Project Summary

The Problem: A well-functioning system of care should provide a broad array of services that can support families with a child with complex healthcare needs. Nonetheless, adolescents and transition-age youth (hereafter youth) with intellectual and developmental disabilities (IDD) experience rates of unmet need for health care up to six times higher than others, resulting in poor health and quality of life for themselves and their families. The system of care approach has achieved positive impacts for children with IDD and their families, but updates call for training to help parents develop advocacy skills on behalf of their children.

Rationale and Importance: Parent advocacy skills are a promising target for increasing parent self-efficacy, which in turn is associated with better parent and youth health outcomes. Parent advocacy skills for youth in transition are the internal states (activation, self-efficacy) and processes (identifying and working toward goals, chronic disease self-management, shared decision making with providers, persistence working toward goals) that result in improved parent health outcomes (reduced stress and depression) and improved youth health outcomes (social functioning, emotional health). Parent advocacy skills can be increased through a psychoeducational advocacy skills curriculum or through parent-directed peer learning. However, the comparative effectiveness of these two strategies for families raising youth with IDD is not yet known.

Study Design: The study will use a mixed methods approach with a randomized controlled trial (N=404) to test the comparative effectiveness of a tailored advocacy curriculum versus a parent-directed peer learning intervention for increasing parent activation and resulting health outcomes among parents of youth with IDD and their child. Study Population: Parents of adolescents/young adults with IDD aged 11-27 receiving outpatient services at four IDD clinics serving clients across North Carolina (N=404, 202 per arm). Data: Primary data from parents, youth, and providers; observed data from parent conversations and group participation, linked electronic health record data. Primary outcomes: Parent activation, parent depression, youth social functioning. Secondary outcomes: Parent observed activation, self-efficacy, alliance, goal attainment and stress; youth unmet need for healthcare, psychiatric crisis service use. Qualitative participants: Parents of youth with IDD (N=24), youth with IDD aged 11-27 (N=24), clinic staff and intervention facilitators (N=24). Team stakeholder advisors: Parents of youth with IDD (N=6), youth with IDD (N=6), and IDD advocates (N=4).

Who Can Use Results and How: Parents and clinics can use findings to decide if taking or providing a parent advocacy class can build advocacy skills and lead to improved parent and youth health outcomes. The proposed study addresses the health disparities of PCORI priority populations with IDD, who are adolescents and transition-age youth, and who face considerable family caregiving burden. Findings will help parents as well as providers choose which of the two group interventions best builds parent advocacy skills that they can use to help meet the needs of their adolescent/transition-age youth with IDD. Further, the proposed study has the potential to generate findings that can improve the development and timely application of parent activation skills together with the long-term improvements in youth health and functioning supported by them.

Project Information

Kathleen Thomas, MPH, PHD
The University of North Carolina at Chapel Hill

Key Dates

December 2021
June 2026


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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
Research Priority Area
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Last updated: January 20, 2023