Measuring Caregiver Networks of Older Adults with Alzheimer's Disease

测量患有阿尔茨海默病的老年人的护理人员网络

• 批准号: 10728621
• 负责人: Michelle Birkett
• 金额: $ 80.88万
• 依托单位: NORTHWESTERN UNIVERSITY AT CHICAGO
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-08-01 至 2028-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10728621
• 关键词: Affect; Alzheimer' s Disease; Alzheimer' s disease caregiver; Alzheimer' s disease related dementia; Anxiety; Businesses; Caregiver research; Caregiver support; Caregiver well-being; Caregivers; Caring; Communication; Communities; Computer software; Conflict (Psychology); Consent; Data; Dementia; Elderly; Enrollment; Ethnic Origin; Family Caregiver; Family member; Friends; Funding; Goals; HIV; Health system; Heterogeneity; Home; Individual; Interpersonal Relations; Interview; Lesbian Gay Bisexual Transgender Queer; Life; Location; Maps; Measurement; Measures; Methodology; Methods; Observational Study; Outcome Measure; Patient-Focused Outcomes; Patients; Persons; Physicians' Offices; Population Heterogeneity; Research; Research Personnel; Rural; Schools; Site; Social Network; Social support; Stress; System; Trust; United States National Institutes of Health; caregiving; cohort; emotional distress; expectation; experience; member; novel; open source; primary caregiver; psychologic; public health relevance; racial diversity; recruit

The overall goal of this proposal is to use a social network measurement methodology (Network Canvas) to capture expanded definitions of family caregivers related to people living with Alzheimer’s disease and related dementias (AD/ADRD), with special focus on positive/negative relationship aspects. This proposed methodology will advance PWD-caregiver dyad research to encompass measuring real-world PWD-caregiver networks. Among people living with Alzheimer’s disease (PWD), there is a significant population heterogeneity in how individuals define “family” caregivers. Most studies concentrate on the caregiver-PWD dyad with one singular primary caregiver. This dyad approach may not be represent real-life, since multiple family members and friends support the care of PWD. Multiple caregivers may also have differing ideas of obligation, expectations of care, and positive/negative aspects of care. Our prior research has shown that interactions between caregivers can be positive (e.g., teamwork to convince PWD to accept help) or negative (e.g., conflicts causing emotional distress). There is a lack of research on how these interpersonal interactions can be measured on a network level. To mitigate these relationship measurement gaps, our team has built a free, open-source, NIH funded software suite for researchers called Network Canvas, that identifies and maps social network data. We aim to: Aim 1. Measure and map the social network of caregivers of PWD using the Network Canvass methodology, to examine the population heterogeneity in how individuals define “family” caregivers. Aim 2. Measure network predictors of positive wellbeing for caregivers and PWD. We will conduct a large multi-site (IL, IN, HI) study of 200 PWD caregiver networks (up to 1000 people) - using snowball recruitment to identify/interview members of the networks – and the Network Canvas methodology. Recruitment will be through interdisciplinary community partners, physician offices, and ongoing NIH- funded cohorts - representing rural/urban, ethnic/racially diverse, LGBTQ groups. We anticipate multiple tiers of PWD-Caregiver networks: 1.) consentable PWD (mild, moderate AD) with caregivers, 2.) Caregivers only (PWD with severe dementia/unable to consent), 3.) consentable PWD only, no caregivers (un-befriended). Mixed method interviews will examine detailed patient-centered outcome measures, interpersonal interactions (positive/negative), and effects of the networks on the individual. Through this research, we plan to have a 1.) Better understanding of how to measure caregiver networks, 2.) Identify which aspects of caregiver networks are most predictive of the impact on psychological and physical well-being of caregivers and PWD, and 3.) Operationalize a network measurement approach to understand caregiver systems that will be shareable with other researchers to provide larger benefit for the caregiver-PWD research community.

该建议的总体目标是使用社交网络测量方法（网络帆布） 捕获与患有阿尔茨海默氏病的人有关的家庭护理人员的扩展定义 和相关的痴呆症（AD/ADRD），特别关注正/负相关方面。这 提出的方法学将推动PWD-Careiver Dyad研究以涵盖测量现实世界 PWD养护者网络。在患有阿尔茨海默氏病（PWD）的人们中，有重要的 个人如何定义“家庭”护理人员的种群异质性。大多数研究集中于 Caregiver-PWD二元组，带有一个单数初级护理人员。这种二元方法可能不会代表 现实生活，因为多个家庭成员和朋友支持PWD的照顾。多个护理人员可以 也有不同的目标观念，护理期望以及护理的积极/负面方面。我们的 先前的研究表明，照顾者之间的互动可能是积极的（例如，团队合作 说服PWD接受帮助）或负面（例如，冲突导致情绪困扰）。缺乏 关于如何在网络级别上测量这些人际交互的研究。减轻 这些关系测量差距，我们的团队建立了一个免费的开源，NIH资助的软件 研究人员的套件称为网络帆布，可以识别和地图社交网络数据。我们的目标是： 目的1。使用网络画布来衡量和映射PWD护理人员的社交网络 方法论，以研究个人如何定义“家庭”照顾者的种群异质性。 目标2。测量护理人员和PWD积极健康的网络预测指标。我们将进行 大型多站点（IL，IN，HI）研究200个PWD护理人员网络（多达1000人） - 使用雪球 招募网络和网络帆布方法的招聘。 招聘将通过跨学科的社区合作伙伴，实体办公室和正在进行的NIH- 资助的队列 - 代表农村/城市，种族/种族潜水员，LGBTQ群体。我们期待 PWD养护者网络的多个层次：1。）同意的PWD（轻度，中等广告），护理人员， 2.）仅护理人员（患有严重痴呆/无法同意的PWD），3。）仅同意PWD，否 照料者（未交友）。混合方法访谈将检查以患者为中心的详细结果 度量，人际交往（正/负）以及网络对个人的影响。 通过这项研究，我们计划有一个1.）更好地了解如何衡量护理人员 网络，2。）确定护理人员网络的哪些方面最可预测对影响的影响 护理人员和PWD的心理和身体健康以及3.）操作网络 理解护理人员系统的测量方法，这些方法将与其他人共享 研究人员为Caregiver-PWD研究社区提供更大的好处。