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Managing Challenging Behaviors at Home without Services: the Perspective of Parents Having Young Children with Intellectual and Developmental Disability

Abstract

Families of young children with intellectual and developmental disabilities (IDD) experience challenges that may be exacerbated by challenging behavior (CB) and a lack of specialized support services. While waiting for services, families must implement strategies on their own, while taking arduous steps to access supports to eventually meet their needs. Through an online survey, 60 families reported on their experiences managing CBs in the absence of specialized services, including strategies adopted, challenges encountered in implementing interventions, perceptions regarding their efficacy, steps taken to access services, and needs in terms of specialized services and external supports. More than half reported feeling inadequate to the task. These families identified needs in relation to both technical and psychological support. We suggest options that could be offered to families waiting for services to strengthen the sense of parental competence, help to better manage CBs with parent-mediated interventions, and support families’ psychological well-being.

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References

  1. Aman, M. G., Tassé, M. J., Rojahn, J., & Hammer, D. (1996). The Nisonger CBRF: A child behavior rating form for children with developmental disabilities. Research in Developmental Disabilities, 17(1), 41–57. https://doi.org/10.1016/0891-4222(95)00039-9.

  2. Argumedes, A., Lanovaz, M. J., & Larivée, S. (2018). Brief report: Impact of challenging 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 

  3. 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 

  4. Baker, B. L., Blacher, J., Crnic, K. A., & Edelbrock, C. (2002). Behavior problems and parenting stress in families of three-year-old children with and without developmental delays. American Journal of Mental Retardation, 107(6), 433–444. https://doi.org/10.1352/0895-8017(2002)107<0433:BPAPSI>2.0.CO;2.

  5. 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.

  6. Bandura, A. (1997). Self-efficacy: The exercise of control. W. H. Freeman.

    Google Scholar 

  7. 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  Google Scholar 

  8. 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 

  9. Brookman-Frazee, L., Baker-Ericzén, M., Stadnick, N., & Taylor, R. (2012). Parent perspectives on community mental health services for children with autism spectrum disorders. Journal of Child and Family Studies, 21(4), 533–544. https://doi.org/10.1007/s10826-011-9506-8.

    Article  Google Scholar 

  10. Carr, E. G., Dunlap, G., Horner, R. H., Koegel, R. L., Turnbull, A. P., Sailor, W., et al. (2002). Positive behavior support: Evolution of an applied science. Journal of Positive Behavior Interventions, 4, 4–16. https://doi.org/10.1177/109830070200400102.

    Article  Google Scholar 

  11. Carr, E. G., & Durand, V. M. (1985). Reducing behavior problems through functional communication training. Journal of Applied Behavior Analysis, 18, 111–126.

    Article  Google Scholar 

  12. 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 

  13. Dunlap, G., Iovannone, R., Wilson, K. J., Kincaid, D. K., & Strain, P. (2010). Prevent-teach- reinforce: A standardized model of school-based behavioral intervention. Journal of Positive Behavior Interventions, 12(1), 9–22. https://doi.org/10.1177/1098300708330880.

    Article  Google Scholar 

  14. 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 

  15. Einfeld, S. L., & Tonge, B. J. (1995). The developmental behavior checklist: The development and validation of an instrument to assess behavioral and emotional disturbance in children and adolescents with mental retardation. Journal of Autism and Developmental Disorders, 25(2), 81–104. https://doi.org/10.1007/BF02178498.

    Article  PubMed  Google Scholar 

  16. Eisenhower, A. S., 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 

  17. Emerson, E., Einfeld, S., & Stancliffe, R. J. (2010). The mental health of young children with intellectual disabilities or borderline intellectual functioning. Social Psychiatry and Epidemiology, 45, 579–587. https://doi.org/10.1007/s00127-009-0100-y.

    Article  Google Scholar 

  18. Emerson, E., Robertson, J., & Wood, J. (2005). Emotional and behavioural needs of children and adolescents with intellectual disabilities in an urban conurbation. Journal of Intellectual Disability Research, 49(1), 16–24. https://doi.org/10.1111/j.1365-2788.2005.00658.x.

    Article  PubMed  Google Scholar 

  19. 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.

  20. 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(5), 401–419. https://doi.org/10.1111/jar.12073.

    Article  PubMed  Google Scholar 

  21. Griffith, G. M., Hastings, R. P., Nash, S., Petalas, M., Oliver, C., Howlin, P., Moss, J., Petty, J., & Tunnicliffe, P. (2011). “You have to sit and explain it all, and explain yourself.” mothers’ experiences of support services for their offspring with a rare genetic intellectual disability syndrome. Journal of Genetic Counseling, 20(2), 165–177. https://doi.org/10.1007/s10897-010-9339-4.

    Article  PubMed  Google Scholar 

  22. Grindle, C. F., Kovshoff, H., Hastings, R. P., & Remington, B. (2009). Parents’ experiences of home-based applied behavior analysis programs for young children with autism. Journal of Autism and Developmental Disorders, 39, 42–56. https://doi.org/10.1007/s10803-008-0597-z.

    Article  PubMed  Google Scholar 

  23. 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 

  24. 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(1), 23–38. https://doi.org/10.1177/1088357613504992.

    Article  Google Scholar 

  25. Institut de la statistique du Québec (2018) Le Québec chiffres en main. Gouvernement du Québec. 77 p.

  26. Jack, D., & Jack, J. (2017). A family's battle to understand "challenging behaviour". Tizard Learning Disability Review., 22(2). https://doi.org/10.1108/TLDR-09-2016-0025.

  27. 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 

  28. 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

  29. L’Écuyer, R. (1990). Méthodologie de l’analyse développementale de contenu. Méthode GPS et concept de soi. Presses de l’Université du Québec.

  30. Lee, L. C., Harrington, R. A., Louie, B. B., & Newschaffer, C. J. (2008). Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38(6), 1147–1160. https://doi.org/10.1007/s10803-007-0491-0.

    Article  PubMed  Google Scholar 

  31. Lombard, M., Snyder-Duch, J., & Bracken, C. C. (2010). Practical resources for assessing and reporting intercoder reliability in content analysis research projects.

  32. Machalicek, W., Lequia, J., Pinkelman, S., Knowles, C., Raulston, T., Davis, T., et al. (2016). Behavioral telehealth consultation with families of children with autism spectrum disorder. Behavioral Interventions, 31(3), 223–250. https://doi.org/10.1002/bin.1450.

    Article  Google Scholar 

  33. Matson, J. L., Fodstad, J. C., Mahan, S., & Rojahn, J. (2010). Cut-offs, norms and patterns of problem behaviours in children with developmental disabilities on the baby and infant screen for children with aUtIsm traits (BISCUIT-part 3). Developmental Neurorehabilitation, 13(1), 3–9. https://doi.org/10.3109/17518420903074887.

    Article  PubMed  Google Scholar 

  34. 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 

  35. 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 

  36. McConachie, H., & Diggle, T. (2007). Parent implemented early intervention for young children with autism spectrum disorder: A systematic review. Journal of Evaluation in Clinical Practice, 13(1), 120–129. https://doi.org/10.1111/j.1365-2753.2006.00674.x.

    Article  PubMed  Google Scholar 

  37. McGill, P., Papachristoforou, E., & Cooper, V. (2006). Support for family carers of children and young people with developmental disabilities and challenging behaviour. Child: Care Health, and Development, 32(2), 159–165. https://doi.org/10.1111/j.1365-2214.2006.00600.x.

    Article  Google Scholar 

  38. McIntyre, L. L. (2008). Adapting Webster-Stratton’s incredible years parent training for children with developmental delay: Findings from a treatment group only study. Journal of Intellectual Disability Research, 52(12), 1176–1192. https://doi.org/10.1111/j.1365-2788.2008.01108.x.

    Article  PubMed  Google Scholar 

  39. McKinsey & Company (2014). A bold strategy for autism spectrum disorder and intellectual disability. Miriam Foundation. https://www.miriamfoundation.ca/DATA/TEXTEDOC/141020-PDF-McKinsey-rollout-ENGLISH.pdf. Accessed 08 Dec 2018.

  40. Ministère de la Santé et des Services sociaux. (2003). Un geste porteur d’avenir: Des services aux personnes présentant un trouble envahissant du développement, à leurs familles et à leurs proches. https://publications.msss.gouv.qc.ca/msss/fichiers/2002/02-820-01.pdf. Accessed 17 May 2015.

  41. Ministère de la Santé et des Services sociaux. (2017). Des actions structurantes pour les personnes et leur famille: Plan d'action sur le trouble du spectre de l'autisme 2017–2022. http://publications.msss.gouv.qc.ca/msss/fichiers/2016/16-824-06W.pdf. Accessed 15 Jan 2020.

  42. Patton, M. Q. (2002). Qualitative research & evaluation methods (3rd ed.). Sage Publications.

    Google Scholar 

  43. 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 

  44. Picard, I. (2012). Enquête sur les services reçus et les besoins de parents d’une personne présentant une déficience intellectuelle et création d’un programme de soutien [Unpublished doctoral dissertation]. Université du Québec à Montréal.

  45. Protecteur du citoyen (2015). L’accès, la continuité et la complémentarité des services pour les jeunes (0–18 ans) présentant une déficience intellectuelle ou un trouble du spectre de l’autisme. https://protecteurducitoyen.qc.ca/sites/default/files/pdf/communiques/2015-03-24_autisme-deficience-intellectuelle.pdf. Accessed 03 Mar 2020.

  46. 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

  47. 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

  48. Rivard, M., Morin, M., Morin, D., Bolduc, M., & Mercier, C. (2018). Évaluation de l’implantation de la validité sociale d’un modèle de centre d’évaluation diagnostique en trouble du spectre de l’autisme, déficience intellectuelle et retards de développement. In M. Lapalme, A.-M. Tougas et M.-J. Letarte (dir.), Recherches qualitatives et quantitatives en sciences humaines et sociales (p. 19–45). Éditions JFD.

  49. Roberts, D., & Pickering, N. (2010). Parent training programme for autism spectrum disorders: An evaluation. Community Practitioner, 83(10), 27–30.

    PubMed  Google Scholar 

  50. Rojahn, J., Matson, J. L., Lott, D., Esbensen, A. J., & Smalls, Y. (2001). The behavior problems 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 

  51. Roth, M. E., Gillis, J. M., & DiGennaro Reed, F. D. (2014). A meta-analysis of behavioral interventions for adolescents and adults with autism spectrum disorders. Journal of Behavioral Education, 23, 258–286. https://doi.org/10.1007/s10864-013-9189-x.

    Article  Google Scholar 

  52. Sailor, W., Dunlap, G. E., Sugai, G., & Horner, R. H. (2009). Handbook of positive behavior support. Springer.

  53. 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 

  54. Simplican, S. C. (2019). Behaviors that challenge disability studies. Disability & Society, 34(9–10), 1379–1398. https://doi.org/10.1080/09687599.2018.1552119.

    Article  Google Scholar 

  55. Simó-Pinatella, D., Mumbardó-Adam, C., Montenegro-Montenegro, E., Cortina, A., Mas, J. M., Baqués, N., et al. (2017). Prevalence and risk markers of challenging behavior among children with disabilities. Advances in neurodevelopmental disorders, 1, 158–167. https://doi.org/10.1007/s41252-017-0022-8.

  56. Simó-Pinatella, D., Mumbardó-Adam, C., Alomar-Kurz, E., Sugai, G., & Simonsen, B. (2019) Prevalence of challenging behaviors exhibited by children with disabilities: Mapping the literature. Journal of behavioral education, 28, 323–343. https://doi.org/10.1007/s10864-019-09326-9.

  57. 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. https://doi.org/10.1002/jaba.305.

    Article  PubMed  Google Scholar 

  58. Tonge, B., Brereton, A., Kiomall, M., Mackinnon, A., King, N., & Rinehart, N. (2006). Effects on parental mental health of an education and skills training program for parents of young children with autism: A randomized controlled trial. Journal of the American Academy of Child & Adolescent Psychiatry, 45(5), 561–569. https://doi.org/10.1097/01.chi.0000205701.48324.26.

    Article  Google Scholar 

  59. 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(1), 91–99. https://doi.org/10.1111/j.1469-7610.2010.02295.x.

    Article  PubMed  Google Scholar 

  60. Turgeon, S., Lanovaz, M. J., & Dufour, M. (2020). Effects of an interactive web training to support parents in reducing challenging behaviors in children with autism. Behavior Modification, 1–28. https://doi.org/10.1177/0145445520915671.

  61. Turnbull, A. A., Turnbull, H. R., Erwin, E. J., Soodak, L. C., & Shogren, K. A. (2015). Families, professionals, and exceptionality: Positive outcomes through partnerships and trust (7th ed.). Pearson.

  62. Wodehouse, G., & McGill, P. (2009). Support for family carers of children and young people with developmental disabilities and challenging 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 

  63. Wong, C., Odom, S. L., Hume, K. A., Cox, A. W., Fettig, A., Kucharczyk, S., Brock, M. E., Plavnick, J. B., Fleury, V. P., & 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), 1951–1966. https://doi.org/10.1007/s10803-014-2351-z.

    Article  PubMed  Google Scholar 

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Correspondence to Mélina Rivard.

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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.

Appendix

Appendix

Questions asked to the parents for the challenging behaviors section of the survey.

  1. 1.

    Challenging behaviors

  • Table listing challenging behaviors exhibited by the child and asking the frequency of the behaviors

  • Are there other behaviors that your child exhibits that are problematic and that have not been mentioned in the table above?

    • If so, which one(s)?

  1. 2.

    Seeking help

  • Have you sought help for behavioral or emotional problems in your child?

  • With whom?

  • Did you receive this help?

  • What form of assistance did you receive?

    • Please explain

  • Has this helped your situation?

    • Please explain

  • Are you satisfied with the help you received?

    • Please explain

  1. 3.

    Behavior management

  • When your child engages in problematic behavior, what do you typically do?

    • Please explain

  1. 4.

    Challenges

  • What are the main challenges you encounter in these interventions?

    • Please explain

  1. 5.

    Perception of mastery

  • Do you feel that you were doing the right thing with your child at that time?

    • Please explain

  1. 6.

    Intervention tools

  • Table listing different services and asking, “To what extent could the following services help you, in your specific situation?”

  • Referring to the services set out in the table above, please indicate the two services you would like to benefit from?

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Grenier-Martin, J., Rivard, M. Managing Challenging Behaviors at Home without Services: the Perspective of Parents Having Young Children with Intellectual and Developmental Disability. J Dev Phys Disabil (2021). https://doi.org/10.1007/s10882-021-09804-x

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Keywords

  • Challenging behavior
  • Intellectual and developmental disability
  • Families
  • Early childhood