Because of the COVID-19 pandemic, in-person services for individuals with neurodevelopmental disabilities were disrupted globally, resulting in a transition to remote delivery of services and therapies. For individuals with neurogenetic conditions, reliance on nonclinical caregivers to facilitate all therapies and care was unprecedented. The study aimed to (1) describe caregivers’ reported impact on their dependent’s services, therapies, medical needs, and impact on themselves as a result of the COVID-19 pandemic and (2) assess the relationship between the extent of disruption of services and the degree of self-reported caregiver burden. Two online questionnaires were completed by caregivers participating in Simons Searchlight in April and May 2020. Surveys were completed by caregivers of children or dependent adults with neurodevelopmental genetic conditions in Simons Searchlight. Caregivers reported that the impact of the COVID-19 pandemic moderately or severely disrupted services, therapies, or medical supports. The majority of caregivers were responsible for providing some aspect of therapy. Caregivers reported “feeling stressed but able to deal with problems as they arise,” and reported lower anxiety at follow-up. Caregivers reported that telehealth services were not meeting the needs of those with complex medical needs. Future surveys will assess if and how medical systems, educational programs, therapists, and caregivers adapt to the challenges arising during the COVID-19 pandemic.

由于 COVID-19 大流行，为神经发育障碍者提供的面对面服务在全球范围内中断，导致向远程提供服务和治疗的过渡。对于患有神经遗传疾病的个体来说，依赖非临床护理人员来促进所有治疗和护理是前所未有的。该研究旨在 (1) 描述护理人员报告的 COVID-19 大流行对他们受抚养人的服务、治疗、医疗需求的影响以及对他们自己的影响，以及 (2) 评估服务中断的程度与自我报告的照顾者负担的程度。2020 年 4 月和 5 月，参与​​ Simons Searchlight 的护理人员完成了两份在线问卷。调查由西蒙斯探照灯中患有神经发育遗传病的儿童或受抚养成人的看护人完成。护理人员报告说，COVID-19 大流行的影响中度或严重中断了服务、治疗或医疗支持。大多数护理人员负责提供某些方面的治疗。护理人员报告说“感到压力，但能够在问题出现时处理”，并报告在随访时焦虑程度较低。护理人员报告说，远程医疗服务无法满足那些有复杂医疗需求的人的需求。未来的调查将评估医疗系统、教育计划、治疗师和护理人员是否以及如何适应 COVID-19 大流行期间出现的挑战。护理人员报告说，COVID-19 大流行的影响中度或严重中断了服务、治疗或医疗支持。大多数护理人员负责提供某些方面的治疗。护理人员报告说“感到压力，但能够在问题出现时处理”，并报告在随访时焦虑程度较低。护理人员报告说，远程医疗服务无法满足那些有复杂医疗需求的人的需求。未来的调查将评估医疗系统、教育计划、治疗师和护理人员是否以及如何适应 COVID-19 大流行期间出现的挑战。护理人员报告说，COVID-19 大流行的影响中度或严重中断了服务、治疗或医疗支持。大多数护理人员负责提供某些方面的治疗。护理人员报告说“感到压力，但能够在问题出现时处理”，并报告在随访时焦虑程度较低。护理人员报告说，远程医疗服务无法满足那些有复杂医疗需求的人的需求。未来的调查将评估医疗系统、教育计划、治疗师和护理人员是否以及如何适应 COVID-19 大流行期间出现的挑战。”，并报告了随访时的焦虑程度较低。护理人员报告说，远程医疗服务无法满足那些有复杂医疗需求的人的需求。未来的调查将评估医疗系统、教育计划、治疗师和护理人员是否以及如何适应 COVID-19 大流行期间出现的挑战。”，并报告了随访时的焦虑程度较低。护理人员报告说，远程医疗服务无法满足那些有复杂医疗需求的人的需求。未来的调查将评估医疗系统、教育计划、治疗师和护理人员是否以及如何适应 COVID-19 大流行期间出现的挑战。