Evaluating the Effectiveness of an Online Small-Group Self-Management Workshop for Rural Caregivers of Individuals with Alzheimer Disease and Related Dementias

评估针对阿尔茨海默病和相关痴呆症患者的农村护理人员的在线小组自我管理研讨会的有效性

• 批准号: 9789138
• 负责人: Veronica Yank
• 金额: $ 76.72万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-09-30 至 2023-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9789138
• 关键词: Adult; Alzheimer' s Disease; Alzheimer' s disease related dementia; Appointment; Behavior; Caregiver Burden; Caregivers; Caring; Characteristics; Clinical effectiveness; Communities; Control Groups; Data; Dementia; Dementia caregivers; Educational workshop; Effectiveness; Elements; Enrollment; Environment; Evaluation; Family member; Friends; Future; Geography; Goals; Health; Home environment; Hybrids; Impaired cognition; Individual; International; Intervention; Interview; Mental Depression; Methods; Midwestern United States; Outcome; Participant; Patient Care; Patient Self-Report; Pattern; Personal Satisfaction; Persons; Population; Program Accessibility; Program Evaluation; Randomized; Randomized Controlled Trials; Research; Research Design; Resources; Role; Rural; Rural Community; Sampling; Self Efficacy; Self Management; Social Interaction; Social support; Standardization; Stress; Surveys; Telephone; Testing; Time; Translations; Vulnerable Populations; attentional control; base; care recipients; caregiver interventions; caregiving; clinical implementation; community organizations; dementia caregiving; depressive symptoms; design; experience; group intervention; health care availability; health disparity; implementation trial; improved; informal caregiver; loved ones; peer; primary outcome; programs; recruit; rural America; rural area; rural disparities; rural setting; self-management program; skills; stress symptom; suburb; theories; uptake

PROJECT SUMMARY Among 13 million informal caregivers of individuals with Alzheimer's disease or related dementias, an estimated 1.4 million live in rural areas of the US. These caregivers are a vulnerable group due to their physical isolation and well-documented rural disparities in health care access and quality. Many rural dementia caregivers experience serious health consequences due to caregiving responsibilities that can limit their ability to maintain their caregiving role. Thus, there is an pressing need for effective, scalable, and accessible programs to support rural dementia caregivers so that they can sustain their own well-being and effective caregiving within the home environments of their loved ones. Online programs offer a convenient and readily translatable option for program delivery because they can be accessed by caregivers in the home environment and at the convenience of the user. Building Better Caregivers is an online 6-week, interactive, small-group self-management, social support, and skills-building workshop developed for caregivers of individuals with Alzheimer's disease or related forms of dementia. In our evaluations of the program in non-randomized studies, caregivers experienced significant improvements in stress, depression symptoms, and self-efficacy and partners experienced improved well-being. Building on these encouraging preliminary findings, we now propose to conduct a hybrid effectiveness- implementation randomized controlled trial that will enroll and randomize 640 rural dementia caregivers into two groups: 320 in the intervention (workshop) group and 320 in the attention control group. Caregivers will be recruited through 19 community organizations (serving rural communities in 17 states). Primary outcomes will be caregiver stress and depression symptoms. We hypothesize that stress scores and depression symptoms will be significantly improved at 12 months in the intervention group versus control group. We will also identify key strengths (facilitators) and weaknesses (barriers) of workshop implementation. We will use the RE-AIM implementation framework and a mixed methods approach to identify implementation characteristics pertinent to both caregivers and rural community organizations. If the Building Better Caregivers workshop is proven to be effective, this research has the potential to open new research horizons, particularly on how to reach and effectively support isolated dementia caregivers in rural areas with an intervention that is scalable, even in low-resourced settings. If the workshop can achieve its goals with rural dementia caregivers, some of those most isolated, it would also be expected to be scalable in other low-resourced settings (e.g., in urban or suburban environments).

项目概要 在 1300 万阿尔茨海默病或相关痴呆症患者的非正式护理人员中， 据估计，有 140 万人生活在美国农村地区。这些看护者是弱势群体，因为他们 物理隔离以及有据可查的农村地区在医疗保健获取和质量方面的差异。不少农村痴呆 由于护理责任可能限制护理人员的能力，护理人员会遭受严重的健康后果 以维持他们的照顾角色。因此，迫切需要有效的、可扩展的和可访问的 支持农村痴呆症护理人员的计划，使他们能够维持自己的福祉和有效 在亲人的家庭环境中提供护理。 在线课程为课程交付提供了方便且易于翻译的选项，因为它们 护理人员可以在家庭环境中并在用户方便的时候访问。建设更好 看护者是一个为期 6 周的在线、互动、小组自我管理、社会支持和技能培养项目 为阿尔茨海默病或相关痴呆症患者的护理人员举办的研讨会。在我们的 在非随机研究中对该计划的评估显示，护理人员在以下方面经历了显着改善： 压力、抑郁症状和自我效能感以及伴侣的幸福感得到改善。 基于这些令人鼓舞的初步发现，我们现在建议进行混合有效性- 实施随机对照试验，将招募 640 名农村痴呆症护理人员并随机分组 两组：干预（研讨会）组 320 人，注意力对照组 320 人。护理人员将 通过 19 个社区组织招募（为 17 个州的农村社区提供服务）。主要成果将 是照顾者的压力和抑郁症状。我们假设压力分数和抑郁症状 与对照组相比，干预组在 12 个月时将得到显着改善。我们还将确定 研讨会实施的主要优势（促进因素）和劣势（障碍）。我们将使用 RE-AIM 实施框架和混合方法来确定相关的实施特征 照顾者和农村社区组织。 如果建设更好的护理人员研讨会被证明是有效的，这项研究有可能 开辟新的研究视野，特别是如何接触和有效支持孤立的痴呆症护理人员 在农村地区采取可扩展的干预措施，即使在资源匮乏的地区也是如此。如果工作坊能够达到 其目标是针对农村痴呆症护理人员（其中一些是最孤立的护理人员），预计该项目也将具有可扩展性 在其他资源匮乏的环境中（例如，在城市或郊区环境中）。