• Home
  • Study Details
Open

Building advocacy skills for parents of transition age youth with IDD

This purpose of this study is to learn the best way to build advocacy skills for parents/caregivers of transition age youth with IDD. The goal is to improve parent and youth health and emotional well-being. Parents will attend a group with other parents; the groups will meet 4 times, once a week for 1 hour. The research team will collect 4 surveys from parents, 4 brief surveys from youth if the parent feels they are able to provide information, 4 audio-recordings of parent-provider conversations, and video-recordings of group sessions. Parents and youth will be compensated for their time.

Age & Gender

  • 18 years ~ 99 years
  • Male, Female, Gender Inclusive

Location

North Carolina (Statewide)

What will be asked of you

Parents will attend a group with other parents; the groups will meet 4 times, once a week for 1 hour. The research team will collect 4 surveys from parents, 4 brief surveys from youth if the parent feels they are able to provide information, 4 audio-recordings of parent-provider conversations, and audio-recordings of group sessions.

Incentives

learn about new services and strategies to get them

Total length of participation:
1 1/2 years

Looking for Specific Volunteers

Able to participate:

  • You are the parent or caregiver of a child with IDD aged 11-27
  • You can attend a parent group for 4 meetings
  • You are a resident of North Carolina

Not eligible if:

  • none

Contact the Team

Visit Location

100% Remote (online, phone, text)

Additional Study Information

Principal Investigator

Kathleen Thomas
UNC Eshelman School of Pharmacy-Division of Pharmaceutical Outcomes and Policy

Study Type

Behavioral or Social
Interventional

Study Topics

Behavior
Child and Teen Health
Developmental
Mental and Emotional Health
Parents of Children

IRB Number

23-0739

ClinicalTrials.gov

NCT#22-0544

Research for Me logo

Copyright © 2013-2022 The NC TraCS Institute, the integrated home of the NIH Clinical and Translational Science Awards (CTSA) Program at UNC-CH.  This website is made possible by CTSA Grant UL1TR002489 and the National Center for Advancing Translational Sciences.

Questions?

  • This email address is being protected from spambots. You need JavaScript enabled to view it.
logo for the North Carolina Translational and Clinical Sciences Institute
logo for UNC Health
logo for UNC School of Medicine
logo for UNC Research