Identifying healthcare and telehealth access for people with hand spasticity

项目总结/摘要 我们在COVID-19大流行之前所了解的世界不太可能再回来。结构和行为 远程工作、社交和学习等变化现在已成为日常生活的一部分。远程保健具有 作为医疗保健提供的解决方案出现，并通过Zoom保持社交联系， 团队和其他软件应用程序。这些都是很好的解决方案，为一般人群，但人们与 手痉挛可能无法在没有帮助的情况下使用电子设备。痉挛，是一些 神经系统疾病，导致肌肉紧张，干扰功能性运动，影响日常活动 生活（ADL），并增加照顾者的负担。中度至高度痉挛会导致 独立，甚至制度化。痉挛护理的目标是实现最佳的独立性， 生活的各个方面，只有在需要时才能得到他人的帮助和技术的帮助;然而， 具有中度到高度手部痉挛的个人可以访问和利用技术， 其独立性是未知的。因此，本申请响应特别关注通知 调查COVID-19对手部痉挛患者的影响，并确定当前的康复需求 为今后的干预提供信息。这项研究的长期目标是支持最佳独立性， 有痉挛和良好生活质量的人。本探索性序贯混合方法研究的基本原理， 它以社会生态模型为指导，是为了确定远程医疗服务对接受 保健和手痉挛的成年人保持独立的能力。具体目标是： 目标1。确定获得医疗保健和远程保健的成人中度至高度手痉挛， 社会各界 目标2：确定患有艾滋病的成年人获得远程保健的计算机知识、障碍和促进因素 中度到高度的手部痉挛。 目标3：确定远程保健服务和计算机知识对成年人独立性的影响程度 生活在社区中的中度到高度痉挛。 Approach. 30名生活在社区中的中度至高度手痉挛的成年人将被 招募的NIH和PROMIS工具将评估冠状病毒的影响，获得技术，上灵巧， 身体功能，ADL和工具性ADL，心理影响，孤独感，以及社会和情感 健康利用冠状病毒的影响和技术工具，我们将首先量化 大流行病对医疗保健、远程保健和独立性的影响。然后我们将进行45到60分钟的半- 结构化访谈，将提供更深入的了解远程医疗素养，其障碍和促进因素， 影响保持独立性。这项研究意义重大，因为它精确地指出了未解决的与Covid相关的 影响这一群体保持独立能力的经历和关切。

Project Summary/Abstract The world we knew prior to the COVID-19 pandemic is unlikely ever to return. Structural and behavioral changes, such as remote working, socialization, and learning, are now part of everyday life. Telehealth has emerged as a solution for health care delivery, and social connections have been maintained through Zoom, Teams, and other software applications. These are good solutions for the general population, but people with hand spasticity may not be able to use electronic devices without assistance. Spasticity, a sequela of some neurological conditions, causes tight muscles, interferes with functional movements, affects activities of daily living (ADLs), and increases caregiver burden. Moderate to high levels of spasticity cause loss of independence and even institutionalization. The goal of spasticity care is to achieve optimal independence in all aspects of life, with the assistance of others and aid of technology only as needed; however, the degree to which individuals with moderate to high levels of hand spasticity can access and draw upon technology to maintain their independence is unknown. Therefore, this application responds to the notice of special interest to investigate the impact of COVID-19 on people with hand spasticity and identify current rehabilitation needs to inform future interventions. The long-term goal of this research is to support optimal independence for people with spasticity and good quality of life. The rationale for this exploratory sequential mixed-method study, which is guided by the socio-ecological model, is to determine the impact of telehealth access on the receipt of health care and the ability of adults with hand spasticity to maintain independence. Specific aims are to: Aim 1. Identify access to health care and telehealth for adults with moderate to high levels of hand spasticity in the community. Aim 2: Identify computer literacy and barriers and facilitators to accessing telehealth for adults living with moderate to high levels of hand spasticity in the community. Aim 3: Identify the extent to which telehealth access and computer literacy affect independence for adults living with moderate to high level of spasticity in the community. Approach. Thirty adults with moderate to high levels of hand spasticity living in the community will be recruited. NIH and PROMIS tools will assess Coronavirus Impact, access to technology, upper dexterity, physical functioning, ADLs and Instrumental ADLs, psychological impact, loneliness, and social and emotional health. Using the Coronavirus Impact and access to technology tools, we will first quantify the effect of the pandemic on health care, telehealth, and independence. Then we will conduct 45- to 60-minute semi- structured interviews that will offer greater insight into telehealth literacy, its barriers and facilitators, and its impact on maintaining independence. This study is significant because it pinpoints unaddressed Covid-related experiences and concerns affecting the ability of this population to maintain independence.