Back to search results

Supporting Families of Youth with Developmental Disabilities

This study is testing a program to help families with a child who has an intellectual and/or developmental disability. It aims to improve relationships and communication between parents and their typically developing adolescent children. You might receive "Center Sessions," which are coaching sessions, or "At-home" self-study materials with staff contact. We're looking for families where parents live together and both children (the one with the disability and the typically developing sibling aged 11-17) live at home. Success will be measured by changes in marital satisfaction, how parents handle conflict, and overall family functioning after one year. The study is currently evaluating its status.

Study design
This is an interventional study with 150 planned participants. Families will be randomly assigned to either receive the intervention program or self-study materials.
What's involved
Participants will complete a pre-test assessment and three post-test assessments over one year. The intervention program involves a four-week period of psychoeducation and communication coaching.
Compensation
Not stated in the trial record.
Follow-up
Participants will be followed for one year, with assessments at that time to measure changes in marital satisfaction, interparental conflict, and family functioning.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT03495440

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

Recruiting
NAAll AgesInterventionalTreatment
University of Notre Dame
~150 participants
Updated 2024-11-15 on ClinicalTrials.gov
What's tested:Center SessionsAt-home

At a glance

Recruiting sites
1 of 2 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Change in marital satisfaction -- Short Marital Adjustment Scale (SMAT)
Measured over 1 year
+13 more outcomes measured

Conditions

Family Conflict
Marital Conflict
Communication

Explore related trials

Developmental DisorderIntellectual Disability

Where it's being run

2 sites across 1 states
Indiana2

Study leadership

  • Edward M Cummings, PhD · PRINCIPAL_INVESTIGATOR · University of Notre Dame

Who to contact

Edward M Cummings, PhD
[email protected]
574-631-4947
Email the study team

Opens a ready-to-send draft in your own email app — review before sending.

Do you actually qualify for this trial?

Add a private profile and we'll compare every criterion below against your situation — and tell you which ones are met, uncertain, or excluding.

Check eligibility for this trial ~2 min · HIPAA-protected · delete anytime
Eligibility criteria

Inclusion

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

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.

What this trial measures

  • Change in marital satisfaction -- Short Marital Adjustment Scale (SMAT)1 year

    15-item parent self-report questionnaire measuring indices of marital satisfaction, including matters of disagreement, relationship dynamics, and happiness.

  • Change in hostile interparental conflict -- O'Leary Porter Scales (OPS)1 year

    10-item parent self-report questionnaire designed to measure overt marital hostility exhibited in front of the children.

  • Change in family functioning -- Family Environment Scale (FES)1 year

    27-item self-report measure that assesses dimensions of family functioning, specifically, the social domain of family relationships (cohesion, expressiveness, and conflict) to be completed by parents and typically developing siblings.

  • Change in typically developing siblings' perception of interparental conflict -- Children's Perception of Inter-parental Conflict (CPIC)1 year

    19-item self-report questionnaire that captures three dimensions of marital conflict (frequency, intensity, and resolution) perceived by children.

  • Change in typically developing siblings' levels of attachment to parents -- Inventory of Parent and Peer Attachment (IPPA)1 year

    25-item self-report questionnaire designed to assess adolescents' perceptions of the positive and negative affective dimension of relationships with their parents and peers. Typically developing siblings complete two forms (father and mother) on three scales: trust, communication, and alienation.

  • Change in typically developing siblings' emotional security -- Security in the Subsystem (SIS) and Security in the Family System (SIFS)1 year

    The SIS is a child-report of the feelings and behaviors experienced when witnessing marital conflict. The SIFS is a self-report measure of adolescents' security in the family as a whole. Scores will be used in latent variables as a broad indicator of typically developing siblings' emotional security.

  • Change in typically developing siblings' adjustment -- Strengths and Difficulties Questionnaire (SDQ)1 year

    25-item parent-report measure of prosocial behavior and psychopathology in their children.

  • Change in typically developing siblings' behavior -- Youth Self-Report (YSR)1 year

    Adolescent self-report measure of perceived externalizing and internalizing behaviors.

  • Change in typically developing siblings' depressive symptomatology -- Child Depression Inventory (CDI)1 year

    27-item self-report questionnaire measuring the extent of depression symptoms in children.

  • Change on parents' depressive symptomatology - Beck Depression Inventory (BDI-II)1 year

    Parent self-report measure used to assess the severity of depression symptoms.

  • Change in parents' problem drinking behaviors -- Parental Alcohol Experiences scale (PAE)1 year

    Parent self-report measure that provides a continuous measure of parental problem drinking.

  • Change in the quality of family conflict interactions -- Family Interactions Coding System (FICS)1 year

    Video recorded quadratic (parent, TD sibling, child with IDD) interactions during which families discuss a topic of conflict are coded using an observational coding system to assess overall levels of constructiveness, destructiveness and resolution.

  • Change in the quality of couples' conflict interactions -- Family Interactions Coding System (FICS)1 year

    Video recorded dyadic (interparental) interactions during which couples discuss a topic of conflict are coded using an observational coding system to assess overall levels of constructiveness, destructiveness and resolution.

  • Change in family interactions in the home -- Daily Diaries6 months

    Parents complete 15 daily diaries following the 6-month and 12-month follow up assessments comprising of self-reports on the occurrence and quality of daily interparental and parent-child interactions.