Psychosocial Support for Rett Syndrome
What You Need to Know Before You Apply
What is the purpose of this trial?
This study seeks to adapt Caregiver Speaks, a psychosocial supportive intervention delivered through Facebook, for parent caregivers of children living with Rett Syndrome. This study also seeks to explore feasibility and acceptability of implementing the adapted intervention, and its impact on parent psychological outcomes.
Are You a Good Fit for This Trial?
This trial is for parents or caregivers of children with Rett Syndrome, especially those whose child has been prescribed Daybue. Participants should be able to use Facebook and are interested in psychosocial support.Inclusion Criteria
Exclusion Criteria
What Are the Treatments Tested in This Trial?
Interventions
- Caregiver Speaks
Trial Overview
The study is testing an online support program called Caregiver Speaks, delivered via Facebook, for caregivers of children with Rett Syndrome. Some participants will also have their child on the medication Daybue. The goal is to see if this support helps caregiver well-being.
How Is the Trial Designed?
2
Treatment groups
Experimental Treatment
Active Control
Participants in this arm will receive standard pharmacologic treatment for Rett syndrome (e.g., Daybue) in combination with the Caregiver Speaks-RTT psychosocial intervention, a 6-week, moderated, online, meaning-centered storytelling program designed to support caregiver wellbeing.
Participants in this arm will receive standard pharmacologic treatment for Rett syndrome (e.g., Daybue) as prescribed by their clinical care team. Participants in this arm will not receive the Caregiver Speaks-RTT psychosocial intervention during the randomized study period but will be offered the opportunity to participate in the Caregiver Speaks-RTT intervention after completion of study follow-up assessments (wait-list control).
Find a Clinic Near You
Who Is Running the Clinical Trial?
Colorado State University
Lead Sponsor
University of Denver
Collaborator
Children's Hospital Colorado
Collaborator
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