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.
I’d like to acknowledge my PhD advisors Bronwyn, Leanne, Stuart, and also Stephen Dann at ANU for their input into this research.
I’ve already discussed how social media has the potential to support people after TBI and this paper is more specific to Twitter, and was conducted with ethical approval from the University of Newcastle.
Once again if I could please ask that these slides not be photographed as the content will be undergoing peer review soon.
Twitter is a microblogging social networking site that is used by an estimated 320 million people worldwide and currently no studies report on Twitter data, Twitter networks, or tweet content of people with TBI or cognitive-communication impairment.
So the aim of this study was to gather and analyse TBI-related tweets to get a better understanding of how Twitter is being used to share information on TBI.
So does anyone here use Twitter at all? (So a few of you awesome).
Essentially people use Twitter to tweet and a tweet is a microblog – which is a very, very, very, short blog.
This is an example of a tweet that I might send. It is less than 140 characters (which is the maximum length for any tweet) and it contains a hashtag. Topic hashtags can be used to discuss a particular topic.
These @usernames are people’s Twitter names (known as handles) and you can send tweets directly to them by putting their handle at the start of the tweet. You can also add other types of media or links and here I’ve added the link to my blog.
In Twitter you can search for all of the tweets that contain a certain hashtag by using the Twitter search function, and that was what I did in this study.
But the Twitter search only gives tweets from a certain timeframe. So I repeated this search daily for a month to create a single database of tweets that were tagged with #TBI-related hashtags - which included tags like: #BrainInjury #braininjuryawarenessmonth #Concussion and #TBI.
March 2016 was randomly selected and tweets were captured using NCapture, then imported into NVivo for conversion to an Excel spreadsheet for analysis.
Tweets were analysed using multiple methods - which I can go into more detail in the discussion time if need be.
They included: (a) Using Dann’s Content Classification framework to categorise tweets that are: (i) conversational, so people talking directly to one another - remember those tweets with the @username at the beginning; (ii) or news – like journalism and real-time events like conferences; (iii) pass-along – which are people retweeting other peoples’ tweets or sharing links; (iv) social presence tweets – where people talk to a Twitter audience as if they are in the room, like saying ‘hi everyone’ or ‘thanks for coming’; and (v) status broadcast tweets – which are people talking about their thoughts, feelings, and experiences. (b) Inductive coding according to meaning of the conversational and status broadcast tweets was done to determine any content themes. (c) And computational analysis was done using Gephi and KH Coder - which are free software programs that can analyse mass amounts of tweets for their Twitter networks and tweet text content.
A total of 52,581 tweets were captured
23,382 tweets were excluded – and those were tweets: sent before the 1st of March; were irrelevant (for example I now know that #TBI also stands for TeamBringIt if you’re a fan of the Rock); And I didn’t include tweets I couldn’t read, were bulk advertising, or promoting competitions.
This left 29,199 tweets to be analysed - Which is a relatively large number for a hashtag study as some report on datasets as low as 3000 tweets.
There were 893 unique @users in the dataset. Each person can create a ‘bio’ which is their Twitter profile and using these bios, 131 users were considered TBI-related, and a large number of users were not TBI-related or it was unclear from their bios.
After analysis of the tweet content, a further 166 users were identified as having a brain injury. So even though people were readily speaking about their TBI in their tweets, they weren’t putting that information in their bio.
Of the TBI-related users, the largest group was people who identified themselves as having a brain injury.
And it was a very busy community that month. The Gephi visualisations display the paths that tweets travel - either ‘to the world’ (which are undirected) or ‘to other @users’ (which are directed tweets).
This visualisation shows multiple communities communicating about TBI. There was: simple sharing and retweeting seen here in these undirected tweets; Then there were more complicated interactions between users seen here; There's also a collection of ‘plumes’ where one user is sending out large volumes of retweets – so they were like hubs sending info out to others but not necessarily connected to the larger community; and Then there’s small groups of two or more users that are sharing TBI-related tweets, but aren’t connected to the main network.
So there’s a big community here – and they don’t necessarily follow each other but they are hashtagging together.
The pass-along tweets had the highest frequency, so lots of people retweeting and passing along links. There were a large number of conversational and status broadcast tweets, and a much small number of news and social presence tweets.
The thematic analysis focussed on looking at the conversational and status broadcast tweets as there were a lot of them and I was interested in learning what people were talking to each other about and what they were saying about their experiences.
The preliminary analysis showed that Twitter was being used to: Share TBI-related information; Raise awareness of TBI-related issues including causes, symptoms, and disability; Provide insight into the lived experience of having a TBI; Talk about recovery and rehab; Discuss popular issues – mostly around sport and TBI, with the ‘Concussion’ movie being talked about a lot; Others were sharing positive and inspirational words to people with TBI; and It was also being used to connect socially.
Looking at the conversational tweets (the ones starting with the @ symbol), the conversational features varied, with lots of social commentary and chatter, as well as people providing information or support.
7 broad categories of topics emerged which you can see here.
TBI awareness had the most tweets, more than likely due to it being an awareness month, and tweets discussing Film and media and the lived experience were also prominent.
There isn’t enough time to go through each of the categories today – so I’ve chosen to explore 2 of them in a bit more detail.
Firstly, film and media as it’s extremely interesting, and also the lived experience tweets as that’s what interested me most – I wanted to know what people with TBI are experiencing and what they’re saying about it in Twitter.
I’ve separated out the Film and Media status broadcast tweets from the conversational ones to highlight that all of the status broadcast tweets related to the Concussion movie.
Lots of people were tweeting their opinion about the movie and about the acting in the movie – with lots of chatter about Will Smith’s accent or whether Will was robbed of an Oscars nomination or not.
Looking at the conversational tweets, a much broader range of topics was discussed. The Concussion movie was dominant but there was much wider discussion about the ‘concussion controversy’ in impact sports, and discussing other documentaries, such as Louis Theroux was making a new documentary on people living with brain injury.
The Concussion movie and the Oscars may be topics that people are no longer tweeting about. But TBI is clearly coming into popular culture in other ways… and we need to be in these discussions to hear about peoples’ opinions.
All of the lived experience tweets were written by people with a brain injury and they discussed a wide range of topics across these 8 broad themes.
As you can see there was a lot of people talking about their feelings, the changes after TBI especially those relating to cognition, as well as talking about the strategies they use to help.
There wasn’t much said about rehabilitation, activity and participation, or research – although there were more conversational tweets in these categories than status broadcast tweets. This could be because people may think their followers aren’t interested in hearing about these topics? Or maybe they may want to chat about it rather than just state what's happening. Regardless there is certainly an obvious opportunity for increasing tweets talking about rehab and research by people with TBI.
There were themes evident that connected these categories of meaning.
People were frustrated with ongoing, persistent problems, they felt impatient and wanted to get better quicker.
People also expressed their vulnerability – saying they were exhausted, cognitively overloaded, and feeling lost, disoriented, or helpless.
Many expressed how traumatic dealing with their injury had been and its impact on their emotions, often feeling anxious or depressed. There was also significant discussion about their physical pain and the impact it has on their life now.
There were also more positive themes, with many tweeting about acceptance – learning to deal with the challenges of having a disability and accepting their new ‘normal’.
Many wanted to help others and showed generosity through sharing the strategies they had used to help themselves after their injury, and sending inspirational messages designed to support one another, even with other hashtags being used such as #hopeafterheadinjury and #notaloneinbraininjury.
The KH Coder graphic shows what was written in the tweets in concept networks and this visualisation shows 7 clusters of concepts that aligned with the qualitative coding.
The results reflected a large number of Twitter users, many of whom had a TBI, tweeting a lot, for a variety of purposes when talking about TBI. These results suggest that Twitter is important to consider in TBI rehabilitation.
So what does this mean for rehabilitation with people who have cognitive-communication disabilities?
As clinicians we need to consider: whether people with a TBI could be supported to use Twitter.
The tweeters in this study used hashtags – so they want people to hear about their experiences and to be more aware of what it means to live with a TBI, the challenges they face, and their accomplishments.
Twitter provides increased opportunities for communication and connection with others, and it supports communication by being able to include other media such as photos and videos. There is an obvious preference for shorter messages, correct spelling and grammar isn’t of high importance, and the need to respond straight away is not necessarily expected – giving people time to comprehend and then generate a response in their own time. We need to look at helping overcome barriers that people with TBI might face when using Twitter, particularly if it is personally meaningful for the individual to be able to tell their story and connect in online environments.
(b) We also need to consider how we could use Twitter to listen to people with TBI. This dataset alone revealed great insights into the lived experiences of people with a TBI, especially their feelings. We need to follow the hashtags and follow one another to listen and hear these messages. So I could be asking - If you’re not in twitter yet, why aren’t you, if you can listen to people with TBI there?
(c) The low number of research-related tweets may also suggest that Twitter is not yet being used by clinicians for research translation. This study showed a big TBI network and it has the potential to reach a wide audience. As clinicians, is it enough to just pass on a news story? Shouldn’t we be discussing it more and what it might mean in rehab and for the individual?
There are obvious limitations of this research – it’s a snapshot in time, so I can’t claim that it’s truly comprehensive or representative – however it can be useful to locate tweeters with TBI and discover more about their lives through reading their tweets. It also enabled us to applying online research methods in different ways.
Further research is needed to hear the experiences and views of people with TBI about using Twitter. We need to identify any barriers that they’ve experienced, as well as anything that has helped them.
I’m actively recruiting people with TBI to tell me about their experiences and opinions of using Twitter and other forms of social media. For those who are active in Twitter, with their consent I’m also harvesting their tweets in order to better understand how they use Twitter to engage with their community, what they talk about and why. This will help develop and provide training in how to use Twitter, which may help to improve a person’s communication activity and participation after TBI.
I’d like to acknowledge these references
And the images used today
I’ve posed quite a few questions here – so I’ll hand it over to you now.
Hashtag TBI: How do Traumatic Brain Injury communities communicate and network in Twitter?
How do Traumatic Brain Injury communities
communicate and network in Twitter?
a.University of Newcastle
b.University of Sydney
c.NHMRC CRE Brain Recovery
d.Australian National University
Melissa Brunnera, Bronwyn Hemsleya, Leanne Togherbc, Stephen Dannd, Stuart Palmere
#TwitterMind Research - What’s in a tweet?
User’s Twitter name
Topic #hashtags can
be used to reach a
much wider audience
Still 4 characters left
(from the max of 140)
Add different types of
media - pictures,
GIFs, polls, location
Add links to external
content, e.g. blog
Read more: Structural layers of Twitter (Bruns & Moe 2014)
#TBI study - Method
Hashtag search - March 2016
a) Content Classification framework (Dann 2015)
(i) conversational; (ii) news; (iii) pass-along; (iv) social presence; and (v) status broadcast
b) Inductive, qualitative thematic coding (Hemsley et al. 2014, 2017)
c) Computational analysis – visualisations by Gephi and KH Coder
(Palmer 2014; Hemsley & Palmer 2016)
(1st - 31st March 2016)
TBI-related Not TBI-related Unknown
The #TBI tweeting community
Tweets excluded if they were:
a) sent prior to 1st March;
c) not written in English;
d) contained no content;
e) spam; or
The #TBI tweeting community
0 50 100 150 200 250
Person with TBI/BI
TBI Community group or forum
Staff of TBI Organisation
Parent of person with TBI
TBI-related users (n=297)
Content classification of tweets
Content thematic analysis – 7 broad categories
TBI Service Inspiration Humour Impact of TBI
Status Broadcast tweets Conversational tweets
Content thematic analysis – Film and Media
Making sense of
meaning to sport
Making sense of
meaning to own
Making sense of
industry in sport
Status Broadcast (all Film and Media tweets related to the Concussion movie)
News Documentary Research Politics Book Television drama Tour
Content thematic analysis – Lived experience
Strategies Changes in
Status broadcast tweets Conversational tweets
Computational analysis - KH Coder
Sport and TBI
with a brain
Support people with
TBI to use Twitter*
Listen to TBI-related
Use Twitter for
*Brunner et al. (2015); Paterson (in press, 2017)
Limitations and Directions for Future Research
Brunner M, Hemsley B, Palmer S, Dann S, Togher L (2015). Review of the literature on the use of social media by people with
traumatic brain injury (TBI). Disability and Rehabilitation, 37(2): p. 1511–1521.
Bruns A, Moe H (2014). Structural layers of communication on Twitter. In: Weller K, Bruns A, Burgess Mahrt M, Puschmann C, eds.
Twitter and society. New York: Peter Lang: p. 15–28.
Dann S (2015). Benchmarking Micro-Blog Performance: Twitter Content Classification Framework, in Maximizing Commerce and
Marketing Strategies through Micro-Blogging, Burkhalter J and Wood N, Editors. IGI Global: Hershey. p. 313-332.
Hemsley B, Dann S, Palmer S, Allan M, Balandin S (2015). “We definitely need an audience”: experiences of Twitter, Twitter
networks and tweet content in adults with severe communication disabilities who use augmentative and alternative communication
(AAC). Disability and rehabilitation, 37(17), 1531-1542.
Hemsley B, Palmer S (2016, January). Two Studies on Twitter Networks and Tweet Content in Relation to Amyotrophic Lateral
Sclerosis (ALS): Conversation, Information, and ‘Diary of a Daily Life’. In Digital Health Innovation for Consumers, Clinicians,
Connectivity and Community: Selected Papers from the 24th Australian National Health Informatics Conference (HIC 2016) (Vol.
227, p. 41-47). Available at http://ebooks.iospress.nl/volumearticle/44287.
Hemsley B, Palmer S, Goonan W, Dann S (2017, January). Motor Neurone Disease (MND) and Amyotrophic Lateral Sclerosis
(ALS): Social Media Communication on Selected# MND and# ALS Tagged Tweets. In Proceedings of the 50th Hawaii International
Conference on System Sciences. Available at https://scholarspace.manoa.hawaii.edu/handle/10125/41613.
Hemsley B, Palmer S, Balandin S (2014). Tweet reach: A research protocol for using Twitter to increase information exchange in
people with communication disabilities. Developmental Neurorehabilitation, 17(2): p. 84-89.
Palmer S (2014). Characterizing Twitter communication – a case study of international engineering academic units. Journal of
Marketing for Higher Education, 24(2): p. 257-273.
Paterson H (in press, 2017). The use of social media by adults with acquired conditions who use AAC: current gaps and
considerations in research. Augmentative and Alternative Communication.