Adapting a Psychosocial Support Intervention for the Rett Syndrome Community
Keywords
Rett Syndrome, caregivers, RTT, grief, providers
Types of Research
Research methods development/testing; community-based participatory
Summary
Rett syndrome (RTT) is a rare neurodevelopmental disorder caused primarily by mutations in the MECP2 gene. It is characterized by early developmental delays, regression in communication and motor skills, seizures, and severe medical comorbidities. These conditions require intensive caregiving, often by parents who must also navigate fragmented healthcare systems and cope with anticipatory grief and emotional trauma. Caregiver Speaks is a meaning-centered, photo-based storytelling intervention. The intervention facilitates the reconstruction of personal narratives, enabling caregivers to reframe their experiences. The proposed project is the initial phase of a long-term project where we plan to pilot the adapted Caregiver Speaks intervention in a community sample of RTT caregivers. This is a mixed methods community-engaged research project that utilizes Rapid Community Translation (RCT) at a single site, which will include community engagement as well as provider feedback and education to assess feasibility and adaptive approaches.
Significance
The objective of the project is to refine the content, delivery, and integration of Caregiver Speaks–RTT to ensure alignment with family needs and clinical care contexts. The goal is to preserve core functions while ensuring relevance, acceptability, and sustainability in the RTT community.
Impact
Through this mixed methods community-engaged research project that utilizes Rapid Community Translation (RCT) we will better understand how to implement Caregiver Speaks for RTT Caregivers. It will enable us to pilot the adapted Caregiver Speaks intervention offering a low-cost, scalable, and peer-supported approach that can mitigate the isolation and emotional distress frequently reported by RTT families.
Implications for Reducing Health Disparities
RTT conditions require intensive, round-the-clock caregiving, often by parents who must also navigate fragmented healthcare systems and cope with anticipatory grief and emotional trauma.³⁻⁴ Parent psychological distress has been shown to correlate with reduced quality of life for children with complex medical needs, reinforcing the urgency of family-centered interventions.⁵⁻⁶ Caregiver Speaks has been effective in prior studies with adult caregivers; it has never been adapted for parents of children with neurodevelopmental or life-limiting conditions. Adapting this intervention to RTT represents a significant innovation, offering a low-cost, scalable, and peer-supported approach that can mitigate the isolation and emotional distress frequently reported by RTT families.11
Products
Yang AR, Washington KT, Benson JJ, Bogdewiecz TL, Rolbiecki AJ. Meaning making during bereavement as part of caregiver speaks, a narrative photo-elicitation intervention for Caregivers of persons living with dementia. Dementia. 2025;0(0). doi:10.1177/14713012251333484References
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