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Feasibility study of a parent-driven intervention for youth with Down syndrome

M Stone-Heaberlin1,2, A Blackburn1,2, E K Hoffman3

  • 1Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA.

Journal of Intellectual Disability Research : JIDR
|July 9, 2024
PubMed

Insights

This study found that an adapted parent training program was feasible and acceptable for children with Down syndrome, showing improvements in behavior and executive functioning. Larger trials are needed to confirm these promising results for behavioral interventions.

Area of Science:

  • Behavioral science
  • Developmental psychology
  • Clinical psychology

Background:

  • Children with Down syndrome often experience behavioral and emotional challenges, including difficulties with noncompliance, emotion regulation, and executive functioning.
  • Existing behavioral interventions are rarely tailored specifically for this population.
  • The Research Units in Behavioral Intervention (RUBI) Parent Training for Disruptive Behaviors, initially developed for autism, offers a potential framework.

Purpose of the Study:

  • To assess the feasibility and acceptability of an adapted RUBI parent training program for caregivers of children with Down syndrome.
  • To identify suitable outcome measures for future large-scale clinical trials.
  • To explore the effectiveness of a behavioral intervention (BEH) compared to an educational intervention (EDU).

Main Methods:

  • A double-blind randomized feasibility pilot clinical trial was conducted.
  • Twenty caregivers and their youth with Down syndrome participated.
  • Participants were assigned to either a behavioral intervention (BEH) or an educational intervention (EDU) group, each consisting of five individual sessions over 5-8 weeks.

Main Results:

  • Both the BEH and EDU interventions were rated as feasible, with high parental adherence and treatment satisfaction.
  • Significant reductions in externalizing behaviors, irritability, and hyperactivity were observed in both groups.
  • Improvements in behavioral regulation and executive functioning were noted over time, with no significant impact on caregiver functioning.

Conclusions:

  • The adapted RUBI program and the educational program demonstrated feasibility and acceptability in a pilot trial with children with Down syndrome.
  • Promising preliminary findings suggest these interventions can reduce behavioral challenges and improve executive functioning.
  • Larger clinical trials are warranted to validate these findings and establish treatment efficacy.
Abstract

Keywords:
Down syndromebehaviour interventioncaregiver educationexternalising behavioursinternalising behaviours

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