Social media and other computer-mediated communication (CMC) platforms are ubiquitous parts of everyday life and have radically altered how we work, live, and build and maintain social networks. CMC includes any form of web-based communication, which may be synchronous (eg, video conferencing platforms) or asynchronous (eg, web-based messaging) and may involve the exchange of text, audio, or video messages for professional or social purposes. Within this realm, more than 3 billion people worldwide use social media platforms, such as Facebook, Twitter, and Instagram [1]. Users on social media may participate actively by broadcasting personal or nonpersonal information and providing feedback on others’ posts, or they may participate passively by observing information posted by others [2-5]. Depending on how they use social media, individuals may derive different benefits. For example, social media users may derive greater social capital (or value from web-based relationships) if they use social media for active communication, have a diverse web-based network, and increase web-based social connectedness [6].

For many individuals with disabilities, social media platforms have the potential to overcome existing barriers to social participation [7]. For example, individuals with reduced or limited mobility may be able to engage in social activities where in-person attendance is prohibitive. There have also been increasing calls to foster social media accessibility for those with sensory differences. For instance, it has become more common to add alternative text to images on social media platforms to reduce participation barriers for individuals with certain visual disabilities [8]. These efforts have allowed many individuals with motor and sensory disabilities to increase participation in this ubiquitous part of daily modern social life.

Adolescents and adults with traumatic brain injury (TBI) often report being socially isolated [9] and could benefit from social media participation. However, many of these individuals have cognitive disabilities that may affect social media use. Individuals with TBI may experience changes in memory, social perception, and social communication [10] and thus may find it more challenging to perceive text-based social cues in social media than cues present in face-to-face communication [11,12]. TBI-related memory and learning disabilities may make it difficult to keep up with evolving requirements of regularly updating social media platforms [3], and reduced attention may create challenges parsing critical information from cluttered news feeds [13].

Tailored adaptations may allow individuals with cognitive disabilities to access and benefit from social media more easily. However, adaptations for individuals with motor and sensory disabilities have not been paralleled by advances that address barriers to social media participation for individuals with cognitive disabilities [3,14], such as those experienced by many individuals with TBI. Given that participation in social media platforms is a critical part of day-to-day social communication for many adults, increasing access to CMC and social media platforms may hold significant promise for increasing overall social participation for individuals with TBI [2,3,13].

It is critical to understand how TBI-related cognitive and communication challenges affect access to and use of social media, so we can design apps that support access for all. For example, TBI may affect overall access, such that individuals with TBI are less likely to use social media than noninjured peers. Alternatively, it may be that individuals with TBI use social media at similar rates to noninjured peers but do not reap the same social benefits because of challenges with cognition and communication. Thus, the first step in developing tools that will increase social media success in individuals with TBI is to gather more information about how individuals with TBI use social media and how brain injury affects social media use.

There is an emerging body of research directed at understanding social media use in individuals with TBI. Perhaps consistent with the fact that current social media platforms are not designed with individuals with cognitive disabilities in mind, adults in the chronic phase of TBI report using social media less frequently than noninjured peers [3] and indicate that they face significant challenges with accessibility and usability [15,16]. Baker-Sparr et al [3] surveyed a large cohort of individuals with chronic TBI (n=337) on whether and how they use the internet and found that although the proportion of internet users with TBI was high (250/337, 74.1%), it was significantly lower than general population estimates of internet usage (84%) [17]. In this survey, 14.8% (37/250) of individuals with TBI reported that brain injury had somewhat affected their ability to use the internet, listing memory problems, visual challenges, and difficulty with attention as barriers [3].

Consistent with these responses, other work by Ketchum et al [18] has shown a positive association between social internet use and in-person social participation in individuals with TBI, suggesting that individuals with TBI are not likely to use social media as an alternative to social communication. Instead, they may face many of the same barriers and facilitators on the web as they do in person.

Brunner et al [13] interviewed 13 adults in the chronic phase after an acquired brain injury (traumatic or nontraumatic) about their use of social media. Facebook was the most popular social media platform among interviewees (consistent with Baker-Sparr et al [3]), followed by Twitter and Instagram. Most participants reported that they had help setting up their social media accounts and that they use social media more than once a day. All participants stated that they were motivated to use social media to stay connected with others, and some (2/13, 15% of interviewees) reported using social media to help other people with brain injury. Some participants reported feeling overwhelmed or confused by social media, and those who felt confused by a given platform were likely to give up using it [13].

Our study extends previous work in several ways. First, we examined patterns of social media use in adults with TBI and a demographically matched comparison group. The use of a matched comparison group allows us to understand how patterns may differ between individuals with and without a history of TBI who are similar in demographic variables that may affect CMC use (eg, age and education). Second, we asked specific questions about how usage has changed as a result of TBI, rather than just if usage has changed, and solicit direct suggestions for improving social media technology support for individuals with TBI. Asking individuals with TBI for specific input on improving social media participation aligns with national and international priorities for TBI rehabilitation research that includes patient-reported outcomes to support health and independence [19]. This study is, to our knowledge, the first in-depth survey of social media use of individuals with TBI and matched peers in the United States and has a larger sample size than previous interview-based studies, allowing us to combine breadth and depth in understanding patterns of social media use after brain injury. Together, these study characteristics increase experimental rigor and expand our knowledge on how individuals with TBI use social media, if and how their use of social media has changed following their brain injury, and the nature of the barriers they face.

This study had three specific aims: (1) to characterize how and why adults with TBI use social media and CMC platforms, (2) to evaluate changes in CMC after brain injury, and (3) to elicit suggestions from individuals with TBI to improve access to social media after injury.

Participants (or respondents) were 53 individuals with moderate-to-severe TBI (28 women) and 51 noninjured comparison (NC) participants (29 women). All participants were recruited from Nashville, Tennessee, United States, and the surrounding areas, and the groups were demographically matched for age and education. The mean age was 37.7 years (SD 9.6) for the TBI group and 36.4 years (SD 10.4) for the NC group, with no significant between-group difference (t₁₀₂=0.685; P=.50). The mean years of education were 15.0 (SD 2.6) for respondents with TBI and 15.1 (SD 2.1) for the NC group, with no significant between-group difference (t₁₀₂=0.581; P=.56).

Individuals with TBI were recruited through the Vanderbilt Brain Injury Patient Registry and had no self-reported preinjury history of neurological or cognitive disability. All individuals with TBI were in the chronic phase of injury (>6 months postonset, mean time since onset 74.1 months, SD 66.0) and sustained their injuries as adults. Injury-related information was obtained from medical records and semistructured participant interviews. Injury etiologies included motor vehicle accidents (n=27), falls (n=10), being struck by a vehicle as a pedestrian (n=4), motorcycle or snowmobile accidents (n=3), nonmotorized vehicle accidents (eg, biking, n=3), assault (n=3), and being struck by a moving object (n=3). TBI severity was determined using the Mayo Classification System [20], so injuries were moderate-to-severe if at least one of the following criteria were met: (1) Glasgow Coma Scale score <13 within 24 hours of acute care admission, (2) positive neuroimaging findings (acute computed tomography findings or lesions visible on chronic magnetic resonance imaging), (3) loss of consciousness >30 minutes, or (4) posttraumatic amnesia >24 hours.

NC participants were recruited from the NC participant pool in the Vanderbilt Brain Injury Patient Registry and had no self-reported history of neurological or cognitive disability.

The data reported here are part of a larger survey examining different aspects of social media use for individuals with TBI. For all participants, the survey included questions about social media platform use, activities on social media, types and quality of relationships with social media friends, and perceived benefits and drawbacks of using social media. Participants with TBI also answered questions about how social media use has changed since injury, provided suggestions for researchers and clinicians interested in decreasing barriers and supporting social media use, and responded to mockups of potential Facebook modifications.

In designing the survey, we designated some questions to focus specifically on Facebook usage because we anticipated high usage of Facebook across both groups based on national data [1] and previous work on social media in TBI [3,13]. We sought to acquire additional information about how and why individuals with TBI use Facebook to guide the future design of technology-based aids around the Facebook platform, given its high usage among individuals with TBI.

Here, we focus on questions related to our goals in characterizing social media use in TBI, assessing postinjury differences in CMC, and describing barriers to social media use for individuals with TBI. We included items from the Social Networking Usage Questionnaire [21] to assess participants’ activities on social media. We also included questions from an analysis of Facebook friend networks [22] to evaluate participants’ web-based social networks and from an assessment of web-based social capital formation [6] to assess how individuals with and without TBI use social media in passive and active ways. Items from these scales are presented in the Results section. Some of these items were modified for participants with TBI. For example, we added TBI-related examples to tailor questions about social media advocacy and groups. In addition, we collapsed response options on the web-based social capital formation scale [6] from five items (almost never, rarely, sometimes, almost every day, and multiple times a day) to three items (never or almost never, sometimes, and often) to reduce the cognitive load on respondents, given the survey’s overall length. As we did not intend to directly compare these responses with results from previous studies, modifying established scales maintained a connection to how social media use is studied by field experts while remaining feasible for participants with TBI.

The procedures for this study were approved by the Human Research Protections Program at Vanderbilt University. Participants received a link to complete the survey on the web via REDCap (Research Electronic Data Capture) [23]. All participants completed the survey between June and September 2020. The survey consisted of up to 280 questions (a mix of multiple-choice and free response), but in this study, we focus on 15 questions relevant to social media usage and changes in usage related to TBI (Multimedia Appendix 1). In some cases, questions only appeared if respondents had previously selected a given response. For example, individuals only described their participation frequency for the social media platforms they reported using. The survey took approximately 30 to 45 minutes for the NC participants to complete. As participants with TBI responded to more questions, they received links to take the survey in two parts, lasting approximately 30 minutes each.

The goal of this study was to explore how and why individuals with and without a history of TBI use social media and CMC platforms as well as existing barriers to social media use for individuals with TBI. Consistent with this exploratory goal, we used descriptive statistics, expecting that the data would serve as the foundation for future hypothesis-driven research on technology-based social media interventions for individuals with TBI [24].

The survey provided several opportunities to add information via free-text responses to open-ended questions, and we have reported these responses descriptively. Although it is important to not overinterpret those responses (as we did not understand the forces that caused only some individuals to respond to these questions), we included them because they could generate and refine questions for future research [24].

Responding to individual questions was voluntary, and some questions only appeared via branching logic, depending on previous responses. Therefore, not all participants answered all questions. The number of individuals who responded to a given question is listed in parentheses. Response percentages for each group are listed for multiple-choice questions; proportions are not listed for free-text responses. On some questions, respondents could choose more than one option, so the total percentages reported for those questions may exceed 100%.

Overall, 96% (51/53) of participants with TBI and 98% (50/51) of NC participants reported that they currently hold an account on at least one CMC platform. Participants frequently used more than one platform, with participants with TBI holding an account on an average of 5.66 (SD 3.26) platforms and NC participants holding an account on an average of 7.49 (SD 3.57) platforms.

Table 1 provides the proportion of participants in each group, reporting that they use certain platforms. Facebook was the most popular platform for both groups (TBI: 41/51, 80%; NC: 43/50, 86%). Facebook Messenger came next for participants with TBI, followed by Instagram, FaceTime, and Snapchat. Twitter was popular with NC participants (23/50, 46%), although it was not used by as many participants with TBI (13/51, 26%). Participants with TBI reported lower rates of usage for LinkedIn (TBI: 19/51, 37%; NC: 29/50, 58%) and Pinterest (TBI: 16/51, 31%; NC: 23/50, 46%) as well as other videoconferencing platforms, such as Zoom (TBI: 19/51, 37%; NC: 31/50, 62%) and Skype (TBI: 13/51, 26%; NC: 24/50, 48%).

Participants could also include, in free-text form, the names of platforms they use that were not on the survey list. A total of five platforms were reported: GroupMe, Amazon Show, WebEx for participants with TBI, and Kik and Slack for NC participants.

We asked the participants to indicate how often they used platforms where they had an account. Table 2 provides the frequency of use of platforms used by at least 25% of participants with TBI. The full table, including all platforms, is available in Multimedia Appendix 1.

We asked participants if there were any social media platforms where they would like to have an account but do not currently. A total of 4% (2/52) of participants with TBI reported wanting to use LinkedIn, TikTok, and Tinder. A total of 8% (4/51) of NC participants reported that they would like to have accounts on Facebook, Reddit, Snapchat, TikTok, Tumblr, and Twitter. In a separate question, we asked participants to explain why they did not use these platforms. The participant with TBI who responded to this question stated, “I don’t like the way I communicate on them. I don’t like the way I obsess over how often I am on them.” A total of 2 NC participants also noted that time is a factor in not setting up additional social media accounts.

We asked participants who do not have a Facebook account to explain via free text why they do not use the platform. Participants with TBI stated that they were concerned about the nature of information available on Facebook (eg, falsehoods, n=3) or that they found Facebook to be “toxic” or “superficial” (n=2). One participant with TBI stated a preference for in-person communication, “I like eye contact, and raw emotion, not emojis.” The most frequent reason NC participants gave for not using Facebook was that they found it unnecessary or a waste of time (n=3).

We asked participants about how they use social media with options adapted from the Social Networking Usage Questionnaire [21]. Table 3 provides social media activities endorsed by participants with TBI and NC participants. Participants with TBI reported numerically less frequently than NC participants that they use social media to keep up with friends and family (TBI: 44/52, 85%; NC: 49/50, 98%) or to obtain information regarding social events (ie, to use CMC for relationships and events happening beyond social media; TBI: 24/52, 46%; NC: 33/50, 66%). Participants with TBI also reported numerically less frequently than NC participants that they use social media to obtain information (eg, to discover new things, TBI: 26/52, 50%; NC: 36/50, 72%; to follow current events, TBI: 25/52, 48%; NC: 28/50, 56%) or to post about their daily lives (TBI: 19/52, 37%; NC: 25/50, 50%).

For those individuals who reported having a Facebook account (42 participants with TBI and 43 NC participants), we asked questions about their specific use of the platform. First, we asked them what kinds of friends they have on Facebook (options adapted from a study by Manago et al [22]; Table 4). Both groups most frequently reported being Facebook friends with close friends and family members. Participants with TBI reported numerically less frequently than NC participants that they were Facebook friends with acquaintances, coworkers, people they had met once, or people they casually dated.

We asked participants questions from a scale on social capital building [6] to assess how they use Facebook actively (eg, creating their own posts), passively (eg, looking through the newsfeed), for social searching (eg, actively searching for and adding friends) and browsing (eg, looking at others’ profiles but not adding them as friends), and for private communication (Table 5). Participants with and without a history of TBI reported more frequently that they use Facebook passively than actively. Although not by large numerical differences, participants with TBI reported more frequently, in general, than NC participants that they use Facebook for social browsing (eg, browsing through others’ profiles) and social searching (eg, looking for new friends to add).

We asked participants with TBI whether their use of social media has changed because of the injury, and 23% (12/53) responded affirmatively. Next, we asked 12 participants to describe the changes via free text. A total of 5 participants reported that they spend more time on social media than before their injuries, whereas 2 participants reported spending less. A total of 2 participants stated that they now use social media to keep up with TBI-related groups. Another 2 participants endorsed being more careful in their use of social media (ie, whom they follow). Some participants stated that using social media has become harder postinjury (because of sensitivity to light or screens: n=1; increased stress: n=1; or feelings of insecurity: n=1), but one participant noted that social media is helpful in managing a memory deficit.

We also asked participants with TBI to provide suggestions for researchers and clinicians interested in improving the experience of using social media for individuals with TBI, and 32% (17/53) of participants provided free-text suggestions. Some participants worried that social media may be detrimental for people with TBI (n=3) or noted that clinicians should discourage overuse (n=2). In contrast, other participants (n=2) noted that social media may be helpful for individuals with TBI, particularly for learning and social interactions that feel less stressful than face-to-face communication. Other participants suggested reducing “extra content” (eg, advertisements and recommended posts, n=2), which can feel overwhelming, or increasing provider presence on social media (eg, via support groups, n=2).

This study represents a critical step in developing technology-based social media interventions for individuals with TBI, as stakeholders should have a guiding voice in rehabilitation research [19]. Here, individuals with TBI exhibited social media usage patterns that are broadly similar to noninjured peers, with limited exceptions. However, a proportion of respondents identified barriers that affect their social media use. In the context of designing social media interventions, these findings raise the question of whether individuals with TBI receive the same benefits from social media use as noninjured peers. For example, it is possible that some individuals with TBI do not explore or interact with social media in the same way as their peers. It may be challenging to sample or recall information from visually complex, dynamic displays or to read and broadcast appropriate web-based social cues in a way that increases broader social capital. Future work should assess this open question to determine the critical places for technology-based interventions for social media use in TBI.

Evaluating the effectiveness of an intervention should consider not only communication success but also the accessibility, usefulness, and acceptance of that intervention for individuals with TBI [36]. As technology support is more likely to create meaningful positive changes when in regular use, it is critical to solicit and follow the guidance of individuals with TBI when considering where and how interventions can support successful social media use.

The results of this study provide a snapshot of how individuals with TBI use social media and their priorities for potential social media–based interventions. As we administered our survey on the web, all participants in this study had regular access to email, and thus, our sample may not be fully representative of the spectrum of internet use in TBI. Here, we present descriptive data that may form the foundation for future hypothesis-driven intervention research in this area [24]. Our participants provided initial responses as to how we might improve social media support for individuals with TBI, but further studies may build on these results to request feedback on specific intervention options. Additional studies with larger sample sizes will also allow for informed hypotheses and direct statistical tests of between-group differences in social media use.

Consistent with previous work [2,3,13], cognitive disabilities may add to the social media maze for some individuals with TBI, and designing supports that mitigate these challenges may increase web-based and real-world social participation. Although it is possible that only a subset of individuals with TBI would benefit from technology-based social media support, to the extent that social participation on the web helps to reduce the physical and psychological burdens of loneliness, developing such interventions is warranted. As technology evolves, the principles of these interventions should be well-defined, evidence-based, and generalizable beyond a single platform. They should also reflect the priorities and input of individuals with TBI [19,36]. Furthermore, given the heterogeneity of social media patterns in this sample, interventions should be easily tailored to a given individual. By considering CMC as part of an individual’s broader social health, we stand to alter web-based participation in a way that is meaningful, positive, and beneficial to broader social life.