Families of Youth with Developmental Disabilities: a Theory-Based Intervention

Launched by UNIVERSITY OF NOTRE DAME · Apr 4, 2018

Keywords

ClinConnect Summary

This clinical trial is looking at a special program designed to help families who have a child with an intellectual or developmental disability. The program aims to reduce family and marital conflicts and improve communication among family members. Families that join the study will be randomly divided into two groups: one group will receive four weeks of support, including guidance on communication and education about the challenges they face, while the other group will receive self-study materials to review on their own. Throughout the year, all families will take part in assessments to see how things change.

To be eligible for this study, families need to include mothers, fathers, and typically developing siblings aged 11 to 17, along with a child who has an intellectual or developmental disability. The child with a disability must meet specific criteria, such as having a low IQ or a diagnosed condition like autism or Down syndrome. Participants must also be able to understand and answer questions in English, and both parents need to live together with the children in the home. This study is currently recruiting participants, and it offers a valuable opportunity for families to gain support and tools to enhance their communication and overall family dynamics.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Participants in all conditions will include mothers, fathers, TD siblings between 11 and 17 years old, and individuals with IDD of any age.
• • Participants must be able to understand and respond to survey questions in English
• • Parents must be cohabitating, with both participating children living in their home.
• • Individual with IDD falls into one or more of the following categories: 1) meets criteria for an intellectual disability, which would mean a measured IQ of 70-75 or lower and a measured Adaptive Functioning score of 70-75 or lower, 2) meets criteria for an Autism Spectrum Disorder based on an evaluation using the ADOS-2, SCQ, and expert clinical judgment based on DSM-5 ASD criteria, or 3) has a medically verified genetic condition (e.g., Down syndrome, Fragile X syndrome, Williams syndrome, Angelman syndrome, others) that is generally considered to be a developmental disability, and shows cognitive or adaptive functioning deficits (70-75 or below) although not necessarily deficits in both categories as would be needed for an Intellectual Disability diagnosis.
• Exclusion Criteria:
• • Siblings identified as typically developing will be excluded 1) with a score of 10 or higher on the SCQ-L, if a subsequent ADOS suggests that they have an ASD diagnosis, or 2) with a WASI-II score of 75 or lower.