Adapting a Psychosocial Support Intervention for the Rett Syndrome Community
Colorado State University
Summary
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.
Description
Rett syndrome (RTT) is a rare, progressive neurodevelopmental disorder characterized by early developmental regression, severe intellectual and physical disability, seizures, feeding and breathing abnormalities, and a markedly reduced lifespan. These complex medical needs require intensive, lifelong caregiving, most often provided by parents. As a result, RTT profoundly affects not only the child but the entire family system. Parent caregivers must navigate highly specialized healthcare systems while simultaneously providing continuous, around-the-clock care and managing significant emotional…
Eligibility
- Age range
- 18+ years
- Sex
- All
- Healthy volunteers
- No
Inclusion Criteria: * Adult caregiver (≥18 years old) of an individual with Rett syndrome Caregiver of a child or individual of any age with a confirmed clinical diagnosis of Rett syndrome. * English-speaking and able to read and understand study materials Willing and able to participate in a 6-week, online psychosocial intervention delivered via a private social media platform * Willing and able to complete electronic surveys and, if selected, participate in virtual interviews * For randomized phase participation: child is receiving standard pharmacologic treatment for Rett syndrome (e.g., D…
Interventions
- OtherThose who have patients prescribed Daybue
Participants must be receiving Daybue (trofinetide) as prescribed and managed by their treating clinician as part of routine clinical care. The study does not assign, initiate, modify, or manage pharmacologic treatment. Participants are required to continue taking Daybue according to their physician's prescription during the study period. Medication dosing, monitoring, and clinical decision-making remain entirely under the care of the participant's healthcare provider.
- OtherCaregiver Speaks + Daybue
Participants receive standard pharmacologic treatment for Rett syndrome (e.g., Daybue \[trofinetide\]) as prescribed and managed by their clinical care team. Medication use follows routine clinical practice, including dosing, monitoring, and management of side effects. No experimental medication dosing or alteration is required as part of this study. Pharmacologic treatment is provided either alone or in combination with the Caregiver Speaks-RTT psychosocial intervention, depending on randomized group assignment.
Location
- Colorado State UniversityFort Collins, Colorado