Story-Call: E-Mobile Support for Community Dementia Caregivers

故事征集：为社区痴呆症护理人员提供电子移动支持

• 批准号: 9927489
• 负责人: CHARLENE A. POPE
• 金额: --
• 依托单位: RALPH H JOHNSON VA MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-01-01 至 2019-01-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9927489
• 关键词: Absenteeism; Alzheimer' s Disease; American; Archives; Area; Businesses; Car Phone; Caregiver Burden; Caregiver research; Caregiver support; Caregiver well-being; Caregivers; Caring; Chronic; Chronic Disease; Communities; Community Services; Cost of Illness; Crossover Design; Data; Data Analyses; Dementia; Dementia caregivers; Diagnosis; Educational process of instructing; Elements; Evaluation; Feasibility Studies; Feedback; Focus Groups; Future; Home environment; Institution; Institutionalization; Internet; Intervention; Interview; Knowledge; Left; Measures; Mental Depression; Methods; Minority; Outcome; Outcome Measure; Parents; Participant; Perception; Personal Satisfaction; Persons; Phase; Pre-Post Tests; Problem Solving; Process; Provider; Quality of life; Randomized; Randomized Controlled Trials; Records; Research Project Grants; Research Proposals; Resources; Rural; Schedule; Services; Social support; Spouses; Support Groups; Surveys; Technology; Telephone; Testing; Time; Training; Transcend; Veterans; Waiting Lists; Work; base; cohort; community based service; constructivism; cost; dementia care; design; effective intervention; falls; follow-up; health literacy; improved; informal caregiver; innovation; mHealth; mobile computing; patient home care; primary outcome; programs; racial and ethnic; racial difference; recruit; response; rurality; satisfaction; social; success; theories; trend

DESCRIPTION (provided by applicant): Anticipated Impact for Veterans: Alzheimer's disease and the isolation it produces imposes a heavy burden on informal caregivers (CG) of Veterans who are persons with dementia (PWD); caregiver research indicates that dementia CG carry greater burden than for other chronic diseases. The proposed Story-Call intervention will deliver personalized problem-solving support in the form of story-telling to expand the reach of VA support resources via a mobile phone application (APP) to caregivers of community-dwelling Veterans who are PWD. The expected outcomes will examine if CGs find that the APP-recorded stories decrease perceived CG burden and increase social support as efficacy, while confirming feasibility in recruitment, acceptability, practicality, increased adaptation to dementia care, and use of community resources. Background: Support programs promoting CG involvement can significantly delay Veteran institutionalization as can increased community engagement and early use of community-based services. Interventions reducing CG stress and other burdens can increase CG quality of life and can decrease costs of the disease. However, not all CG reach out to community and nationally-available resources, keyed to issues of work, time, culture, or rurality. Mobile technology allows providers to reach people who may be isolated and need social support. Project Objectives: Aim 1: Quantitative: In a feasibilty study of a randomized controlled trial, assign two cohorts to use the APP to record and rate stories, complete validated pre-/post-tests, and select from the APP's expanded responses [cases (n=40)] or to receive Internet-delivered informational materials including short vignettes and a follow-up phone call [control (n=40)] to measure differences in CG burden as a primary outcome, and involvement, social support, dementia knowledge, and satisfaction with APP use for trends. Aim 2: Qualitative: Using constructivist grounded theory, categorize themes from stories and in 2 phases collect: 1) perceptions from follow-up phone interviews with CG participants; and 2) focus groups with Advisory Group and VA stakeholders as a process evaluation of APP appeal, use, impact, and cultural tailoring. Aim 3: Mixed Methods Analysis: In the tradition of a fully integrated mixed methods study, integrate the parallel quantitative and qualitative findings to evaluate the potential feasibility elements of acceptability, demand, implementation, practicality, adaptation, integration, expansion, and limited efficacy of Story-Call in its potential to improve CG burden and suggest directions for a future randomized controlled trial across the VISN Methods: Our initially-targeted audience consists of working caregivers, particularly minority and rural caregivers, who may have less time and opportunity for more traditional, scheduled group support and teaching interventions. Using a wait-listed, within/between subjects pre-/post-design, this proposed mixed methods study will use the mobile APP to enhance the well-being of all VA CG, particularly minority working CG. It is expected to decrease perceived CG burden, increase use of community services, and potentially decrease CG costs through delay in institutionalization. Building on story-telling interventions effective in other chronic diseases, his feasibilty study proposes Story-Call as a newly-developed mobile phone application that records, archives, and presents 30/60-second videos by caregivers and professionals, who share brief stories about how they have handled common dementia home-care situations, such as "She wants to go home!" In preliminary data, our successful proof-of-concept study of the technology demonstrated that brief training enabled four working CG to access our application on the mobile phone, to record their own success stories about caring for a spouse/parent, to view and rate others' stories and to offer additional responses as a way to decrease CG burden and enhance CG well-being. Brief interviews and test scores identified high satisfaction with the APP intervention, and suggested that measuring outcomes via the APP for caregiver burden will be possible. We propose this feasibility study to establish the basis for future testing and implementation.

描述(由申请人提供)： 对退伍军人的预期影响：阿尔茨海默氏症及其造成的隔离给患有痴呆症(PWD)的退伍军人的非正式照顾者(CG)带来了沉重的负担；照顾者研究表明，痴呆症CG比其他慢性病的负担更大。拟议的Story-Call干预将以讲故事的形式提供个性化的问题解决支持，以通过移动电话应用程序(APP)将退伍军人支持资源的覆盖范围扩大到社区居住的残疾退伍军人的照顾者。预期结果将检查CGs是否发现APP记录的故事减少了感知的CG负担，增加了社会支持作为有效性，同时确认了招募的可行性、可接受性、实用性、对痴呆症护理的更多适应以及社区资源的使用。背景：促进CG参与的支持计划可以显著推迟退伍军人制度化，增加社区参与和早期使用基于社区的服务也是如此。减少CG压力和其他负担的干预措施可以提高CG的生活质量，并可以降低疾病的成本。然而，并不是所有的CG都接触到社区和全国可用的资源，关键是工作、时间、文化或乡村问题。移动技术使提供商能够接触到可能与世隔绝、需要社会支持的人。项目目标：目标1：定量：在一项随机对照试验的可行性研究中，分配两个队列，使用APP记录和评分故事，完成经过验证的前/后测试，并从APP的扩展响应[案例(n=40)]中进行选择，或者接受互联网传递的信息材料，包括简短的插曲和后续电话[对照(n=40)]，以衡量作为主要结果的CG负担、参与度、社会支持、痴呆症知识和对APP使用趋势的满意度的差异。目标2：定性：使用建构主义扎根理论，从故事中对主题进行分类，并分两个阶段收集：1)对CG参与者进行后续电话采访的感知；2)咨询小组和退伍军人利益相关者的焦点小组，作为对应用程序的吸引力、使用、影响和文化剪裁的过程评估。目的3：混合方法分析：在完全整合的混合方法研究的传统中，结合平行的定量和定性研究结果，评估Story-Call在改善CG负担方面的潜在可行性因素，包括可接受性、需求、实施、实用性、适应性、整合、扩展和有限的有效性，并为未来VISN方法的随机对照试验提出方向：我们最初的目标受众包括工作的照顾者，特别是少数民族和农村照顾者，他们可能没有太多的时间和机会进行更传统的、预定的团体支持和教学干预。这项拟议的混合方法研究将使用移动应用程序，在设计前/设计后的受试者内部/之间进行等待名单，以提高所有退伍军人儿童，特别是少数工作儿童的幸福感。预计这将减少感知的CG负担，增加对社区服务的使用，并可能通过延迟制度化来降低CG成本。在对其他慢性病有效的讲故事干预的基础上，他的可行性研究建议将Story-Call作为一种新开发的手机应用程序，记录、存档并呈现照顾者和专业人员30/60秒的视频，他们分享了他们如何处理常见的痴呆症家庭护理情况的简短故事，例如“她想回家！”在初步数据中，我们对该技术的成功概念验证研究表明，简短的培训使四名工作CG能够在手机上访问我们的应用程序，记录他们自己关于照顾配偶/父母的成功故事，查看和评价其他人的故事，并提供额外的回应，作为减轻CG负担和提高CG福祉的一种方式。简短的采访和测试分数表明，人们对APP干预的满意度很高，并建议通过APP衡量照顾者负担的结果将是可能的。我们提出这项可行性研究，为未来的测试和实施奠定基础。