The investigators 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. The investigators 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. The investigators
goal is to determine if remote caregiver training can improve social engagement and
communication between caregivers and their child with TSC.
The investigators hope that by adapting the caregiver training version of JASPER to be
delivered through telehealth methods, the investigators 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.
The investigators will recruit 66 children, 22 per year whom have been clinically
diagnosed with TSC, are 12-36 months of age, English as primary language at home, and
have one parent available for weekly remote video conferencing. Participants that meet
criteria will be asked to complete assessments from their home (kits will be mailed to
them), which will take several sessions (approximately 2.5 hours). During these
assessment sessions via Zoom, participants will be shown how to do BOSA, SPACE and CCX
assessments. A Vineland and Ages and Stages Questionnaire will also be done during these
sessions, but it's just questionnaires. The SPACE and CCX are particulary important
because the participants will have to record themselves throughout the study doing these
assessments. A brief introduction to JASPER will also be given during this period of
assessments. Randomization will occur after assessments are complete. Participants
randomized to intervention will need to meet with the research staff for 12 weeks via
Zoom to discuss their recorded sessions. Each participant in the intervention group is
expected to submit (via UCLA Box) a 30-40 minute video doing JASPER with their child.
These videos will be discussed during the Zoom calls. The group not randomized to
intervention, will continue to care for their child as usual for those 12 weeks. They
will not need to record or meet via Zoom with the research staff. At the end of the 12
weeks, all participants will record themselves doing the two assessments that were taught
at UCLA. They will do and record these assessments again 12 weeks after that in the
3-month follow up. The total study is for 6 months.