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

自我护理对于提高慢性病退伍军人的预后至关重要，因为没有最佳的治疗方案， 自我保健，这些退伍军人面临生活质量差，病情加重和即将死亡。现有 旨在加强自我保健的工具是有限的，因为它们往往需要亲自接触， 他们没有解决可能参与退伍军人护理的非正式护理人员的需求。的 长期目标是改善发病率、死亡率和患者报告的健康结果， 慢性病退伍军人通过提高坚持自我保健的建议。在这方面的目标 研究是开发和试点测试一个基于网络的自我保健计划，目标是自我保健的障碍， 护理经验的慢性病退伍军人和他们的照顾者。我们最初开发了 SUCCEED（使用夫妇护理增强疾病的自我护理），为期6周的自我护理支持 该项目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。 这是通过电话或亲自根据参与者的偏好提供的， 可接受性从这一试点研究中吸取的经验教训包括， 计划;需要从事非配偶照顾者;以及需要制定自学计划 可以通过网络访问。因此，我们建议调整我们的成功计划， 它可以通过网络传送。核心假设是自我护理是患者的产物， 照顾者，以及他们的互动，消除自我照顾的障碍， 退伍军人和他们的照顾者是必要的，以有效地管理慢性疾病。的 基本原理是，开发和测试自我护理的替代模型是必要的，以改善短期- 慢性疾病的长期和长期结果，影响大多数退伍军人和成本的VA 几百万美元。在以前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SUCCEED开发一个交互式用户界面， 2）现场测试基于网络的程序与30名患者和30名护理人员。根据目标1，我们 将与教学设计师和开发故事板，最终确定内容，叙事脚本， 和超链接来优化程序内的导航，并允许异步访问。 我们还将开发嵌入模块中的视频短片，以说明 最好通过视觉媒体学习（例如，渐进性肌肉松弛）。我们会进行 10名参与者的可用性测试。可用性测试的结果将用于完善 样机根据目标2，我们将确定招聘和保留程序，评估 该计划的可接受性，试点调查，并进行定性评估，使用半 参与者的结构化反馈。拟议的办法是创新的，因为它力求 利用患者及其护理人员之间的现有社会关系， 慢性病拟议的研究是重要的，因为它利用了我们现有的 了解患者和护理人员如何有助于自我护理，并导致自我护理工具 在VA内有效、可接受、可行，并可用于以下患者的临床护理 老兵最终，拥有一个有效的自我护理策略，满足患者的需求 他们的护理人员有望改善患者的治疗结果和生活质量， 更健康，照顾者感到负担更轻，关系质量得到提高。由于这些原因， 这项工作得到了我们的业务合作伙伴--护理者办公室的热情支持 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.