CareNet, An Interactive Digital Tool to Assess Informal Caregiving Networks of Older Adults with Dementia

CareNet，一种交互式数字工具，用于评估患有痴呆症的老年人的非正式护理网络

• 批准号: 10893774
• 负责人: ANNETTE J DE VITO DABBS
• 金额: $ 72.46万
• 依托单位: EMORY UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-01 至 2025-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10893774
• 关键词: Affect; Alzheimer' s disease related dementia; Assessment tool; Behavior; Black race; Caregiver well-being; Caregivers; Caring; Characteristics; Communication; Community Healthcare; Complex; Computer software; Data; Data Analyses; Data Collection; Decision Making; Dementia; Dementia caregivers; Elderly; Evaluation; Family Sizes; Family member; Financial Hardship; Friends; Future; Health; Health Services; Home; Hospitalization; Household and Family; Individual; Intervention; Interview; Knowledge; Literature; Long-Term Care; Maps; Methods; Monitor; Outcome; Participant; Pathway Analysis; Personal Satisfaction; Persons; Pharmaceutical Preparations; Phase; Play; Policies; Process; Property; Provider; Public Health; Research; Research Personnel; Risk; Role; Sampling; Self Management; Series; Social Environment; Social Network; Social Work; Software Tools; Structure; Subgroup; Summary Reports; Surveys; Telephone; Testing; Training; Vertebral column; Visualization; Work; care systems; caregiving; caregiving research; cohesion; dementia caregiving; design; digital; digital healthcare; digital tool; field study; health care service; improved; in-home care; informal caregiver; informal caregiving; informant; iterative design; learning outcome; member; multiple chronic conditions; physical conditioning; pilot test; practical application; practice setting; preference; primary caregiver; prototype; psychosocial; response; service providers; social; social structure; tool; usability; user centered design

ABSTRACT A growing body of literature demonstrates that informal caregiving is a social process and commonly involves more than a single caregiver especially for older adults with dementia. Historically, caregiving research has been focused on the psychosocial and physical health and wellbeing of the individual primary caregiver and has generally overlooked the social contexts in which caregiving occurs, such as the role of interactions among multiple caregivers. Our recent study to evaluate the scope and potential impact of informal caregiving networks for persons with dementia (PWD) using an egocentric social network approach, i.e., one based on the informant's perspective, has revealed that there are complex group dynamics and allocation of care activities, including financial obligation, among multiple members of the network. We also learned that the outcomes of caregivers (e.g., financial hardship) and PWD (e.g., hospital admissions) may be offset by network characteristics and dynamics. The social network approach is well aligned with the phenomenon of informal caregiving for PWD as it accounts for group dynamics of a social network and helps explain how such network characteristics affect members' behaviors and well-being. However, for widespread use of caregiving network assessment in both research and practice settings, a reliable and easy-to-use assessment tool will be necessary, but no such tools currently exist. In response to RFA AG-23-002, we propose to develop CareNet, an interactive digital tool with an embedded interview/survey, that will be easily deployed by providers and researchers to fully characterize a PWD's caregiving network. We will employ an iterative user-centered design approach, involving key stakeholders (i.e., caregivers, healthcare and social service providers, and researchers) to optimize design and content considerations. In Phase 1, we will conduct interviews with diverse informal caregivers to assess their needs and views about the meaning of caregiving from multiple perspectives, which will inform adaptation of our egocentric caregiving network survey to better reflect the pluralistic culture of caregiving. In Phase 2, we will conduct a series of usability evaluation sessions with the key stakeholder participants followed by pilot-testing in a controlled, observational setting. Finally, in Phase 3, we will field-test CareNet to evaluate usability and acceptability in field settings in which providers and researchers interact with a caregiver to collect caregiving network data. We will refine features and functionality in anticipation of large-scale testing of utility and future applications in practice settings. Our final, fully functional CareNet will promote systematic caregiving network assessment by providers in practice and wide use of social network analysis for characterizing informal caregiving of PWD by future investigators to expand the empirical knowledge of informal caregiving.

抽象的 越来越多的文献表明非正式护理是一个社会过程，通常涉及 不仅仅是一个护理人员，尤其是对于痴呆症的老年人。从历史上看，护理研究已经 专注于个人主要护理人员的心理和身体健康以及 一般忽略了照料发生的社会背景，例如 多个护理人员。我们最近评估非正式护理的范围和潜在影响的研究 使用以自我为中心的社交网络方法的痴呆症患者（PWD）的网络，即基于 线人的观点表明，有复杂的群体动态和护理分配 网络多个成员之间的活动，包括财务义务。我们还了解到 护理人员的成果（例如，财务困难）和PWD（例如，医院入院）可能会被抵消 网络特征和动态。社交网络方法与 PWD的非正式护理对社交网络的群体动态说明，并有助于解释如何这样 网络特征会影响成员的行为和福祉。但是，为了广泛使用护理 在研究和实践环境中，网络评估，可靠且易于使用的评估工具将是 必要，但是目前没有此类工具。为了响应RFA AG-23-002，我们建议开发货物， 带有嵌入式访谈/调查的交互式数字工具，提供者和 研究人员充分表征了PWD的护理网络。我们将采用以用户为中心的迭代设计 方法，涉及主要利益相关者（即护理人员，医疗保健和社会服务提供者，以及 研究人员）以优化设计和内容注意事项。在第1阶段，我们将与不同的采访 非正式的护理人员评估他们的需求和观点 观点，这将为我们的以自我为中心的护理网络调查提供信息，以更好地反映 护理的多元文化。在第2阶段，我们将与 主要利益相关者参与者，然后在受控的，观察的环境中进行试点测试。最后，在第3阶段， 我们将进行现场测试列表，以评估提供商和在其中的现场设置中的可用性和可接受性 研究人员与护理人员进行互动以收集护理网络数据。我们将完善功能和功能 预计在实践环境中对公用事业和未来应用的大规模测试。我们的决赛充分 功能性货物将促进提供商在实践中的系统护理网络评估 使用社交网络分析来表征未来研究者对PWD的非正式护理以扩展 非正式护理的经验知识。