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Internet and Social Media Use After Traumatic Brain Injury

A Traumatic Brain Injury Model Systems Study

Baker-Sparr, Christina MS; Hart, Tessa PhD; Bergquist, Thomas PhD, ABPP; Bogner, Jennifer PhD; Dreer, Laura PhD; Juengst, Shannon PhD; Mellick, David MA; O'Neil-Pirozzi, Therese M. ScD; Sander, Angelle M. PhD; Whiteneck, Gale G. PhD

The Journal of Head Trauma Rehabilitation: January/February 2018 - Volume 33 - Issue 1 - p E9–E17
doi: 10.1097/HTR.0000000000000305
Original Articles
Free

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.

Craig Hospital, Englewood, Colorado (Ms Baker-Sparr, Mr Mellick, and Dr Whiteneck); Moss Rehabilitation Research Institute, Elkins Park, Pennsylvania (Dr Hart); Mayo Clinic College of Medicine, Rochester, Minnesota (Dr Bergquist); Department of Physical Medicine and Rehabilitation, Ohio State University, Columbus (Dr Bogner); Department of Physical Medicine and Rehabilitation, University of Alabama, Birmingham (Dr Dreer); Department of Physical Medicine and Rehabilitation, University of Pittsburgh, Pittsburgh, Pennsylvania (Dr Juengst); Spaulding Rehabilitation Hospital, Harvard Medical School, Boston, Massachusetts (Dr O'Neil-Pirozzi); Department of Communication Sciences and Disorders, Northeastern University, Boston, Massachusetts (Dr O'Neil-Pirozzi); and TIRR Memorial Hermann, and Harris Health System, Baylor College of Medicine, Houston, Texas (Dr Sander).

Corresponding Author: Christina Baker-Sparr, MS, Craig Hospital, 3425 S. Clarkson St, Englewood, CO 80113 (cbaker-sparr@craighospital.org).

This work was supported by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) grants 90DP0028, 90DP0030, 90DP0034, 90DP0037, 90DP0040, 90DP0041, H133A120085, and H133A120096. Public data set provided by the Pew Research Center. Pew Research bears no responsibility for interpretations presented or conclusions reached on the basis of analysis of the data. The authors express appreciation to the data collection personnel who interviewed participants at each collaborating site.

The authors declare no conflicts of interest.

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

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METHODS

Participants

Participants were a subset of persons with moderate to severe TBI enrolled in the Traumatic Brain Injury Model Systems (TBIMS) National Database, which is funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). Inclusion criteria for the TBIMS National Database define TBI as damage to brain tissue caused by an external mechanical force as evidenced either by medically documented loss of consciousness or posttraumatic amnesia or by objective neurologic findings on examination of physical or mental status attributed to the brain injury. Persons meeting this and other acute care criteria23 are included for enrollment. Participation in the TBIMS National Database study involves prospective follow-up interviews at 1, 2, and 5 years postinjury and every 5-year interval thereafter. For the present study, eligible individuals were TBIMS National Database participants enrolled by any of the 10 TBIMS centers prospectively conducting the Internet use survey, who were due for a routine follow-up during a 1-year data collection period from April 1, 2014, to March 31, 2015. Individuals who were non-English speaking, lost to follow-up during the data collection period (including expired and incarcerated cases), or had a proxy complete their follow-up interview were ineligible to participate. A total sample of 530 participants was determined on the basis of the calculation for any population parameter to be reported with 95% confidence24 while also accounting for the estimated number of cases potentially excluded because of deaths, incarcerations, and proxy interviews for the given period. Each TBIMS center was assigned consecutive cases due for follow-up to minimize selection bias of respondents.

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Measures

Demographics

Demographic variables assessed at the time of follow-up included age, gender, race/ethnicity, residence status, community type, education, employment status, and total family income for the previous year. Age was recorded as a categorical variable and grouped as 18 to 29, 30 to 49, 50 to 64, and 65+ years. Race/ethnicity was dichotomized as white and nonwhite, whereas current residence was categorized as private residence and other (eg, adult home, nursing home). Education was categorized as less than 12th grade, high school diploma or GED, some college, and college degree, which included bachelor's degree and higher. Employment status included employed, unemployed, student, retired, and other (eg, homemakers, volunteers). Total family income was grouped as less than $25 000, $25 000 to $49 999, $50 000 to $99 999, and greater than $100 000.

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Injury characteristics

Various injury characteristics were included for analysis. Cause of injury was coded as vehicular, violence, falls, and other (eg, sports-related injuries, hit by falling or flying objects). Co-occurring spinal cord injury was coded as “yes” or “no.” Time to follow commands was calculated as the number of days from injury to the first day the individual followed simple motor commands 2 out of 2 times within a 24-hour period.25 Duration of posttraumatic amnesia was calculated as days from injury until 2 consecutive Galveston Orientation and Amnesia Test scores above 76, Orientation-Log scores above 25, or other criteria defined by the TBIMS25 were obtained.

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Internet usage

An Internet usage survey (available from the first author) was developed for this study. Topic areas were generated on the basis of previously published studies exploring Internet use and interest in persons with TBI19,20,26 and on general population surveys concerning Internet usage.27–30 Survey items covered the following key domains: types of online activity; use of social media (including size of online community and intensity of use); modes of access; frequency and patterns of usage; barriers to online accessibility; assistive devices and compensatory strategies to facilitate online accessibility; and factors that prevent or deter nonusers from engaging in online activity. The final survey included not only items adapted from general population surveys to allow for comparison with normative data but also new items generated by experts in TBI. Suitability of items for persons with TBI was assessed via cognitive interviews conducted with 10 persons with TBI in Denver, Colorado. The survey items were clarified, condensed, and reorganized on the basis of feedback from the interviewees and were then rereviewed by the investigators before finalizing the survey.

To measure the extent of social media use, the survey included the Facebook Intensity Scale (FBI), an 8-item questionnaire developed to assess extent of engagement with Facebook.27 It contains questions on the total number of Facebook friends, minutes per day spent on Facebook, and 6 Likert scale questions assessing emotional connectedness with Facebook (Cronbach α = 0.83). In this study, FBI items were modified to apply to the respondent's most visited SNS for cases where Facebook was not that site.

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Procedure

The Internet usage survey was administered immediately following completion of routine TBIMS follow-up or at another scheduled time within 1 month following the TBIMS interview. While some TBIMS follow-up data can be collected from the best available source (either the person with TBI or a proxy), the Internet survey was only administered when the follow-up interview was completed by the individual with TBI. Trained research assistants at each of the 10 centers administered the survey, which was conducted via telephone, in person, or by mail. In light of rapid changes in technology and technology usage, all data collection was conducted within a 1-year span. Institutional review board approval for this study was obtained at each participating center.

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Data analysis

Internet users were identified as participants who reported recent Internet or e-mail use; otherwise, they were classified as nonusers. Users were then grouped into usage groups based on the total reported number of hours spent online in a typical day. Participants were classified as low users (<1 hour of use per day), medium users (1-2 hours of use per day), or high users (≥3 hours of use per day). These ranges were determined to obtain similarly sized subgroups. Descriptive statistics (proportions, cross-tabulations, means, and standard deviations) were calculated, and possible statistically significant differences among user subgroups were assessed using the χ2 test for categorical variables and analysis of variance for continuous variables. Selected demographic factors were compared between Internet users and nonusers with TBI, as well as between Internet users in the TBI sample and the general population, using χ2 tests. For comparison of demographic variables between the present study's TBI cohort and the general population, a public data set regarding Internet use was obtained from a Pew Research Center population survey administered in January 2014 to a nationally representative sample22 and weighted to correct known demographic discrepancies. All analyses were conducted using SPSS (version 23; SPSS Inc, Chicago, Illinois).

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RESULTS

Among 530 TBIMS individuals due for follow-up within the selected year, 21 had expired, 7 did not speak English, and 6 were incarcerated and could not be interviewed. Sixty-six follow-up interviews were completed by proxy and thus were not eligible for the Internet survey. In addition, 81 were lost to follow-up, 5 refused the Internet survey, and 6 had withdrawn from the TBIMS National Database. This left 338 cases with completed Internet surveys. Of these, 93% were conducted by phone, 5% in person, and 2% by mail. One case was excluded from analysis because of missing data. Among the 337 remaining respondents, 87 (26%) were classified as nonusers of the Internet whereas 250 (74%) were classified as Internet users. On the basis of their extent of use, 103 individuals (30%) were classified as low users, 70 (21%) as medium users, and 77 (23%) as high users.

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Demographics and injury characteristics

Demographic and injury severity characteristics are presented in Table 1 for all 4 Internet use groups. Age, community type, education, employment status, and total family income were all significantly associated with Internet usage, whereas years since injury, race, and gender did not significantly vary among Internet use groups. As shown in Table 1, particularly high proportions of individuals with TBI who were 65+ years old and those who were retired were nonusers, as well as those who lived in either rural or urban areas, had no more than a high school education, or reported an annual family income less than $25 000 per year. Conversely, high users included high proportions of individuals younger than 50 years, those who lived in the suburbs, those who had at least a college degree, and those who were employed. However, nearly a third of unemployed adults with TBI were also considered high users. Older adults who used the Internet did so less frequently than those younger than 65 years. Other than cause of injury, there were no significant differences in injury characteristics between the nonuser and user groups, including time since injury and injury severity. Both falls and vehicular accidents were the leading causes of TBI among nonusers, whereas the majority of all user groups reported TBI due to vehicular accidents.

TABLE 1

TABLE 1

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Internet access

The most frequently reported means of accessing the Internet was via smartphone (reported by 75% of users), followed by laptop computer (68%), desktop computer (57%), and tablet (49%). Access to new technology was high, with 65% reporting their newest device was less than a year old and only 10% reporting it was more than 3 years old. Almost everyone (96%) reported using the Internet from home. Work and other public locations with Wi-Fi access, such as a coffee shop (45%) or someone else's house with Internet access (49%), were other popular locations.

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Type and frequency of Internet usage

With nearly three-fourths of respondents with TBI reporting current Internet use, types of online activities (social and nonsocial) were also examined (see Table 2). Among Internet users, 38% reported spending at least 7 hours per week engaged in social online activities, 44% spent 1 to 6 hours per week online socially, and 18% reported less than an hour per week in social activities. Nonsocial activities were defined as online activities that did not involve communication with another Internet user, either in real-time or delayed time. More than one-third (36%) reported engaging in nonsocial online activities at least 7 hours per week, 52% reported 1 to 6 hours, and 12% reported less than an hour per week.

TABLE 2

TABLE 2

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Social media use

Among respondents with TBI who reported using the Internet, 79% had a profile account on a social or professional networking site; 27% reported using only 1 SNS, 42% used 2 to 4 sites, and 10% used 5 or more sites. Among those who use SNSs, Facebook was the most popular, with 75% reporting most frequent use of this site. Nearly a quarter (23%) of SNS users also reported having an account with LinkedIn, an online site used primarily for professional networking and job searching. Other sites included Google Plus (27%), Instagram (21%), Twitter (19%), Pinterest (17%), Tumblr (2%), and Flickr (2%).

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Mobile Internet use

In total, 95% of respondents owned a mobile phone, and 75% reported accessing the Internet with their smartphone. Among all respondents with mobile phones, 91% reported that they use their phone to send/receive text messages, with almost half (45%) sending and/or receiving texts 10 times or more in a typical day. Other common tasks completed by those with smartphones are shown in Table 3. Engaging in 5 or more of these mobile activities was positively associated with overall Internet use. Among the low-user group, 31% reported 5 or more activities via a mobile phone, whereas the percentage reporting 5 or more mobile activities was more than half (55%) among the medium-user group and two-thirds (66%) among the high-user group.

TABLE 3

TABLE 3

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Barriers and facilitators of Internet use

A small proportion of the user sample (8%) reported using assistive devices such as voice recognition software or screen reading tools when using the Internet. Three-fourths of respondents (73%) reported not needing any physical or technical assistance; 15% reported needing a little bit. Similar trends were noted when asked the extent to which TBI-related symptoms affected their ability to use the Internet, with 72% reporting no effect and 15% reporting that their TBI affected their ability a little bit. Examples of TBI-related issues reported by respondents included memory problems (eg, remembering passwords), general technical difficulties (eg, Web site navigation, downloading files), visual difficulties that could induce headaches, and difficulty with concentration and focus.

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Attitudes regarding social media use

Respondents were asked a series of Likert scale questions regarding their confidence in navigating the Internet. Two-thirds of Internet users (66%) reported that they were confident in troubleshooting problems encountered when using the Internet. Similarly, the majority of Internet users (87%) endorsed that they were confident searching for information on the Internet. However, when asked about seeking help or advice from an online discussion group, 45% felt that they would not be confident in doing so.

Additional attitudinal statements modified from the FBI27 were administered to assess the extent of Internet users' emotional connectedness to SNSs and its assimilation into their daily lives. As noted earlier, Facebook was the most popular social media site reported, with three-fourths of social networking users reporting current use and 63% having online social networks with 100 or more friends. Respondents generally had positive opinions of their use of social networking. They did not feel overly dependent on it, however, as there was a low rate of endorsement of items asking whether they would feel sad or out of touch if access to the site were interrupted.

Respondents were divided regarding whether they considered their time spent online as being wasteful, with 45% agreeing, 45% disagreeing, and 10% neutral. Nearly two-thirds of the sample (66%) agreed that being online kept them connected, although 55% reported that they would not feel isolated if they did not use the Internet. Overall, more than 80% were satisfied with the amount of time they spent engaging in online social activities.

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Internet nonusers with TBI

Internet nonusers among the sample with TBI were asked additional questions to ascertain Internet availability within their household and the reasons for their nonuse. Nearly 40% had the Internet available at home that was used by others in the same household. Primary reasons for not using the Internet were also reported (see Table 4).

TABLE 4

TABLE 4

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Demographic comparisons with the general population

General population data regarding Internet use were used to compare various demographic and socioeconomic factors between Internet users with TBI and Internet users in the general population (see Table 5). Overall, the proportion of Internet users with TBI was significantly lower than that in the general population, a finding reflected across all demographic comparisons, with the following exceptions: the proportion of Internet users with TBI was not significantly different from the proportion of those without TBI among 18- to 29-year-olds, those who lived in suburban areas, those with a college degree, or those who were employed.

TABLE 5

TABLE 5

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DISCUSSION

This study explored characteristics of Internet usage and online social participation among adults with TBI and compared demographic and socioeconomic attributes of Internet users with TBI with Internet users in the general population. Within the TBI cohort, younger age, living in a suburban community, being employed, higher education, and higher family income were all significantly associated with Internet use. The majority of nonusers were older than 65 years, retired, lived in rural areas, or had a family income of less than $25 000 per year. Neither injury severity nor time since injury differed significantly between Internet users and nonusers. The socioeconomic factors associated with Internet use in the cohort with TBI were quite similar to those observed in the general population.31 Notably, while there were a lower percentage of Internet users in our sample of persons with TBI than that in the general population, these differences were not present among adults with TBI who were younger, more highly educated, employed, or living in a suburban setting (a possible proxy for socioeconomic status). This suggests that the socioeconomic factors affecting Internet use in general—older age, lower income, and rural residence—may disproportionately affect those with TBI.

Patterns of social media use among Internet users with TBI were found to be similar to those reported in the general population. Not only was Facebook the most popular SNS for both cohorts but 51% of online adults with TBI also reported multiplatform use of 2 or more SNSs compared with 52% of online adults in the general population.2 The prevalence of social media use, as well as the size of the corresponding networks of friends among Internet users with TBI, demonstrates the potential to utilize these platforms not only for social engagement but also for access to information and other activities despite the effects of brain injury. Still, given the relatively considerable use of social media among the TBI cohort, 45% of users reported not being confident in seeking help or advice online, which may suggest underutilization of online support such as e-health resources. As the availability of such health resources would be beneficial to these individuals, educating persons with TBI about the potential benefits of online discussion forums and support groups, as well as tips for safeguarding privacy, may increase their comfort with the use of these procedures.

Although this level of technological knowledge among the TBI cohort is promising, it is also important to acknowledge the potential pitfalls of excessive Internet and social media use, as has been observed among the general population. Recent studies have examined issues related to problematic Internet use, including excessive time spent online, perceptions of online friends that may prompt feelings of envy,32 links to depression and loneliness,33–35 and possible increased exposure to cyberbullying.36,37 An emerging literature suggests that some people may be more vulnerable to problematic Internet use or Internet addiction, with one of the most frequently cited risk factors being impaired behavioral regulation.38–42 Since persons with TBI are particularly prone to problems with self-regulation, they may be at increased risk for the development of problematic Internet use. Future research should examine the implications of TBI-related social impairment on problematic Internet use and factors that may mediate risk.

Mobile technology is a major facilitator of online activity, with nearly 75% of the TBI cohort reporting that they accessed the Internet via smartphone to do a variety of interactive mobile tasks such as e-mailing, accessing SNSs, and searching for information related to their current location. The prevalence of mobile Internet use in the TBI sample, even among those who reported low overall Internet use, illustrates the dependence on mobile technology to facilitate online access within this cohort, particularly for those disproportionately affected by non–injury-related factors that influence use such as income. The emergence of smartphone technology may mitigate some of the socioeconomic impact on Internet use reported here and represents a potentially powerful resource for improving disparities in digital access after TBI.

Although the Digital Divide appears to have narrowed compared with earlier studies on this topic,26 we still observed lower rates of Internet use than the general population in persons with TBI who were older than 30 years, from minority backgrounds, or living in urban or rural (as opposed to suburban) areas. Only about half of nonusers with TBI reported no need or interest in Internet use, with technical knowledge (a factor potentially influenced by cognitive impairment) and motor/visual limitations noted as common barriers. In addition, the group reporting no interest may include people who would benefit from Internet use if it were introduced to them. Thus, for at least some persons with TBI, there may be a need for a person-centered approach in which the technology and training are tailored to the individual's needs versus a “one-size-fits-all” process. Such an approach is in the best tradition of rehabilitating persons with chronic disabilities.43

There were several limitations of this study. As the sample was composed of individuals who underwent inpatient rehabilitation and were capable of self-report, adults with either very severe or mild brain injuries were not included, potentially limiting the generalizability of the results. In addition, preinjury level of knowledge/familiarity with online technology was not determined. The current study focused on quantity of Internet usage, but quality of use was not assessed. This would be an important area for further research to identify potential vulnerabilities in this population, as cognitive impairments and behavioral factors in persons with TBI may result in decreased safety in Internet usage and overall decreased quality of the social connections. As these are topics that were not investigated in the current study, the statistics presented about Internet usage should not be interpreted as implying that online usage is associated with positive consequences for all persons with TBI.

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CONCLUSION

As the Internet and its features continue to evolve, it is important to examine access and use by people with disabilities in an ongoing fashion. This study of a large cohort of persons with moderate to severe TBI demonstrated a high rate of Internet and social media use, primarily via smartphones. However, people with TBI may be disproportionately affected by factors associated with Internet nonuse in the general population such as older age, rural residence, and lower levels of education and income. Further study is needed to determine the specific advantages and risks of Internet use for people with TBI and other disabilities.

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Keywords:

brain injury; communication; community reintegration; Internet; social media; social participation

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