Perceived usefulness of a shared journal feature to support coordination and communication across dementia care networks

Abstract

AbstractBackgroundCare partners (family and friends) for people living with Alzheimer’s Disease and related dementias (ADRD) often provide care within a care network of both informal (e.g. family, friends) and formal (e.g. home aides, respite care) supports. Care networks can improve care but are often associated with increased communication and coordination demands. Technology interventions have potential to support care networks, but evidence is limited. This study explored care network use of a shared communication platform to identify care partner’s perceptions of the platform’s usefulness.MethodThis study used data from a feasibility trial for CareVirtue, a web application designed to support care partners in storing and sharing information with members of their network. Fifty‐one care networks comprised of a primary care partner and other network members (N = 61) in California and Wisconsin used CareVirtue for 60 days and completed a post‐trial semi‐structured interview. This analysis focused on CareVirtue’s journal feature, which allows users to share daily experiences through written posts published to a newsfeed that care network members can view and comment on. We exported the text of these journal entries and conducted team‐based content analysis. We performed a thematic analysis on interview transcripts to identify themes related to the journal’s usefulness.ResultIn total 2,535 journal entries from 51 primary care partners (75% female, mean age = 60 years old, 55% children of care recipient, 40% spouses) and their care network were analyzed.Journal entries: We identified four categories of communication and coordination activities: 1) information acquisition in which care network members sought updates; 2) information sharing including tracking behaviors, symptoms, and daily activities; 3) strategy development in which care network members used two‐way communication to co‐create care solutions; and 4) feedback including affirmation, empathy, gratitude, confirmation, and information exchange.Interviews: We identified three journal usefulness themes: individual level usefulness including tracking information and therapeutic benefits; network level usefulness including facilitating collaboration; and relational usefulness including increased situational awareness and feeling seen as a care partner.ConclusionThe CareVirtue journal facilitated communication across the care network and also enabled self‐exploration, heightened awareness, and collaborative strategy development among the care network.