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

项目总结/摘要 随着COVID-19的传播，公共卫生预防措施需要物理距离和各种 就地安置令，使家庭和社区生活的各个方面迅速发生重大变化。数据 从过去的国家紧急情况的证据支持，表明照顾者处于明显的风险， 因为目前的流行病对健康造成的继发性影响。COVID-19被描述为“完美的 由于与流行病有关的恐惧，社会孤立， 创伤后压力和心理健康治疗障碍。这些对日常生活的改变， 对于患有神经遗传性疾病（NGC）的儿童家庭来说， 特别容易受到有针对性的治疗服务减少的影响， 因COVID-19相关关闭而中断的教育服务。具体来说，护理人员 由于这一大流行病，他们本身容易受到与压力有关的身心健康挑战; 他们很少因为自己的心理健康需要而接受治疗，他们接受的任何治疗都是 通常与孩子的护理计划脱节，由几乎没有专业知识的从业者提供 满足NGC家庭的需求这些医疗保健差距在黑人和其他少数民族家庭中被放大。 拟议的研究将通过审查可行性， 有效性和提供个性化分诊和数字化治疗的新型网络的影响。我们特别 建议扩大和整合一系列简短的、基于证据的数字健康干预措施，以支持 照顾者心理健康，养育自我效能感和压力。指导研究生学员将 通过远程保健实施严格的、具有成本效益的循证干预措施。这项工作的一个关键创新是 我们将开发一种个性化的健康路由算法， 使用临床输入和生态瞬时评估（EMA）数据的治疗，简要问卷 通过智能手机应用程序“ping”到护理人员的手机。第二个创新是，我们将测试 在提高治疗接受率和结果方面的同行辅导。指导将由NGC同事提供 护理人员使用基于证据的动机访谈协议。在奖励期结束时，我们将 已经开发出一种新颖、可扩展且经济高效的解决方案，可快速满足NGC的迫切需求 通过个性化、数字化的循证治疗，为护理人员提供服务。该模型可以快速 COVID-19期间其他高风险人群（如急救人员、教师、一线工作人员）的比例，以及 未来的公共卫生危机。鉴于在COVID之前，NGC家庭中存在大量未满足的需求， 19，该协议有可能从根本上改变如何选择和获得治疗的现状 在NGC护理人员和其他服务不足的群体中，包括在COVID-19大流行之后。

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.