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

摘要 越来越多的文献表明，非正式照顾是一个社会过程，通常涉及 不止一个照顾者，尤其是患有痴呆症的老年人。从历史上看，照料研究 一直关注个人主要照顾者的心理社会和身体健康和福祉，并 普遍忽视了照料发生的社会背景，例如 多个照顾者。我们最近评估非正式照料的范围和潜在影响的研究 使用自我中心社会网络方法的痴呆症患者网络(PWD)，即基于 从举报人的角度来看，有复杂的群体动态和护理分配 网络的多个成员之间的活动，包括财务义务。我们还了解到， 照顾者的结果(例如，经济困难)和残疾(例如，住院)可能会被以下因素抵消 网络特征和动态。社交网络方法与以下现象非常一致 对残障人士的非正式照顾，因为它解释了社交网络的群体动态，并帮助解释了这种情况 网络特征影响着成员的行为和幸福感。然而，对于照看的广泛使用 网络评估在研究和实践环境中，一个可靠和易于使用的评估工具将是 这是必要的，但目前还没有这样的工具。响应RFA AG-23-002，我们建议开发CareNet， 带有嵌入式访谈/调查的交互式数字工具，提供商和 研究人员对残障人士的护理网络进行了全面的描述。我们将采用以用户为中心的迭代设计 方法，涉及主要利益攸关方(即照顾者、医疗保健和社会服务提供者以及 研究人员)优化设计和内容考虑。在第一阶段，我们将与不同的 非正式照顾者，评估他们的需求和对来自多个国家的护理意义的看法 观点，这将为我们以自我为中心的照料网络调查提供信息，以更好地反映 照顾的多元文化。在第二阶段，我们将与 关键利益攸关方参与者随后在受控的观察性环境中进行试点测试。最后，在第三阶段， 我们将对CareNet进行现场测试，以评估供应商和 研究人员与照顾者互动，收集照顾者网络数据。我们将完善特性和功能 预计将在实践环境中对实用程序和未来的应用程序进行大规模测试。我们最后的，完全的 Function CareNet将在实践和广泛的范围内推动提供者进行系统的护理网络评估 使用社会网络分析来表征未来研究人员对残疾患者的非正式照顾以扩展 非正式照料的经验性知识。

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.