Optimizing a Personalized Health Approach for Virtually Treating High-Risk Caregivers During COVID-19 and Beyond

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PROJECT SUMMARY/ABSTRACT With the spread of COVID-19, public health precautions have required physical distancing and a variety of shelter-in-place orders, causing rapid and substantial shifts in all aspects of family and community life. Data from COVID-19, supported by evidence from past national emergencies, suggest caregivers are at clear risk for secondary health effects because of the current pandemic. COVID-19 has been described as a “perfect vector for a mental health epidemic” due to the accumulated effects of pandemic-related fear, social isolation, post-traumatic stress, and mental health treatment barriers. These changes to daily life have been especially challenging for families of children with neurogenetic conditions (NGC), who experience high levels of baseline stress, are particularly vulnerable to reductions in targeted therapeutic services, and rely on medical and educational services that have been disrupted by COVID-19 related closures. Specifically, caregivers themselves are vulnerable to stress-related mental and physical health challenges because of the pandemic; they rarely receive treatment for their own mental health needs, and any treatments they do receive are typically disconnected from their child's care plan and are delivered by practitioners with little-to-no expertise in the needs of NGC families. These health care gaps are amplified among Black and other minority families. The proposed study will address the needs of caregivers of children with NGC by examining the feasibility, efficacy, and impact of a novel network for delivering personalized triage and digital treatment. Specifically, we propose to scale up and integrate a series of brief, evidence based digital health interventions to support caregiver mental health, parenting self-efficacy, and stress. Supervised graduate student trainees will implement rigorous, cost-effective, evidence-based interventions via telehealth. A key innovation of this work is that we will develop a personalized health routing algorithm that matches participants with relevant treatments using both clinical inputs and ecological momentary assessment (EMA) data, brief questionnaires “pinged” to caregiver phones via a smartphone app. A second innovation is that we will test the efficacy of peer-to-peer coaching in enhancing treatment uptake and outcomes. Coaching will be delivered by fellow NGC caregivers using an evidence-based motivational interviewing protocol. By the end of the award period, we will have generated a novel, scalable, and cost-effective solution for rapidly meeting acute needs for NGC caregivers through personalized, digital delivery of evidence-based treatments. This model can be rapidly scaled for other high-risk populations during COVID-19 (e.g. first responders, teachers, frontline workers) and future public health crises. Given substantial unmet needs existed among NGC families even prior to COVID- 19, this protocol has potential to fundamentally shift the status-quo for how treatment is selected and accessed in NGC caregivers and other underserved groups, including beyond the COVID-19 pandemic.