Technology-enabled subjective wellness observations by informal caregivers: a qualitative analysis

Community-dwelling older adults often receive assistance from family, friends, and other informal caregivers (ICGs), and typically have more frequent and consistent contact with ICGs than with providers. ICGs have ample opportunity to observe the health status of their care recipient, and these observations are an underexplored information resource, potentially useful for risk assessment, prevention, and care planning. However, ICGs are often heavily burdened, and added burden from observation collection should be minimized. The frequency and content of ICG observations are not well-characterized, and methods for reliable and content-rich observation collection are underexplored. We describe data gathered from a pilot evaluation of Philips CarePartners Mobile (CPM), a smartphone application that provides communication and coordination support for a “circle” of multiple ICGs assisting an older adult. CPM includes novel features enabling ICGs to record and share semi-structured observations. A group of 43 care circles used CPM for up to 30 weeks, and contributed 51 observations. Thematic analysis of observation content and structure yielded several insights. We identify a subset of ICGs who contribute a disproportionate share of observations, and tend to contribute structured and topically-related groups of observations at once. Multiple categories of observation content were apparent, including reporting of evidence of health status, and reporting of observing notable events or performing notable actions. There was a preference for particular topics, including social health and interaction, and functional status (e.g. performance of daily activities). While further research is needed, we demonstrate that relevant information can be collected from ICG observation.