TSC Remote Assessment and Intervention (TRAIN)
Abstract
Most individuals with tuberous sclerosis complex (TSC) will experience some form of neurodevelopmental disability in their lifetime. The form and severity of these disabilities can vary, but appropriate early intervention can help to reduce the developmental impact of these disabilities. One disability commonly associated with TSC is autism spectrum disorder (ASD), with as many as 60% of children with TSC also developing ASD. While few targeted early behavioral interventions have been tested for TSC, there has been much more progress in ASD. Fortunately, there is great potential in applying these same early interventions for children with TSC. However, for families of children with TSC, getting access to high-quality early behavioral interventions can be challenging. Due to the rarity of TSC, there are fewer treatment centers equipped with the types of early intervention services that have the potential to improve developmental outcomes. It is important then that we attempt to find novel ways of providing appropriate and timely services for families of children with TSC. Caregiver training is one way to provide families the skills to implement intervention strategies in their home environment. By taking advantage of telehealth technology, we may be able to expand the reach of caregiver training programs to aid families regardless of their geographical location. We propose a study to adapt an evidence-based caregiver training program to improve access in order to better serve the TSC community. The proposed adapted caregiver training program is based on a targeted behavioral intervention called JASPER (Joint Attention, Symbolic Play, Engagement, and Regulation) that has successfully improved outcomes in children with ASD. Importantly, JASPER specifically targets two key developmental domains known to be critical for young children with TSC, social communication and play. Recent work with JASPER in children with TSC shows promise, but still requires a commitment to regular in-person sessions. We hope to test an adapted version of the caregiver training version of JASPER, where the entire training is provided remotely through weekly teleconferences and video feedback. Our goal is to determine if remote caregiver training can improve social engagement and communication between caregivers and their child with TSC. We hope that by adapting the caregiver training version of JASPER to be delivered through telehealth methods, we can help more families gain access to high-quality training. There is a tremendous need for high-quality early intervention, and remote caregiver training can give families the skills they need to make impactful and lasting improvements for their child with TSC.
Document Details
- Document Type
- DoD Grant Award
- Publication Date
- Mar 10, 2021
- Source ID
- W81XWH2010085
Entities
People
- Connie Kasari
Organizations
- United States Army
- University of California, Los Angeles