Social Media – A modern platform with benefits for the entire ABI community

Individuals who acquire a brain injury (ABI) can experience untold challenges. The difficulty with understanding the impacts of brain injury can only be matched by the complexity of the brain itself. From the cognitive to the physical, from academic pursuits to vocational aspirations – and from the very young to the newly retired, brain injury is blind. Brain injury touches everyone. A significant and common consequence to brain injury can be seen in the decline of one’s social life. Participation in social and recreational activities, relationships – both within the family and the community at large all too often fall apart. For some, loneliness and social isolation can become chronic (Hoofien et al., 2001) which are predictors of psychological symptoms such as anxiety and depressed mood (Vaccaro et al., 2007). There is hope. With education, treatment and support challenges can be overcome and lives restored. The large number of social media platforms on the internet provides a modern rehabilitation pathway that is particularly well suited to help treat the social deficits experienced post-ABI.

Treatment Opportunities

For some, their voice literally and figuratively is silenced by brain injury. Social and communication skills training are often recommended during the rehabilitation process. The training can involve increasing pragmatic and processing skills to facilitate improved social participation. Social media provides a context with which to hone these skills. Due to the asynchronous nature of the internet the split second timing needed for face-to-face conversation can now be spread out over hours or even days without prejudice and time pressure. Participants can work on these skills at their own pace and from their own home.

Treatment for anxiety (and other deficits) can be structured in a scaffolded or graded manner; where there is a gradual increase in difficulty and skill level. Word finding, slurred speech and other expressive (and receptive) speech ailments can lead to fear and avoidance. After brain injury such anxiety can be so crippling that some people cannot function nor participate in social activities. For example, going to a coffee shop – a daily routine for many prior to the injury – is out of the question post-ABI. Social isolation can quickly become the norm. The first step in graded exposure may be to just drive by the establishment to start the desensitization process. Concurrently – or if needed as a first step, social media can be used to slowly work on goals, including the pragmatic and processing skills described above.

One participant in a research study, after learning how to use social media, stated (Raghavendra et al., 2013), “Now that I got Facebook I can talk to my sisters and I could not do that before.” An increase in opportunity to connect, to re-establish in some cases – in others develop new relationships, is vital to so many that have become isolated and experience profound difficulty with independence.

What we do during the day, it’s different for everyone, gives us purpose and meaning. Researchers (Powell et al., 2012) highlight the importance of having a sense of purpose and meaning as it is one of the strongest predictors of growth and successful progression through rehabilitation. Social media can provide an unlikely but powerful means to find a new path in life after brain injury. For those that have been on social media for some time the following examples will come as no surprise. By connecting via social media people have developed new career paths that include being an author, speaker and therapist. Romantic relationships leading to marriage have been born out of social media connections. The trajectory that many were on was stopped short as a result of brain injury. Social media can open horizons that were never before seen; some quite spectacular.

The versatility of social media complements OBIA’s chartered objectives, which can be summarized to provide ‘Education, Awareness & Support’. Social media has a viral aspect to it that cannot be replicated by traditional means of sharing information.

Education, Awareness & Support

For those with an ABI, their caregivers and family members, professionals and the community at large using social media to share information has been a boon. The speed and quality of knowledge transfer has never been higher. The versatility of social media complements OBIA’s chartered objectives, which can be summarized to provide ‘Education, Awareness & Support’. Social media has a viral aspect to it that cannot be replicated by traditional means of sharing information. The posting of a unique poster, story or message can be shared and shared – and yes – shared again – to reach people across the globe. The current level of awareness for the effects of brain injury is leading to increased research efforts and policy changes at rates never before seen.

What’s out there for the ABI community?

The number of websites and platforms available to those in the ABI field is too vast to cover in this article. Focusing on the most commonly used sites will provide a snapshot to the numerous benefits to be had.

Facebook: It’s the most popular social media tool out there. You can create a personal profile, search and connect with friends, exchange messages and share information and media. Facebook also allows its users to follow particular organisations and groups who have set up ‘pages’. For example, OBIA has a facebook page (www.facebook.com/OntarioBIA) where it provides education and support, and raises awareness of ABI. There are hundreds of facebook pages dedicated to serving the brain injury community. Form local charitable organizations like OBIA to government institutions like the CDC there is a facebook page for everyone.

Twitter: Another popular social networking tool where users can send a short, mostly text-based message limited to 140 characters. They call this short message a ‘tweet’. Users can share their own tweets, follow the tweets of others or contribute in an online discussion or chat based on a particular topic or event. A recent chat, #ABIchat, was developed right here in Ontario for those in the brain injury community. Using what twitter labels a ‘hashtag’, the number sign ‘#’ is placed in front of a key word or phrase that enables followers and users to participate in a discussion by searching for a hashtag. Some hashtag examples: #ABIchat, #ABI, #TBI, #BrainInjury.

Skype: A software application that uses the internet to make free audio and video calls. The application is free to use and it is free to make audio or video calls over the internet to other Skype users.

From blogs to forums and resource websites (i.e. www.brainline.org & synapse.org.au) – there are many platforms available to the brain injury community. There are many devices that can be used to access these resources:  from apps on the smartphone and tablet to using the standard laptop and desktop. The financial burden is limited to the device that is needed and purchasing access to the internet as nearly all social media platforms are free to use.

Cautionary Tales

Barriers and concerns regarding computer/social media use expressed by current users who have sustained a brain injury include financial, cognitive and physical issues as well as legal implications. Difficulties including problems with remembering the steps needed to access specific software (i.e. Skype) or website (i.e. Facebook) and processing speed (e.g. taking a long time to find things) are among the challenges reported in the literature (Tsaousides et al., 2011). Because of the availability of accommodations (i.e. modifying the brightness and size of screen) visual and physical barriers can be minimized. Likewise through support and training skill development can occur and compensatory strategies can be used to overcome such cognitive barriers.

For those who have suffered a brain injury as a result of motor vehicle accident (or other type of personal injury) and where the legal case is still pending – a word of caution is warranted when it comes to using social media. What gets posted and what gets shared can become relevant to one’s case. The audience on social media is bigger than any of us can truly fathom. Consultation with appropriate legal representation can help those who have ongoing legal claims.

The arrival of new technologies has opened doors that never existed for everyone touched by ABI. Just ten years ago much of this infrastructure did not exist. From chats to fact sheets and from research papers to support groups, the resources available to the ABI community have exploded. The tools, accessibility and benefits of social media will evolve and undoubtedly improve. Those in need of such resources will remain common as will the benefits they reap. Groups of people, small and large will come together, support one another – share and learn – pursue and fulfill dreams.

Originally published in the Ontario Brain Injury Association‘s OBIA Review magazine

References

Hoofien, D., Gilboa, A., Vakil, E., & Donovick, P. J. (2001). Traumatic brain injury (TBI) 10? 20 years later: a comprehensive outcome study of psychiatric symptomatology, cognitive abilities and psychosocial functioning. Brain injury,15(3), 189-209.

Powell, T., Gilson, R., & Collin, C. (2012). TBI 13 years on: factors associated with post-traumatic growth. Disability and rehabilitation34(17), 1461-1467.

Raghavendra, P., Newman, L., Grace, E., & Wood, D. (2013). ‘I could never do that before’: effectiveness of a tailored Internet support intervention to increase the social participation of youth with disabilities. Child: care, health and development39(4), 552-561.

Tsaousides, T., Matsuzawa, Y., & Lebowitz, M. (2011). Familiarity and prevalence of Facebook use for social networking among individuals with traumatic brain injury. Brain injury25(12), 1155-1162.

Vaccaro, M., Hart, T., Whyte, J., & Buchhofer, R. (2007). Internet use and interest among individuals with traumatic brain injury: A consumer survey. Disability & Rehabilitation: Assistive Technology2(2), 85-95.

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