JMIR Publications

ABSTRACT

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 web-based application (‘portal’) that allows patients to access and contribute up-to-date information about their health and care post-stroke, and how this might impact their self-management practices.

Methods:

Through 27 semi-structured interviews with stroke survivors (n=21) and carers (n=6), we explore the enablers and barriers to the adoption and utility of a portal for stroke survivors. Through a thematic analysis, four themes were revealed (i), portals as empowering through improved stroke knowledge and enhanced self-management; (ii), burdens of portal use, particularly for carers concerned about additional responsibilities; (iii), hesitancy about portal use, especially with regards to data tracking recovery; (iv), community building and connection with others experiencing similar post-stroke issues.

Results:

These findings recognise how social positions shape digital health experiences. Young stroke survivors sought age-appropriate peer connections, while carers worried about additional workload. Family members often lacked understanding of stroke impacts, suggesting portals could facilitate better communication about invisible and complex disabilities.

Conclusions:

These insights inform patient-centred digital health design, emphasising the need for meaningful support rather than simply digitising existing data and services.