trouble du spectre de l’autisme en regard d’un programme public d’intervention comportementale. Revue de psychoéducation, 44(2), 289–315. https://doi.org/10.7202/1039257ar.

    Article  Google Scholar 

  • Rivard, M., Mercier, C., Mestari, Z., Terroux, A., & Mello, C., & Begin, J. (2017). Psychometric Properties of the Beach Center Family Quality of Life in French-Speaking Families With a Preschool-Aged Child Diagnosed With Autism Spectrum Disorder. American Journal on Intellectual and Developmental Disabilities, 122(5), 439–452.

    Article  PubMed  Google Scholar 

  • Rojahn, J., Matson, J. L., Lott, D., Esbensen, A. J., & Smalls, Y. (2001). The Problem behaviors Inventory: An instrument for the assessment of self-injury, stereotyped behavior and aggression/destruction in individuals with developmental disabilities. Journal of Autism and Developmental Disorders, 31, 577–588. https://doi.org/10.1023/A:1013299028321.

    Article  PubMed  Google Scholar 

  • Secco, M. L., Askin, D., Yu, C. T., Garinger, J., Mulaire-Cloutier, C., Scharf, L., Schwartzman, L., Konyk, D., & Feldman, M. (2006). Factors affecting parenting stress among biologically vulnerable toddlers. Issues in Comprehensive Pediatric Nursing, 29(3), 131–156. https://doi.org/10.1080/01460860600846867.

    Article  Google Scholar 

  • 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, 686–692. https://doi.org/10.1002/jaba.305.

    Article  PubMed  Google Scholar 

  • Tellegen, C. L., & Sanders, M. R. (2013). Stepping Stones Triple P–Positive Parenting Program for children with disability: A systematic review and meta-analysis. Research in Developmental Disabilities, 34, 1556–1571.

    Article  PubMed  Google Scholar 

  • Terrisse, B. & Trudelle, D. (1988). Questionnaire d’auto-évaluation de la compétence éducative parentale (Q.A.E.C.E.P.), Adaptation et traduction du Parenting Sense of Competence. Université du Québec à Montréal, Groupe de recherche en adaptation scolaire et sociale (GREASS).

  • Totsika, V., Hastings, R. P., Emerson, E., Lancaster, G. A., & Berridge, D. M. (2011). A population-based investigation of behavioural and emotional problems and maternal mental health: associations with autism spectrum disorder and intellectual disability. Journal of Child Psychology and Psychiatry, 52, 91–99. https://doi.org/10.1111/j.1469-7610.2010.02295.x.

    Article  PubMed  Google Scholar 

  • Trudelle, D., & Montambault, E. (1994). Le sentiment de compétence parentale chez des parents d’enfants d’âge préscolaire. Service social, 43(2), 47 https://doi.org/10.7202/706656ar.

    Article  Google Scholar 

  • Trudelle, D. (1991). Sentiment de compétence, attitudes et pratiques éducatives chez des parents québécois d’enfants d’âge préscolaire en fonction de leurs caractéristiques socio-économiques. Unpublished PhD thesis. Université du Québec à Rimouski.

  • Turgeon, S., Lanovaz, M. J. & Dufour, M. (2020) Effects of an Interactive Web Training to Support Parents in Reducing Problem behaviors in Children with Autism. Behavior Modification, 1-28. https://doi.org/10.1177/0145445520915671.

  • Wodehouse, G., & McGill, P. (2009). Support for family carers of children and young people with developmental disabilities and problem behavior: what stops it being helpful? Journal of Intellectual Disability Research, 53(7), 644–659. https://doi.org/10.1111/j.1365-2788.2009.01163.x.

    Article  PubMed  Google Scholar 

Download references

Acknowledgements

This paper was written in partial fulfillment of the requirements of the Ph.D. degree in Psychology at the Université du Québec à Montréal by the first author. This study was supported in part by scholarships awarded to the first author by the Consortium national de recherche en intégration sociale (CNRIS) and the Fonds de recherche du Québec – Société et culture.

Funding

This study was funded partially by grants from the Office des personnes handicapées du Québec and the CNRIS to the fourth author.

Author information

Authors and Affiliations

Authors

Corresponding authors

Correspondence to J. Grenier-Martin or M. Rivard.

Ethics declarations

Conflict of Interest

The authors declare no competing interests.

Additional information

Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Springer Nature or its licensor holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Grenier-Martin, J., Rivard, M., Patel, S. et al. Randomized Controlled Trial on an Online Training to Support Caregivers of Young Children with Intellectual and Developmental Disability managing Problem Behaviors at Home. J Child Fam Stud 31, 3485–3497 (2022). https://doi.org/10.1007/s10826-022-02440-9

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10826-022-02440-9

Keywords

Navigation