JMIR Publications

ABSTRACT

Background:

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.

Objective:

This review aims to identify the key design elements of an online community to support stroke survivors and caregivers, i.e., the stakeholders, types of community support, and supporting technologies.

Methods:

We used preferred reporting items for systematic reviews and meta-analyses extension for scoping reviews (PRISMA-ScR). We chose online databases PUBMED/MEDLINE, Scopus, and Sciencedirect to search the articles. We searched for articles related to stroke and the online health community. After screening and filtering, we read 68 articles in detail for analysis and synthesis.

Results:

Our review found that the key stakeholders in an online community of support for stroke survivors and caregivers are the caregivers themselves (55 articles), local community/society (53 articles), and health workers (44 articles). Only one article mentioned the funders and policy makers as key stakeholders. Online communities mainly provide network/social support to create a sense of belonging (37 articles), followed by informational support including giving advice (26 articles). Most articles did not mention the technology aspect. The few articles that mentioned the technology aspect wrote about mobile health (17 articles), web-based systems (10 articles), virtual/augmented reality (9 articles), sensors/wearable technology (8 articles), telehealth/telerehabilitation/teleconsultation/telestroke (7 articles), and video-guided exercise app (4 articles). These articles however did not explain how these technologies support the online communities to support the stroke survivors and caregivers.

Conclusions:

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