Objectives: To characterize Internet and social media use among adults with moderate to severe traumatic brain injury (TBI) and to compare demographic and socioeconomic factors associated with Internet use between those with and without TBI.
Setting: Ten Traumatic Brain Injury Model Systems centers.
Participants: Persons with moderate to severe TBI (N = 337) enrolled in the TBI Model Systems National Database and eligible for follow-up from April 1, 2014, to March 31, 2015.
Design: Prospective cross-sectional observational cohort study.
Main Measures: Internet usage survey.
Results: The proportion of Internet users with TBI was high (74%) but significantly lower than those in the general population (84%). Smartphones were the most prevalent means of Internet access for persons with TBI. The majority of Internet users with TBI had a profile account on a social networking site (79%), with more than half of the sample reporting multiplatform use of 2 or more social networking sites.
Conclusion: Despite the prevalence of Internet use among persons with TBI, technological disparities remain in comparison with the general population. The extent of social media use among persons with TBI demonstrates the potential of these platforms for social engagement and other purposes. However, further research examining the quality of online activities and identifying potential risk factors of problematic use is recommended.
THE INTERNET AND SOCIAL MEDIA are dominant forces in our lives in this Age of Information. Time spent on the Internet continues to grow steadily in the United States and worldwide, with mobile technology and social media driving much of the expansion.1 , 2 Social media tools, including social networking sites (SNSs) (eg, Facebook), blogs (eg, Tumblr), online content communities (eg, YouTube), and online forums (eg, Google Hangouts), encourage multidimensional communication where users can exchange information, connect to resources, and create social networks based on common interests.3 Such platforms can facilitate opportunities that would otherwise be limited by various barriers. Not only have the Internet and social media transformed the ways that we seek and gather information but they also appear to be changing the perception of communication and of what constitutes social support. For example, among college students, large and seemingly impersonal networks of Facebook friends are associated with greater perceived social support than smaller ones and expressing one’s feelings to such large networks may serve important needs for an evolving type of intimacy.4
People with disabilities may encounter obstacles to keeping up with these social trends and enjoying their advantages. A Pew survey5 in 2011 revealed that Americans with disabilities are less likely to use the Internet than their able-bodied counterparts (54% vs 81%). This remained true even after controlling for factors such as lower income, lower education, and older age. Moreover, people with disabilities were less likely to use online access methods such as broadband service and mobile devices, both of which are advantageous for seeking work, finding health information, and communicating remotely with others. Lack of experience with these technologies creates a vicious cycle, as less experience predicts less favorable outcome in studies using Web-based platforms to help mitigate the effects of disability.6 All of these trends are unfortunate, considering that the Internet and social media may be seen as electronic curb cuts7—resources to help offset the reduced mobility and social isolation that affect many people with disabilities.
Reduced social network size and loneliness are particularly common for persons with traumatic brain injury (TBI).8–11 Social networking through the Internet has the potential to alleviate this isolation. However, cognitive impairments typical after TBI9 , 11 (eg, impaired memory, attention, and organization) may pose an obstacle to learning and utilizing rapidly changing technology. There have been recent studies exploring the use of mobile technology to help people with acquired brain injury compensate for cognitive impairments12–14 and caregivers for such individuals to utilize online resources for support.15 , 16 A few studies have attempted to directly teach Internet access17 or use of social media18 to people with TBI. Others have surveyed people with TBI on their habitual use of the Internet19 or Facebook.20 Such studies quickly become outdated and difficult to generalize as new technologies and online trends emerge. As a result, there is an ongoing need for updated information regarding the use of online technology after TBI that can guide future efforts to narrow the “disability divide,”21 encourage Internet-based social participation, and develop online interventions to facilitate these novel forms of interaction.
In this study, we interviewed a large cohort of people at least 1 year after moderate or severe TBI to examine the current level of online activity among these individuals. Our aims were (1) to examine various aspects of Internet use among adults with TBI, particularly focusing on activities involving communication and social participation through social media platforms; and (2) to compare certain online activities, as well as demographic and socioeconomic factors associated with Internet use, between those with and without TBI, the latter based on published surveys of the general population.22 […]