JMIR Publications

ABSTRACT

Background:

A critical gap in our knowledge about social media is whether we can alleviate accessibility barriers and challenges for individuals with traumatic brain injury (TBI), to improve their social participation and health. Studies of social media use after TBI are largely based on retrospective reflection or analysis of content posted in the past.

Objective:

The aim of the present study was to characterize the ways people with TBI accessed and used social media websites, and understand unique challenges they faced

Methods:

We invited eight adults with TBI to log onto their own Facebook page and use it as they regularly would while “thinking aloud”. Their comments were recorded and transcribed using a framework developed to classify the primary reasons adults use social media. An open coding method was also used to analyze participant utterances to develop an understanding of the challenges individuals with TBI encounter while using Facebook. We first analyzed participants’ utterances using a framework proposed by Meshi and colleagues to classify adults’ motives for accessing social media. We next used an open coding method to understand the challenges that people with TBI faced while using Facebook.

Results:

Participants used all categories of codes in the Meshi et al. framework, evidenced by their comments and actions during the study, and also provided detailed feedback about the Facebook user interface. The a priori coding also revealed two dimensions that characterized participants’ Facebook use. The first dimension was whether they were active or passive about posting and self-disclosure on Facebook. The second dimension was familiarity and fluency in using Facebook. The open-coding analysis revealed six major types of challenges reported by participants with TBI, these included, difficulty with language production and interpretation, attention and information overload, negativity and emotional contagion, insufficient guide to use FB, online scams and frauds, and general accessibility concerns.

Conclusions:

Results showed that individuals with TBI used Facebook for the same reasons typical adults do, suggesting that it can help increase social communication and reduce isolation and loneliness. Participants also identified significant barriers, and we propose modifications that could improve access for individuals with brain injury. Based on the identified functions and challenges, we conclude by proposing design ideas for social media support tools that can promote more active use of social media sites by adults with TBI.