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

项目摘要/摘要 随着新冠肺炎的传播，公共卫生预防措施要求物理距离和各种 就地安置令，使家庭和社区生活的方方面面发生了迅速和实质性的变化。数据 来自新冠肺炎的数据，以及过去国家紧急情况的证据支持，表明照顾者面临明显的风险 由于当前的大流行，对二次健康的影响。新冠肺炎被形容为一款“完美的” 由于与大流行有关的恐惧、社会孤立、 创伤后应激障碍和心理健康治疗障碍。日常生活的这些变化尤其是 对患有神经遗传疾病(NGC)的儿童的家庭来说具有挑战性，他们经历了高水平的基线 压力，特别容易受到针对性治疗服务减少的影响，并依赖于医疗和 因新冠肺炎相关关闭而中断的教育服务。具体地说，照顾者 由于大流行，他们自己很容易受到与压力有关的心理和身体健康挑战； 他们很少接受针对自己心理健康需求的治疗，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族裔家庭中被放大。 拟议的研究将通过研究可行性来解决患有NGC的儿童的照顾者的需求， 提供个性化分类和数字治疗的新网络的有效性和影响。具体来说，我们 建议扩大和集成一系列简短的、基于证据的数字健康干预措施，以支持 照顾者心理健康、育儿自我效能感和压力。受指导的研究生实习生将 通过远程医疗实施严格、经济高效、循证的干预措施。这项工作的一项关键创新 我们将开发一种个性化的健康路由算法，将参与者与相关的 使用临床输入和生态瞬时评估(EMA)数据的治疗，简短问卷 通过一款智能手机应用程序“ping”到护理者手机。第二个创新是我们将测试 在加强治疗吸收和结果方面的点对点辅导。培训将由NGC的同事提供 照顾者使用基于证据的激励性访谈方案。在授权期结束时，我们将 产生了一种新颖、可扩展且经济高效的解决方案，可快速满足NGC的迫切需求 护理人员通过个性化、数字化的循证治疗。这种模式可以迅速地 在新冠肺炎期间针对其他高危人群(例如急救人员、教师、一线工作人员)和 未来的公共卫生危机。鉴于NGC家庭中甚至在COVID之前就存在大量未得到满足的需求- 19，这项协议有可能从根本上改变治疗的选择和获取方式的现状 在非裔美国人照顾者和其他服务不足的群体中，包括在新冠肺炎大流行之外。

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.