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，非正式协商是一个社会过程， 一个以上的照顾者，特别是老年痴呆症患者。从历史上看， 重点关注个人主要照顾者的心理和身体健康和福祉， 普遍忽视了社会背景下发生的，如互动的作用， 多个照顾者我们最近的一项研究评估了非正式协商的范围和潜在影响， 使用以自我为中心的社交网络方法为痴呆症患者（PWD）建立网络，即，一个基于 线人的观点，揭示了有复杂的群体动力学和护理分配 网络的多个成员之间的活动，包括财务义务。我们还了解到， 护理者的结果（例如，经济困难）和残疾人（例如，住院）可通过 网络特性和动态。社交网络方法与以下现象非常一致： PWD的非正式解释，因为它解释了社交网络的群体动态，并有助于解释这种 网络特征影响成员的行为和幸福感。然而，为了广泛使用 网络评估在研究和实践设置，一个可靠的和易于使用的评估工具， 这是必要的，但目前没有这样的工具。为了响应RFA AG-23-002，我们建议开发CareNet， 一个交互式数字工具，带有嵌入式访谈/调查，供应商可以轻松部署， 研究人员充分表征PWD的网络。我们将采用迭代的以用户为中心的设计 方法，涉及关键利益攸关方（即，护理人员、医疗保健和社会服务提供者，以及 研究人员），以优化设计和内容考虑。在第一阶段，我们将对不同的人进行采访， 非正式照顾者评估他们的需要和对从多个家庭中脱离出来的意义的看法， 观点，这将为我们以自我为中心的网络调查的适应提供信息，以更好地反映 多元文化的融合。在第二阶段，我们将与 主要利益攸关方参与者，然后在受控的观察环境中进行试点测试。最后，在第三阶段， 我们将对CareNet进行实地测试，以评估其在提供者和 研究人员与护理人员互动以收集网络数据。我们将改进特性和功能 预计将在实践环境中进行大规模的实用性测试和未来的应用。最后，完全 功能CareNet将促进提供者在实践中和广泛地进行系统的网络评估 使用社会网络分析来表征未来研究者对PWD的非正式诊断， 非正式协商的经验知识。

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.