Online Community Support for Stroke Survivors and Caregivers: Scoping Review

Previous studies found that online communities are critical in supporting stroke survivors and caregivers for stroke recovery. However, it is unclear how such online communities are designed, or could be designed.

This review aims to identify the key design elements of an online community to support stroke survivors and caregivers, that is, the actors, types of community support, and supporting technologies.

We used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) guidelines. We included journal articles related to online community support for stroke. Editorials, registers, opinion pieces, letters, and conference papers were excluded. Online databases PubMed/MEDLINE, Scopus, Web of Science, ScienceDirect, and ProQuest were searched for articles published from January 2015 to June 2025. Articles were screened based on the title, abstract, and full text using Covidence software. After screening and full-text review, we read the selected articles in detail to analyze and synthesize information on key actors, types of support, and technologies used to support stroke survivors and caregivers.

A total of 77 articles were included. These articles discussed digital support technologies (52 articles), community functions and roles (18 articles), online stroke community systems (6 articles), and the stroke ecosystem (1 article). Our review found that the online community of support for stroke survivors and caregivers includes the caregivers themselves (46 articles), health workers (24 articles), and the local community/society (14 articles). Online communities mainly provide informational support, including giving advice (28 articles) and tangible aids (29 articles), followed by social support to create a sense of belonging (26 articles). Technologies discussed included mobile health (25 articles), web-based systems (12 articles), virtual/augmented reality (8 articles), sensors/wearable technology (8 articles), video-guided exercise apps (4 articles), and telehealth/telerehabilitation/teleconsultation/telestroke (4 articles). Only one examined how cultural differences influence technology.

Although technologies are essential in online communities of support for stroke survivors and caregivers, this review shows a lack of studies that analyze the use and role of technologies in such online communities. This could be because the key actors of the online communities are the caregivers, who mainly seek social support and therefore do not require sophisticated technology. Nevertheless, technologies such as telerehabilitation and video-guided exercise apps could be important for other actors, including the local community and health workers, to enable them to support stroke survivors and their caregivers.