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: 10201502
• 负责人: Veronica Yank
• 金额: $ 72.11万
• 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/10201502
• 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; Elements; Enrollment; Environment; Family member; Friends; Future; Geography; Goals; Health; Home; Home environment; 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; Reach, Effectiveness, Adoption, Implementation, and Maintenance; 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; effectiveness evaluation; effectiveness implementation study; effectiveness implementation trial; experience; group intervention; health care availability; health disparity; implementation efforts; implementation evaluation; implementation framework; 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).

项目总结 在1300万阿尔茨海默病或相关痴呆症患者的非正式照顾者中， 估计有140万人生活在美国的农村地区。这些照顾者是一个弱势群体，因为他们 身体上与世隔绝，农村地区在获得医疗保健的机会和质量方面存在着明显的差距。许多农村痴呆症患者 由于照顾责任限制了他们的能力，照顾者会经历严重的健康后果 以维持他们的照看角色。因此，迫切需要有效、可扩展和可访问的 支持农村痴呆症照顾者的方案，使他们能够维持自己的福祉和效率 在他们所爱的人的家庭环境中照顾。 在线课程为节目交付提供了一种方便且易于翻译的选择，因为它们 可由家庭环境中的护理人员在用户方便时访问。建设得更好 照顾者是一个为期6周的在线互动小组，提供自我管理、社会支持和技能建设 为阿尔茨海默病或相关形式的痴呆症患者的照顾者开发的讲习班。在我们的 在非随机研究中对该计划的评估，照顾者在 压力、抑郁症状和自我效能感，伴侣的幸福感都得到了改善。 在这些令人鼓舞的初步研究结果的基础上，我们现在建议进行一项混合效果： 实施随机对照试验，将640名农村痴呆症照顾者纳入 两组：干预组(车间)320人，注意对照组320人。照顾者将会是 通过19个社区组织招募(为17个州的农村社区服务)。主要结果将是 成为照顾者的压力和抑郁症状。我们假设压力分数和抑郁症状 干预组在12个月后较对照组有显著改善。我们还将确定 研讨会实施的主要优势(促进者)和弱点(障碍)。我们将使用RE-AIM 实施框架和混合方法，以确定相关的实施特征 无论是照顾者还是农村社区组织。 如果建立更好的照顾者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，特别是关于如何接触和有效支持孤立性痴呆症照顾者 在农村地区采取可扩展的干预措施，即使在资源匮乏的情况下也是如此。如果研讨会能够实现 它的目标是农村痴呆症护理人员，其中一些最孤立的人，预计它也将是可扩展的 在其他资源匮乏的环境中(例如，在城市或郊区环境中)。