Anticipated Effects of Using a Poststroke Patient Portal for Stroke Survivors and Carers: Semistructured Interview Study
Journal of Medical Internet Research ·
Background: Digital technologies are increasingly incorporated into long-term self-management of health conditions, yet their social impact on stroke survivors and carers remains limited. Objective: This study explores how stroke survivors and carers view a prototype web-based application (“portal”) that allows patients to access and contribute up-to-date information about their health and care poststroke and how this might impact their self-management practices. Methods: Through 27 semistructured interviews with 21 stroke survivors and 6 informal carers (performing unpaid care work), we explore the enablers of and barriers to the adoption and use of a portal for stroke survivors. To support discussions, participants were shown images of the portal prototype that displayed various features, including a self-living ability assessment, blood pressure monitoring, and an overview of exemplar personal data. Results: Four themes were identified to articulate the anticipated effects of the portal: (1) portals as potential tools to empower through enabling survivors and carers to access stroke knowledge and enhance self-management; (2) portals as a method that could offer practical support for recovery management, therefore helping survivors manage their recovery; (3) hesitancy about using a portal, particularly regarding tracking recovery through personal data input; and (4) portals as a method to potentially share information to help keep family, friends, and wider support networks informed about their health and its management. Anticipated experiences also varied by social position. Young stroke survivors, for example, said they would value age-appropriate peer connections, while carers anticipated concerns about additional workload. Participants also felt that family members often lacked understanding of stroke impacts, suggesting that portals could help facilitate better communication about invisible and complex disabilities. Conclusions: The anticipated benefits of digital tools for empowering patients need to be weighed against the complexity of people’s health and the additional responsibility digital interventions place on carers to communicate for those with severe disabilities. Our findings suggest that for a portal to be effective, it would need to address not only people’s medical needs but also their social needs, especially their use of informal care. Further research is needed, including with an implemented portal, to understand the use of portals over extended periods.