Project Summary

This research project is in progress. PCORI will post the research findings on this page within 90 days after the results are final.

What is the research about?

Intellectual and developmental disabilities, or IDD, can affect people’s ability to learn, reason, communicate, and solve problems. Support services for youth with IDD can be complex and hard to navigate. Learning from peers who have used these services can help parents find and use support services for IDD, which may improve outcomes for youth.

In this study, the research team is comparing two peer-led approaches, called GOACT and PEER, to help parents build skills to navigate services for youth with IDD. 

GOACT covers a general set of topics, such as managing the health needs of youth and working with providers, like doctors and care coordinators. Through methods such as problem-solving and role-playing, parents build skills to advocate for youth in different settings. In PEER, parents choose the topics that are most important to them. Parents talk about ways to advocate for youth. They also learn from each other’s experiences. 

Who can this research help?

Results may help clinics when considering ways to help parents build advocacy skills and navigate support services. 

What is the research team doing?

The research team is enrolling 404 parents of youth and young adults with IDD who are ages 11–27. These youth and young adults receive care at clinics in North Carolina. The team is assigning parents by chance to receive GOACT or PEER. Both programs include weekly one-hour sessions for four weeks. Trained clinicians with a master’s degree in mental health care facilitate GOACT and PEER sessions.

At the start of the study and again 6, 12, and 18 months later, the research team is surveying parents about: 

  • Parent skills, knowledge, and confidence in managing their child’s services and health
  • Parent stress and depression
  • Youth well-being and service use

Finally, the research team is interviewing parents, youth, and clinic staff to learn what worked well and what could be improved about GOACT and PEER.

Parents of youth with IDD, youth with IDD, and IDD advocates are helping to plan and conduct this study.

Research methods at a glance

Design ElementDescription
DesignRandomized controlled trial
Population404 parents of adolescents and young adults with IDD ages 11-27 and receiving outpatient services
Interventions/
Comparators
  • GOACT
  • PEER
Outcomes

Primary: parent self-efficacy, parent depression, youth social functioning

Secondary: parent–provider shared decision making and alliance, goal attainment, parent stress, youth service use

Timeframe  Timeframe Length of follow-up for collecting data on primary outcomes. View Glossary 18-month follow-up for primary outcomes

Project Information

Kathleen Thomas, MPH, PHD
The University of North Carolina at Chapel Hill
$4,249,956
Improving the Health of Parents and Their Adolescent and Transition-Age Youth With IDD

Key Dates

December 2021
June 2026
2021

Tags

Award Type
Health Conditions Health Conditions These are the broad terms we use to categorize our funded research studies; specific diseases or conditions are included within the appropriate larger category. Note: not all of our funded projects focus on a single disease or condition; some touch on multiple diseases or conditions, research methods, or broader health system interventions. Such projects won’t be listed by a primary disease/condition and so won’t appear if you use this filter tool to find them. View Glossary
Populations Populations PCORI is interested in research that seeks to better understand how different clinical and health system options work for different people. These populations are frequently studied in our portfolio or identified as being of interest by our stakeholders. View Glossary
Intervention Strategy Intervention Strategies PCORI funds comparative clinical effectiveness research (CER) studies that compare two or more options or approaches to health care, or that compare different ways of delivering or receiving care. View Glossary
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: December 20, 2023