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.

该提案的总体目标是使用社交网络测量方法（Network Canvas） 获取与阿尔茨海默病患者相关的家庭护理人员的扩展定义 和相关痴呆症（AD/ADRD），特别关注积极/消极关系方面。 拟议的方法将推进残疾人与护理人员的二元研究，以涵盖测量现实世界 阿尔茨海默病 (PWD) 患者中存在着重要的残障人士护理人员网络。 大多数研究集中在个体如何定义“家庭”照顾者方面的群体异质性。 照顾者-残疾人二人组，只有一名主要照顾者 这种二人组方法可能不具有代表性。 现实生活中，因为多个家庭成员和朋友可能支持照顾残疾人。 对义务、护理期望以及护理的积极/消极方面也有不同的看法。 先前的研究表明，护理人员之间的互动可以是积极的（例如，团队合作 缺乏接受帮助）或消极（例如说服、冲突导致情绪困扰）。 关于如何在网络层面上衡量这些人际互动的研究以减轻影响。 这些关系测量差距，我们的团队构建了一个免费、开源、NIH 资助的软件 名为 Network Canvas 的研究人员套件，用于识别和映射社交网络数据。我们的目标是： 目标 1. 使用 Network Canvass 测量和绘制残疾人护理人员的社交网络 方法，检查个体如何定义“家庭”照顾者的群体异质性。 目标 2. 衡量护理人员和残疾人积极健康的网络预测因素 我们将开展一项研究。 对 200 个残疾人护理人员网络（最多 1000 人）进行的大型多站点（伊利诺伊州、印第安纳州、夏威夷州）研究 - 使用雪球 招募以确定/采访网络成员 - 以及网络画布方法。 招募将通过跨学科社区合作伙伴、医生办公室和正在进行的 NIH- 资助群体——代表农村/城市、民族/种族多元化、LGBTQ 群体。 多层次的残疾人-看护者网络：1.) 与看护者同意的残疾人（轻度、中度 AD）， 2.) 仅限看护者（患有严重痴呆/无法同意的残疾人），3.) 仅限同意的残疾人，否 护理人员（未成为朋友）。混合方法访谈将检查以患者为中心的详细结果。 措施、人际互动（积极/消极）以及网络对个人的影响。 通过这项研究，我们计划 1.) 更好地了解如何衡量护理人员 网络，2.) 确定看护者网络的哪些方面最能预测对患者的影响 照顾者和残疾人的心理和身体健康，以及 3.) 运营网络 用于了解可与其他人共享的护理人员系统的测量方法 研究人员为护理人员-残疾人研究界提供更大的利益。