#TBI: How do Traumatic Brain Injury communities communicate and network in Twitter?

Poster presentation at ASSBI, 1-3 June 2017.

Twitter is used by millions of people worldwide as a micro-blogging social networking site. We don’t have much information on how people with traumatic brain injury (TBI) use Twitter or who they connect with. This study looked at TBI-related tweets to get an understanding of how Twitter is being used to share information about TBI.

Tweets that were tagged with TBI-related terms (#hashtags) were captured in Twitter every day for one month (March 2016) and then analysed using multiple methods.

In March 2016, thousands of TBI-related tweets were used to discuss and share information around: (i) health issues; (ii) awareness; (iii) life experiences after TBI; (iv) recovery and rehabilitation; (v) popular issues surrounding sport and TBI; and (vi) inspiration.

Key Findings:

• Twitter is used for a variety of purposes and by a large number of Twitter users to talk about TBI
• Several people who were tweeting shared that they had a TBI
• Twitter is an important yet under‐utilised form of communication technology in TBI rehabilitation
• Using Twitter could help people with TBI to find information about TBI
• Using Twitter could help people with TBI connect with other people with TBI online.

Topic categories of what was said in the tweets

Listening to the personal stories and inspirational tweets by people with TBI could be useful in understanding their experiences and views of living with TBI. This could help to (a) guide conversations to develop person‐centred rehabilitation goals; or (b) stimulate further discussions on ‘living well with TBI’.

Reading tweets tagged with #TBI‐related hashtags could give clinicians and researchers insight into the lived experiences of people with a TBI, as well as the opportunity to engage with a wide TBI community in research and knowledge translation.

Further research is needed to determine the experiences and views of people with TBI using Twitter, to identify and supports that need to be provided for people with TBI to engage in Twitter communities.

Read the full article (Brunner M, Hemsley B, Dann S, Togher L, Palmer S (2018). Hashtag #TBI: A content and network data analysis of tweets about Traumatic Brain Injury. Brain Injury, 32(1), 49-63).

This research was presented at international and national conferences in 2017:

• Brunner M, Hemsley B, Togher L, Dann S, Palmer S (2017). #Hashtag TBI: Communication and networking in Twitter by Traumatic Brain Injury communities. Datablitz oral and poster presentation at the Australasian Society for the Study of Brain Impairment (ASSBI) Conference, 1-3 June 2017, Melbourne, Australia.
• Brunner M, Hemsley B, Togher L, Dann S, Palmer S (2017). A Hashtag Study: How do Traumatic Brain Injury communities communicate and network in Twitter? Oral Presentation at the Speech Pathology Australia National Conference, 28-31 May 2017, Sydney, Australia.
• Brunner M, Hemsley B, Togher L, Dann S, Palmer S (2017). Hashtag TBI: How do Traumatic Brain Injury communities communicate and network in Twitter? Oral presentation at the International Cognitive-Communication Disorders Conference, 19-21 January 2017, Orange California, USA. SlideShare

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2014 – the year of culling, culling, culling…

So much of my 2014 was filled with culling. Trawling through long lines of titles and abstracts in a very, very large EndNote file. Constantly searching for those citations relevant to traumatic brain injury (TBI) and social media –  it certainly brought back memories from my speechBITE work days!

Culling started with 11,673 citations which eventually dwindled to 16 relevant papers. Of course, along the way my Twitter feed was filled with my comments, progress and interesting finds. There were so many papers that captured my eye, even though they weren’t relevant to both TBI and social media, they were relevant to use of social media in healthcare. Being able to share these little discoveries in real time on Twitter also now means that I also have a clear (and public) record of my finds.

Capturing highlights of the arduous process and summing up my 2014 – here is my year of culling in Tweets:

 

PhD ponderings in the realms of Traumatic Brain Injury and Twitter

Getting started in the world of PhD candidature this year has been invigorating, this blog aims to catalogue and share the discoveries along my path towards learning more about the research world. Currently refining research methodology, seeking ethical approval and continuously searching the literature.

PhD Research Topic

Twitter use by people with communication disabilities post traumatic brain injury (TBI).

Supervisors

Bronwyn Hemsley, The University of Newcastle (primary supervisor)
Leanne Togher, The University of Sydney
Stephen Dann, Australian National University
Stuart Palmer, Deakin University

PROJECT DESCRIPTION

Background

It is proposed that this project will align itself with the funded DECRA research ‘TweetReach’ being conducted by Dr Bronwyn Hemsley at the University of Newcastle (commencing 2014-17). The ‘TweetReach’ research aims to examine the impact of training adults with communication disabilities (specifically targeting populations of adults with communication difficulties as a result of lifelong disabilities of Cerebral Palsy; aphasia post stroke; and neurodegenerative ALS) to use Twitter, and barriers and facilitators to successful use to increase information exchange in this vulnerable group.

In addition to these identified populations, teenagers and adults with communication disabilities resulting from traumatic brain injury (TBI) face similar challenges in accessing information independently and engaging effectively in social networks¹. There is an ever growing mass of literature examining the use of social media in health care, there is however limited knowledge of its use, benefits and limitations within the realm of communication disabilities. Whilst there is emerging literature for TBI in social media specifically relating to concussion^{2, 3, 4}, there is currently no known research focussing on the use of social media for teenagers and adults with communication difficulties post TBI, nor studies evaluating the provision of training in social media and its effect on participant abilities to effectively access information and engage socially.

Aims

The aims of this project are to:

a)      Investigate young people with TBI’s and their parents/partners/spouses’ views and experiences on the use, benefits and limitations of Twitter, and barriers and facilitators to its successful use

b)      Evaluate the efficacy of providing an online training module on using Twitter for the target population – teenagers and young adults with TBI. The PhD candidate will teach teenagers and young adults with communication difficulties post TBI to use Twitter for information and engagement via the development of:

1. An online training module for the target population and their significant others (e.g. spouse, parent, friend)
2. Policies and clinical practice guidelines to assist clinicians working with target population

c)       Evaluate the use of Twitter by the target population following online training intervention.

Expected outcomes, significance or rationale

To date, there is no published speech pathology evidence of social media Twitter use for consumers or professionals in the TBI population with communication difficulties. This project is therefore unique as it aims to establish a baseline for current use of Twitter as a social media within this population and evaluate the implementation of a training program on use of Twitter for information exchange and engaging within social networks in this population. It is anticipated that publications arising from this research will also inform future investigations into the use of Twitter and potentially other social media within the TBI population and how best to incorporate functional, everyday aspects of communication (such as social networking) into rehabilitation programs to improve outcomes for teenagers and adults post TBI, as well as reducing dependence and burden on their significant others.

References

1. McDonald S, Togher L, & Code C (Eds.). (2013). Social and Communication Disorders Following Traumatic Brain Injury. Psychology Press.
2. Ahmed OH, Sullivan SJ, Schneiders AG, & Mccrory P (2010). iSupport: do social networking sites have a role to play in concussion awareness?. Disability & Rehabilitation, 32(22), 1877-1883.
3. Sullivan SJ, Schneiders AG, Cheang CW, Kitto E, Lee H, Redhead J, Ward S, Ahmed OH, & McCrory PR (2012). ‘What’s happening?’A content analysis of concussion-related traffic on Twitter. British journal of sports medicine, 46(4), 258-263.
4. Ahmed OH, Sullivan SJ, Schneiders AG, & McCrory PR (2012). Concussion information online: evaluation of information quality, content and readability of concussion-related websites. British journal of sports medicine, 46(9), 675-683.