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

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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.