Optimizing a Personalized Health Approach for Virtually Treating High-Risk Caregivers of Children With Neurogenetic...

Area of Science:

• Neuroscience
• Public Health
• Digital Health

Background:

• Caregivers of children with rare neurogenetic conditions (NGCs) experience significant physical and mental health challenges.
• The COVID-19 pandemic worsened these challenges due to disruptions in essential support services.
• Tele-mental health and parenting support services have expanded, offering potential solutions for NGC caregivers.

Purpose of the Study:

• To prospectively test which evidence-based telehealth interventions best meet the needs of NGC caregivers through the Project WellCAST clinical trial.
• To evaluate the effectiveness of a personalized health algorithm in matching caregivers to appropriate telehealth support programs.
• To assess the impact of peer coaching versus standard staff coaching on caregiver outcomes.

Main Methods:

• Project WellCAST is a 24-week clinical trial enrolling NGC caregivers.
• Caregivers undergo two randomizations: algorithm-based vs. quasi-random assignment to support programs, and peer coaching vs. staff coaching.
• Interventions include various evidence-based therapies (e.g., ACT, DBT, CBT) delivered via telehealth, alongside ecological momentary assessments and a personalized health algorithm.

Main Results:

• Data collection across four waves (August 2023-September 2025) will inform algorithm optimization.
• Preregistered analyses will compare feasibility, efficacy, and acceptability of different assignment methods and coaching styles.
• Secondary analyses will examine the effectiveness of individual support programs and peer coaching.

Conclusions:

• Project WellCAST aims to determine if a digital health algorithm and peer coaching can enhance telehealth support for NGC caregivers.
• Findings may inform public health strategies for mental health crises in other high-need populations.
• The study highlights the potential of digital tools and community-academic partnerships in supporting vulnerable caregiver groups.