Improving health for parents and their youth with intellectual disabilities
Improving the Health of Parents and Their Adolescent and Transition-age Youth With Intellectual and Developmental Disabilities
This study is testing two different ways to help parents of teens and young adults with intellectual disabilities become more active in their healthcare to see which one leads to better health for both parents and their kids.
Quick facts
| Phase | Not applicable |
|---|---|
| Study type | Interventional |
| Enrollment | 404 (estimated) |
| Ages | 11 Years to 27 Years |
| Sex | All |
| Sponsor | University of North Carolina, Chapel Hill Academic / other |
| Locations | 3 sites (Asheville, North Carolina and 2 other locations) |
| Trial ID | NCT05986305 on ClinicalTrials.gov |
What this trial studies
This study compares the effectiveness of two approaches—Go Act, a tailored advocacy curriculum, and Peer parent-directed peer learning—in increasing parent activation for those with adolescents and young adults who have intellectual and developmental disabilities. The research aims to assess how these methods impact both parent and youth health outcomes, while also exploring whether increased parent activation mediates these effects. By focusing on enhancing advocacy skills, the study seeks to address the significant unmet healthcare needs faced by these families.
Who should consider this trial
Good fit: Ideal candidates include parents of adolescents or young adults aged 11-27 with diagnosed or suspected intellectual or developmental disabilities residing in North Carolina.
Not a fit: Patients who may not benefit include those with emergency mental health needs or those unwilling to participate in recorded sessions.
Why it matters
Potential benefit: If successful, this study could empower parents with advocacy skills, leading to improved health outcomes for both parents and their children.
How similar studies have performed: Previous research has shown that enhancing parent advocacy skills can lead to better health outcomes, indicating potential success for this approach.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: Parents * Bringing their adolescent or young adult child (age 11-27), with diagnosed or suspected intellectual or developmental disability, to one of the participating clinics * Able to attend group sessions * Able to give informed consent * Resident of North Carolina Youth * Being between the ages of 11 and 27 * Having diagnosed or suspected intellectual or developmental disability * Being present for a visit at one of the study clinics Exclusion Criteria: Parents * Having evidence of emergency mental health needs * Not willing to be recorded
Where this trial is running
Asheville, North Carolina and 2 other locations
- Family Medicine at the Mountain Area Health Education Center — Asheville, North Carolina, United States (Not_yet_recruiting)
- The Carolina Institute for Developmental Disabilities — Carrboro, North Carolina, United States (Recruiting)
- UNC Adult Psychiatry Clinic — Chapel Hill, North Carolina, United States (Recruiting)
Study contacts
- Principal investigator: Kathleen C Thomas, PhD — University of North Carolina, Chapel Hill
- Study coordinator: Kathleen C Thomas, PhD
- Email: kathleen_thomas@unc.edu
- Phone: 9199663387
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.