Web-based Self-management Tool Targeting Patients and their Informal Caregivers

自我护理是提高慢性疾病退伍军人预后的关键，因为没有最佳的 自我照顾，这些退伍军人面临着糟糕的生活质量、病情恶化和迫在眉睫的死亡。现有 旨在加强自我护理的工具有限，因为它们通常需要面对面接触，以及 它们没有解决可能参与退伍军人护理的非正式照顾者的需求。这个 长期目标是改善以下人群的发病率、死亡率和患者报告的健康结果 通过提高对自我护理建议的遵从性，帮助患有慢性病的退伍军人。这件事的目的是 研究是开发和试点测试一个基于网络的自我照顾计划，目标是克服自我照顾的障碍 患有慢性病的退伍军人及其照顾者所经历的护理。我们最初开发的 Success(在疾病中使用夫妇护理增强的自我护理)，6周的自我护理支持 该计划在患有慢性心力衰竭的退伍军人及其配偶照顾者中进行了试点测试。 根据参与者的喜好，通过电话或面对面提供此服务 可接受性。从这项试点研究中学到的经验教训包括有必要建立一个非疾病为重点的 计划；需要聘请非配偶照顾者；以及需要制定自学计划 可以通过网络访问的网站。因此，我们建议调整我们的Success计划，以便 它可以通过网络交付。中心假设是自我护理是患者的产物， 照顾者和他们的互动，以及消除自我护理的障碍 退伍军人和他们的照顾者都是有效管理慢性病所必需的。这个 理由是，开发和测试替代的自我护理模式是必要的，以改善短期- 影响大多数退伍军人并花费退伍军人管理局费用的慢性病的长期和长期后果 数百万美元。在前人的工作和强大的理论模型的指导下，我们开发了 两个具体目标：1)为Success开发可托管的交互式用户界面 网络；2)对30名患者和30名护理人员进行了基于网络的计划的现场测试。在目标1下，我们 将与教学设计师合作并开发故事板，以最终确定内容、叙事脚本、 和超链接，以优化程序内的导航，并允许异步访问。 我们还将开发嵌入到模块中的视频小插曲，以说明 最好的学习方式是通过视觉媒介(例如，渐进式肌肉放松)。我们将进行 与10名参与者一起进行可用性测试。可用性测试的结果将用于改进 原型。在目标2下，我们将确定招聘和保留程序，评估 计划的可接受性，试点调查，并使用半 来自参与者的结构化反馈。拟议的方法是创新的，因为它寻求 利用患者及其照顾者之间现有的社会关系来加强自我护理 慢性病。这项拟议的研究意义重大，因为它利用了我们现有的 了解患者和照顾者如何促进自我护理，并形成自我护理工具 这是有效的，可接受的，在退伍军人事务部内可行的，并可用于临床护理的 退伍军人。归根结底，拥有一个有效的自我护理战略，以满足患者的需求 他们的照顾者被期望改善结果以及患者感觉到的生活质量 更健康，照顾者感觉负担更轻，关系质量得到提高。出于这些原因， 这项工作得到了我们的业务合作伙伴护理员办公室的热情支持 支持。

Self-care is critical to enhancing outcomes among chronically ill Veterans since without optimal self-care, these Veterans face poor quality of life, exacerbations, and imminent death. Existing tools designed to enhance self-care are limited because they often require in person contact, and they do not address the needs of informal caregivers who may be involved in Veteran care. The long-term goal is to improve morbidity, mortality, and patient-reported health outcomes among chronically ill Veterans by improving adherence to self-care recommendations. The objective in this study is to develop and pilot test a web-based self-care program that targets the barriers to self- care as experienced by chronically ill Veterans and their caregivers. We had originally developed SUCCEED (Self-care Using Couples Care EnhancEment in Disease), a 6 week self-care support program that was pilot tested with Veterans with chronic heart failure and their spousal caregivers. This was delivered via telephone or in-person based on participant preference with high acceptability. Lessons learned from this pilot study included the need for a non-disease focused program; the need to engage nonspousal caregivers; and the need to develop self-study programs that can be accessed via the web. Therefore, we propose to adapt our SUCCEED program so that it can be delivered over the web. The central hypothesis is that self-care is the product of patients, caregivers, and their interactions and that eliminating the barriers to self-care as experienced by both the Veteran and their caregivers is necessary to effectively manage chronic illnesses. The rationale is that developing and testing alternate models of self-care is necessary to improve short- term and long-term outcomes of chronic illnesses that impact most Veterans and costs the VA millions of dollars. Guided by previous work and a strong theoretical model, we have developed two specific aims: 1) Develop an interactive user interface for SUCCEED that can be hosted over the web; 2) Field test the web-based program with 30 patients and 30 caregivers. Under Aim 1, we will work with instructional designers and develop storyboards that finalize content, narrative script, and hyperlinks to optimize navigation within the program, and to allow for asynchronous access. We will also develop video vignettes to be embedded in the modules, to illustrate techniques that are best learned through visual media (e.g., progressive muscle relaxation). We will conduct usability testing with 10 participants. Results of the usability testing will be used to refine the prototype. Under Aim 2, we will determine recruitment and retention procedures, assess acceptability of the program, pilot surveys, and conduct a qualitative evaluation using semi- structured feedback from participants. The proposed approach is innovative, because it seeks to leverage existing social relationships between patients and their caregivers to enhance self-care of chronic illnesses. The proposed research is significant because it capitalizes on our existing understanding of how patients and caregivers contribute to self-care, and lead to a self-care tool that is effective, acceptable, feasible within the VA, and can be used in the clinical care of Veterans. Ultimately, having an effective self-care strategy that addresses the needs of patients and their caregivers is expected to improve outcomes as well as quality of life as patients feel healthier, caregivers feel less burdened, and relationship quality is enhanced. For these reasons, this work is being enthusiastically supported by our operational partner, the Office of Caregiver Support.