ArticleBehavioral sciences (Basel, Switzerland)2026
Adapting a Behavioral Intervention for Caregivers of Children with Down Syndrome or Fragile X Syndrome: A Pilot Study of RUBI-DD.
Article in Behavioral sciences (Basel, Switzerland), 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
Challenging behaviors, including noncompliance, aggression, hyperactivity, and impulsivity, are common among individuals with Fragile X Syndrome (FXS) and Down Syndrome (DS). To identify treatment needs specific to these populations, we conducted focus groups with caregivers and educators and used their input to adapt an evidence-based caregiver training program originally designed for caregivers of autistic children (i.e., The Research Units in Behavioral Intervention; RUBI). We then completed a feasibility trial in which five families of children with FXS and four families of children with DS completed a nine-session caregiver training program targeting behavioral principles, syndrome-specific information, and visual supports tailored to the unique needs of FXS or DS (adapted version of RUBI for non-autism developmental disabilities; RUBI-DD). The program demonstrated strong acceptability, with high caregiver satisfaction, 100% retention, and 100% session attendance. Across the combined sample, caregiver reports indicated significant improvements in irritability/aggression (
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