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).

项目摘要 在患有阿尔茨海默氏病或​​相关痴呆症患者的1300万非正式护理人员中 估计有140万居住在美国的农村地区。这些护理人员是一个脆弱的群体 身体隔离和有据可查的卫生保健访问和质量的农村差异。许多农村痴呆症 护理人员由于护理责任而遭受严重的健康后果，可能会限制其能力 保持护理角色。因此，迫切需要有效，可扩展且可访问 支持农村痴呆症护理人员的计划，以便他们可以维持自己的福祉和有效 在亲人的家庭环境中照料。 在线程序为程序提供方便且易于翻译的选项，因为他们 护理人员可以在家庭环境中并在用户方便的情况下访问。建造更好 护理人员是一个在线6周，互动，小组的自我管理，社会支持和技能建设 为患有阿尔茨海默氏病或​​痴呆症相关形式的患者的护理人员开发的研讨会。在我们的 该计划在非随机研究中的评估，看护人在 压力，抑郁症状和自我效能感和伴侣经历了改善的幸福感。 在这些令人鼓舞的初步发现的基础上，我们现在建议进行混合有效性 - 实施随机对照试验将将640个农村痴呆症护理人员纳入和随机分配给 两组：干预组（研讨会）组320，注意控制组中有320组。护理人员会 通过19个社区组织招募（在17个州为农村社区提供服务）。主要结果将 是护理人员的压力和抑郁症状。我们假设压力得分和抑郁症状 干预组与对照组的12个月时，将在12个月时显着改善。我们还将确定 研讨会实施的关键优势（促进者）和弱点（障碍）。我们将使用re-aim 实施框架和一种混合方法来识别实现特征相关的实现特征 给护理人员和农村社区组织。 如果证明建筑物更好的护理人员研讨会是有效的，那么这项研究有可能 开放新的研究视野，尤其是关于如何达到和有效支持孤立痴呆症护理人员 在农村地区，即使在低资源的环境中，也具有可扩展的干预措施。如果讲习班可以实现 它的目标是农村痴呆症护理人员（其中一些最孤立的人），也有望扩展 在其他低资源的环境中（例如，在城市或郊区环境中）。