Using social media in research and rehabilitation with people who have a traumatic brain injury (TBI)
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This document discusses the use of social media in research and rehabilitation for people with traumatic brain injuries (TBI). It outlines a PhD research project that uses mixed methods to study how people with TBI use social media platforms like Twitter. The research aims to understand the views and experiences of people with TBI and health professionals on using social media during rehabilitation. Preliminary results show that people with TBI use Twitter to discuss health issues, raise TBI awareness, and find inspiration, but some struggle without support to effectively engage online.
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Using social media in research and rehabilitation with people who have a traumatic brain injury (TBI)
- 1. Graduate School of Health Speech Pathology Using social media in research and rehabilitation with people who have a traumatic brain injury (TBI) Department of Communication Sciences and Disorders, John A. Burns School of Medicine, University of Hawai'i at Manoa, 14th January 2019 @LissBEE_CPSP - Melissa Brunner, PhD candidate
- 2. Acknowledgments • Bronwyn Hemsley • Leanne Togher • Stuart Palmer • Stephen Dann Using social media in research and rehabilitation 2 #TwitterMindUoH @LissBEE_CPSP
- 3. Liss Brunner PhD Candidate | BaAppSc (SpPath) | MHlthSci (Stroke) | CPSP MSPAA Twitter: https://twitter.com/LissBEE_CPSP PhD blog: http://melissabrunner.wordpress.com/ Recent Media: UTS Makers: Liss Brunner Recent Publications: ‘I kind of figured it out’: the views and experiences of people with traumatic brain injury (TBI) in using social media—self‐determination for participation and inclusion online Hashtag #TBI: A content and network data analysis of tweets about Traumatic Brain Injury Technology and its role in rehabilitation for people with cognitive-communication disability following a traumatic brain injury (TBI) Review of the literature on the use of social media by people with traumatic brain injury (TBI) Publications List: https://scholar.google.com.au/citations?user=eIWS3ywAAAAJ&hl=en Using social media in research and rehabilitation 3 #TwitterMindUoH @LissBEE_CPSP
- 4. Using social media in research and rehabilitation 4 Images: https://www.google.com/maps; https://i.pinimg.com/236x/cd/00/f5/cd00f5007cdb3fe919989fa0bbc5fa6d--poster-koalas.jpg; https://storage.googleapis.com/little-passports-blog/shutterstock_336457160.jpg #TwitterMindUoH @LissBEE_CPSP
- 5. Using social media in research and rehabilitation 5 Images: https://www.discoverballina.com.au/visit/media/com_jbusinessdirectory/pictures/companies/608/panoramalighthousebeach780x600-1488085279.jpg; https://media-cdn.tripadvisor.com/media/photo-s/07/f4/24/de/the-giant-prawn.jpg #TwitterMindUoH @LissBEE_CPSP
- 6. Using social media in research and rehabilitation 6 Image: https://www.uts.edu.au/about #TwitterMindUoH @LissBEE_CPSP
- 7. Using social media in research and rehabilitation 7 Images: www.google.com; https://www.uts.edu.au/about #TwitterMindUoH @LissBEE_CPSP
- 8. Using social media in research and rehabilitation 8 #TwitterMindUoH @LissBEE_CPSP
- 9. Using social media in research and rehabilitation 9 • Determine the impacts of cognitive-communication disability following a TBI on quality of life, including mental health, wellbeing, participation, and social inclusion. • Explain the evidence base for the use of social media in rehabilitation with people who have a traumatic brain injury (TBI). • Identify socio-environmental factors that affect the use of social media by people who have a traumatic brain injury (TBI). • Demonstrate an awareness of formal and informal networks for professional development and support in Twitter. • Demonstrate proficiency in using Twitter for professional purposes in speech language pathology. Learning Objectives #TwitterMindUoH @LissBEE_CPSP
- 10. The person with a TBI who uses social media – what’s the story? 10
- 11. Social participation in online environments after a TBI • Cognitive-Communication disability • Social relationships • Rehabilitation after TBI • Vulnerability in online environments • Benefits of online social participation • Benefits of Twitter as a platform • How do people with TBI use Twitter and other social media? Using social media in research and rehabilitation 11 #TwitterMindUoH @LissBEE_CPSP
- 12. Literature Review Using Social Media after a Traumatic Brain Injury 12 • Social media research in this group is limited. • Current research is also limited primarily to Facebook. • Focus of research is restricted to ‘risks’ and potential harms rather than usage and experience, or frequency or patterns of use. #TwitterMindUoH @LissBEE_CPSP
- 13. Literature Review Using Social Media after a Traumatic Brain Injury 13 • Assistive Technology, AAC, ICT • Limited technological research related to rehabilitation of cognitive- communication • Multi-factorial and complex #TwitterMindUoH @LissBEE_CPSP
- 14. Gaps in the Research Using social media in research and rehabilitation 14 1. People with TBI in social media research. 2. People with TBI and Twitter research. 3. Views and experiences of people with TBI and their health professionals involved in TBI rehabilitation, on the use of social media including Twitter. #TwitterMindUoH @LissBEE_CPSP
- 15. PhD Research Aims Using social media in research and rehabilitation 15 a) Determine the views and experiences of adults with TBI on the use, benefits and limitations of using social media, barriers and facilitators to its successful use, and any supports needed for participation; b) Evaluate the use of Twitter by people with TBI; from their perspective and as reflected in their Tweet data and Twitter networks. c) Understand the views and experiences of health professionals working with adults with TBI on the use of social media during TBI rehabilitation. #TwitterMindUoH @LissBEE_CPSP
- 16. Methods 16
- 17. Research Methodology • Socio-technical theoretical framework • Social media research • Mixed methods research –Exploratory –Sequential –Big data –In-depth qualitative investigations Using Social Media after a Traumatic Brain Injury 17 #TwitterMindUoH @LissBEE_CPSP
- 18. Methods Using Social Media after a Traumatic Brain Injury 18 BACKGROUND Systematic Literature Reviews 1. Social Media & TBI 2. ICT & TBI rehabilitation STUDY 1 Twitter Hashtag Data Analysis Public tweets containing TBI- related hashtags STUDY 2 Narrative Interviews People with TBI who use social media STUDY 3 Narrative Interviews and Twitter Data Analysis People with TBI who use Twitter STUDY 4 Focus Groups Health Professionals in TBI Rehabilitation #TwitterMindUoH @LissBEE_CPSP
- 20. TBI-related hashtags used and discussed on Twitter (#hashtag study) Using Social Media after a Traumatic Brain Injury 20 In this network, there were 219 people who self-identified as having a TBI. Twitter was used to discuss: • Health issues • Raise awareness of TBI • Life after TBI • Sport and concussion • Inspiration and hope #TwitterMindUoH @LissBEE_CPSP
- 21. Views of people with TBI on their use of Social Media after TBI (interviews) • Multiple platforms used • Learnt through trial and error • Need a sense of purpose for use Using Social Media after a Traumatic Brain Injury 21 #TwitterMindUoH @LissBEE_CPSP
- 22. Views and experiences of people with TBI on their use of Twitter (interviews); and Twitter networks of people with TBI (network analysis) SUBMITTED PUBLICATION: “If I knew what I was doing on Twitter then I would use it more”: Twitter experiences and networks of people with traumatic brain injury (TBI) Using Social Media after a Traumatic Brain Injury 22 • From novice and ‘lurking’ to expert ‘prolific’ tweeters • Prolific users not necessarily strategic users • Novice users struggle without support • Connections in Twitter networks helps them to be engaged in society and meaningful conversations • People with TBI want to grow their audience online but need help to do so #TwitterMindUoH @LissBEE_CPSP
- 23. Content of tweets by people with TBI: What do people who have a TBI tweet about? (content analysis) Using Social Media after a Traumatic Brain Injury 23 Conference proceedings HICSS-52, 2019 (Maui, Hawaii), open access paper: http://hdl.handle.net/10125/59870 • Everyday events – ‘diary of a daily life tweets’ • Emotions • Strategies for coping • Gratitude and appreciation • Politics • Advocacy #TwitterMindUoH @LissBEE_CPSP
- 24. Implications for Rehabilitation after TBI 24
- 25. What is the role of social media in rehabilitation after TBI? Content analysis of tweets by people with TBI 25 • Connection • Communication • Social Participation • Advocacy Images: http://thriveboston.com/counseling/wp-content/uploads/2017/09/pexels-photo-236147-e1506352361119.jpeg; https://image.shutterstock.com/image-photo/chat-online-communication-social-media-260nw-371776081.jpg #TwitterMindUoH @LissBEE_CPSP
- 26. TBI communities in Twitter 26Using social media in research and rehabilitation Image: https://leadtail.com/wp-content/uploads/2014/11/Dollarphotoclub_64203958_tweet_faces-768x510.jpg #TwitterMindUoH @LissBEE_CPSP
- 27. Social Media for Research and Rehabilitation 27
- 28. Blogs Collaborative projects Social networking sites Content communities Virtual social worlds Virtual game worlds What is social media? 28Using social media in research and rehabilitation Kaplan & Haenlein (2010) Images: Google images – search for ‘social media icons’ #TwitterMindUoH @LissBEE_CPSP
- 29. Social networking sites 29Using social media in research and rehabilitation Sensis (2017) #TwitterMindUoH @LissBEE_CPSP
- 30. Which ones do you use? 30Using social media in research and rehabilitation Image: https://www.frogx3.com/wp-content/uploads/2017/04/Iconos-Redes-sociales.jpg #TwitterMindUoH @LissBEE_CPSP
- 31. www.twitter.com/LissBEE_CPSP Twitter 31Using social media in research and rehabilitation #TwitterMindUoH @LissBEE_CPSP
- 32. Why use social media? • Networking • Resources • Influence • Leadership • Recognition • Discussion • Advocacy • Global • This information exchange is a critical link for those in underserved areas who would otherwise not have access to the latest information from journals, conferences, courses, and textbooks 32Using social media in research and rehabilitation Freitag et al. (2017) #TwitterMindUoH @LissBEE_CPSP
- 33. http://www.nature.com/polopoly_fs/7.19049.1407841183!/image/nature-idle- browse-or-chat.png_gen/derivatives/fullsize/nature-idle-browse-or-chat.png Van Noorden (2014) Which platform/s should I use? 33Using social media in research and rehabilitation #TwitterMindUoH @LissBEE_CPSP
- 34. How can we use social media? 34Using social media in research and rehabilitation Images: https://pbs.twimg.com/media/CtoKGDSWYAA4sCS.jpg; https://pbs.twimg.com/media/C9Cql0cU0AAby0b.jpg #DevLangDis #WeSpeechies #slpeeps #slp2b #TBI #braininjury #TwitterMindUoH @LissBEE_CPSP
- 35. What is Twitter? 35Using social media in research and rehabilitation Image: https://fthmb.tqn.com/eR7B6Wq9VbtoGZ9v0WHXJ6JWPJM=/768x0/filters:no_upscale()/about/twitter-Dazeley-583e654b5f9b58d5b1ee1151.jpg #TwitterMindUoH @LissBEE_CPSP
- 36. User’s Twitter name (their ‘handle’) Topic #hashtags can be used to reach a much wider audience Still space left (from max of 280 characters) Add different types of media - pictures, GIFs, polls, location details… Add links to external content, e.g. blog Anatomy of a tweet 36Using social media in research and rehabilitation #TwitterMindUoH @LissBEE_CPSP
- 37. Evolution - #Twitter280 37Using social media in research and rehabilitation #TwitterMindUoH @LissBEE_CPSP
- 38. Image: https://jacplus.files.wordpress.com/2011/11/5069092268_cd8f8e4f30_b.jpg 38Using social media in research and rehabilitation #TwitterMindUoH @LissBEE_CPSP
- 39. ‘How to tweet’ resources are plentiful 39Using social media in research and rehabilitation #TwitterMindUoH @LissBEE_CPSP
- 40. Structural layers of Twitter MICRO: Tweets starting with an @user are directed to a specific tweeter and form the ‘micro’ layer of Twitter. MESO: Tweets without the @user at the front are intended to appear in followers’ timelines and form the ‘meso’ layer of Twitter. MACRO: Tweets with a hashtag are intended for followers and non-followers alike in the ‘macro’ layer of Twitter. 40Using social media in research and rehabilitation Bruns & Moe (2014)#TwitterMindUoH @LissBEE_CPSP
- 41. Content classification of tweets 1. Conversational (tweets mentioning another tweeter) 2. News (announcement and journalism) 3. Pass-along (retweets and sharing links to other internet content) 4. Social presence (showing connection with other tweeters) 5. Status broadcast (where tweeters share their thoughts, feelings, experiences, and ‘diary of a daily life’ content) 41Using social media in research and rehabilitation Dann (2015) #TwitterMindUoH @LissBEE_CPSP
- 42. Let’s Tweet 42
- 43. 43Using social media in research and rehabilitation Images: http://www.psdgraphics.com/file/hello-my-name-is-template.jpg; https://pbs.twimg.com/media/CiPjvLUVAAALlBG.jpg #TwitterMindUoH @LissBEE_CPSP
- 44. Starting to tweet • Tweets can only contain 280 characters – you need to keep it short and sweet • You can include links, and attach photos or videos • Emoji (picture symbols) can be used • Using abbreviations and shortening words is common • You can tweet by clicking the ‘Tweet’ button at the top of your Twitter feed: • Or find this button in your Twitter app: 44Using social media in research and rehabilitation #assbi2017 #TwitterMindUoH @LissBEE_CPSP
- 45. ACTIVITY: Write a tweet 45Using social media in research and rehabilitation #TwitterMindUoH @LissBEE_CPSP
- 46. What to tweet • Share resources with others e.g. “This is an excellent article on…” • Let people know about your own work e.g. “Our publication is now available at…” • Ask for advice on problems e.g. “Has anyone got any advice on…?” • Talk to others about topics or issues that interest you 46Using social media in research and rehabilitation • Bring awareness to issues faces by the population you work with e.g. “Did you know that people with #TBI ....” • Promote events e.g. “Looking forward to presenting at...” • Congratulate people on their achievements e.g. “Thank you for organising a fantastic #assbi2017 conference @ASSBI1” #TwitterMindUoH @LissBEE_CPSP
- 47. ACTIVITY: Did you write a short or a long tweet? 47Using social media in research and rehabilitation #TwitterMindUoH @LissBEE_CPSP
- 48. ACTIVITY: Use a picture/gif in a tweet 48Using social media in research and rehabilitation #TwitterMindUoH @LissBEE_CPSP
- 49. Type in the link OR Copy & paste it from Internet ACTIVITY: Insert a link into your tweet 49Using social media in research and rehabilitation #TwitterMindUoH @LissBEE_CPSP
- 50. • Learn what a hashtag is • Be able to use them well • Engagement drops with a too many hashtags in a tweet ACTIVITY: Use a hashtag 50Using social media in research and rehabilitation #TwitterMindUoH @LissBEE_CPSP
- 51. ACTIVITY: Searching Twitter 51Using social media in research and rehabilitation #TwitterMindUoH @LissBEE_CPSP
- 52. 52Using social media in research and rehabilitation Who do I follow? (#WeSpeechies #slpeeps #slp2bs…) #TwitterMindUoH @LissBEE_CPSP
- 53. 53Using social media in research and rehabilitation Who could you follow? #TwitterMindUoH @LissBEE_CPSP
- 54. 54Using social media in research and rehabilitation @legogradstudent@ResearchMark #TwitterMindUoH @LissBEE_CPSP
- 55. 55Using social media in research and rehabilitation #TwitterMindUoH @LissBEE_CPSP
- 56. ACTIVITY: Search for & follow someone 56Using social media in research and rehabilitation #TwitterMindUoH @LissBEE_CPSP
- 57. ACTIVITY: Retweet a tweet 57Using social media in research and rehabilitation #TwitterMind @LissBEE_CPSP
- 58. ACTIVITY: Quote a tweet 58Using social media in research and rehabilitation #TwitterMindUoH @LissBEE_CPSP
- 59. ACTIVITY: Reply to a tweet (be conversational) 59Using social media in research and rehabilitation #TwitterMindUoH @LissBEE_CPSP
- 60. ACTIVITY: Delete a tweet 60Using social media in research and rehabilitation #TwitterMindUoH @LissBEE_CPSP
- 61. ACTIVITY: Pin a tweet 61Using social media in research and rehabilitation #TwitterMindUoH @LissBEE_CPSP
- 62. How to make the most of Twitter 62
- 63. Based on Hemsley (2017b) Slideshare: https://www.slideshare.net/bronwynhemsley/twitter-masterclass-for-postgrad-researchers-trinity-college-dublin Grow your Twitter skills 63Using social media in research and rehabilitation 1. Set your profile to public. Make sure you have a picture and a bio statement 2. Log in once a day for 15 minutes and check your notifications 3. Reply to people! 4. Find good people to follow 5. Spend some time lurking / retweeting 6. Write more original tweets than retweets 7. Copy-paste links into tweets 8. Use #hashtags (2 at most) 9. Practice! Practice makes you better 10. Tell your friends your @username #TwitterMindUoH @LissBEE_CPSP
- 64. Based on Hemsley (2017b) Slideshare: https://www.slideshare.net/bronwynhemsley/twitter-masterclass-for-postgrad-researchers-trinity-college-dublin • Before you do your research (tweet the lit review) • As you write up your research (progress) • Any outputs of your research, tweet them (use Slideshare) • Explain the results – use threaded tweets (reply to yourself) • Give top 10 tips related to your area of knowledge (people love tips) • Be high on INFORMATION content – content is King on twitter • Be high on ENGAGEMENT – respond to people, be approachable • Be HELPFUL – support your peers and let the public know how to find information on twitter in your area, curate information effectively Twitter for Impact and Engagement 64Using social media in research and rehabilitation #TwitterMindUoH @LissBEE_CPSP
- 65. References Using social media in research and rehabilitation 65 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 (Special Issue: Social Media and Communication), 37(2): p. 1511–1521. Brunner M, Hemsley B, Togher L, Palmer S (2017). Technology and its role in rehabilitation for people with cognitive-communication disabilities following a Traumatic Brain Injury (TBI). Brain Injury, 31(8), 1028-1043. 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. Brunner M, Palmer S, Togher L, Hemsley B (2018). ‘I kind of figured it out’: the views and experiences of people with traumatic brain injury (TBI) in using social media—self‐determination for participation and inclusion online. International Journal of Language & Communication Disorders (Special Issue: The Use of Technology in Speech and Language Therapy), early online published 05 June 2018 (open access). Brunner M, Palmer S, Togher L, Dann S, Hemsley B (2019). Content analysis of tweets by people with Traumatic Brain Injury (TBI): Implications for rehabilitation and social media goals. Full paper accepted in the proceedings of the Hawaii International Conference on System Sciences (HICSS-52), January 2019. Brunner M, Palmer S, Togher L, Dann S, Hemsley B (in peer review). “If I knew what I was doing on Twitter then I would use it more”: Twitter experiences and networks of people with traumatic brain injury (TBI). Brain Impairment. 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. #TwitterMindUoH @LissBEE_CPSP
- 66. References Using social media in research and rehabilitation 66 Freitag et al. (2017) Freitag CE, Arnold MA, Gardner JM, Arnold CA (2017). If you are not on social media, here's what you're missing!# DoTheThing. Archives of pathology & laboratory medicine 141(11), 1567-1576. Hemsley, B. (2017). Twitter Masterclass for Postgrad Researchers - Trinity College Dublin. Masterclass presented 6th Sept 2017, Trinity College Dublin. Available at: https://www.slideshare.net/bronwynhemsley/twitter-masterclass-for-postgrad-researchers-trinity-college-dublin. Kaplan, A. M., & Haenlein, M. (2010). Users of the world, unite! The challenges and opportunities of Social Media. Business horizons, 53(1), 59-68. Sensis (2017). Sensis Social Media Report 2017. Accessed 23/06/2017, available at: https://www.sensis.com.au/about/our-reports/sensis-social-media-report Van Noorden, R. (2014). Scientists and the social network. Nature, 512(7513), 126. #TwitterMindUoH @LissBEE_CPSP
Hinweis der Redaktion
- Aloha. In Australia it is customary to acknowledge People and Country in recognition of the traditional owners of the land. So I would like to acknowledge the Gadigal People of the Eora Nation upon whose ancestral lands our City campus of the University of Technology Sydney now stands and the Native peoples of the KONA MOKU.
- Biosketch. Melissa ‘Liss’ Brunner PhD Candidate | BaAppSc(SpPath) | MHlthSci(Stroke) | CPSP MSPAA Liss is a Certified Practicing Speech Pathologist and PhD Candidate at the University of Technology Sydney (UTS) investigating the use of social media, specifically Twitter, by people with traumatic brain injury (TBI). She has over fifteen years of experience in the assessment and management of adults with swallowing and communication difficulties. Her clinical and research expertise is in eHealth and acquired neurologic disorders, particularly working with people who have experienced a TBI or a stroke. Her PhD research will yield important insights into how people with TBI might be supported to use Twitter (and other social media platforms) for communication, participation, and inclusion in online communities. The research is supervised by Professor Bronwyn Hemsley at the UTS, Associate Professor Stuart Palmer at Deakin University, Dr Stephen Dann at the Australian National University, and Professor Leanne Togher at the University of Sydney. Liss’ research is supported in part by an Australian Government Research Training Program Scholarship through UTS. Twitter: https://twitter.com/LissBEE_CPSP PhD blog: http://melissabrunner.wordpress.com/ Recent Media: - More than a one liner: Social media and TBI - The Connecting Power of Twitter: How social media is enhancing the way people with traumatic brain injury communicate - UTS Makers: Liss Brunner Recent Publications: - ‘I kind of figured it out’: the views and experiences of people with traumatic brain injury (TBI) in using social media—self‐determination for participation and inclusion online - Hashtag #TBI: A content and network data analysis of tweets about Traumatic Brain Injury - Technology and its role in rehabilitation for people with cognitive-communication disability following a traumatic brain injury (TBI) - Review of the literature on the use of social media by people with traumatic brain injury (TBI) Publications List: https://scholar.google.com.au/citations?user=eIWS3ywAAAAJ&hl=en
- What do you know about Australia?! Christmas in Ballina – where I grew up
- Christmas in Ballina – where I grew up
- UTS currently – next year moving to new building
- Even before I started my undergraduate degree in speech pathology (many many years ago!), I had seen how changes in communication can change the quality of a person’s life – and also change the lives of everyone around them. This is certainly the case for people who have a TBI. It’s sudden, traumatic, and the changes in their cognitive function can affect how they communicate and navigate relationships with their loved ones and in the broader community.
- After a TBI, people often have one of two distinct communication styles, where some people talk a lot and others have trouble starting conversations or keeping them going. Often a cognitive-communication disability can be subtle but they can have a big effect on their relationships. We know that in the first year after their injury they lose the majority of their friendships and that they are vulnerable to being exploited. In rehabilitation there is a focus on improving social communication, alongside communication goals with regards to returning to work or study. We also know that more and more people use social media for communication and social participation, with over 40% of the world using social media. In Australia - 60% of Aussies using social media every day and many of them using more than one platform. In teenagers, this number goes up even more. Social media can take away some of the immediacy of face-to-face conversations that people with a TBI can have difficulty with – it can give them time to read and respond to conversations and this is considered okay. One of the most popular social media platforms used today, particularly by younger adults, is Twitter. Twitter is a microblog – which means you send very short posts (currently restricted to 280 characters). For people with a TBI, this may mean that there is less pressure for those who have trouble saying very much, but it also helps the people who say a lot, to try and say what they mean in fewer words.
- So I started my PhD with the question – how do people with a TBI use Twitter and other social media platforms? What are the barriers and facilitators? How is it addressed in rehabilitation after TBI? So I started with a systematic review of the literature on the use of social media by people with TBI. This is PUBLISHED in Disability and Rehabilitation in a Special Issue on Social Media and Communication. The review included 16 papers, and identified 3 major categories in the content themes: Risks and benefits Barriers and Facilitators Purposes for use Ultimately – there’s little social media research involving people with a TBI and there was a large focus on the risks and barriers with little knowledge about facilitators, experiences, or patterns of use by people with a TBI.
- It was clear we needed to know more about the factors that influence use of technology more broadly in rehabilitation after TBI for communication. Therefore I conducted a second systematic review which is published in Brain Injury on technology and its role in rehabilitation for people with cognitive-communication disability after a TBI. This review included 95 papers across three categories of technology – assistive technology, Augmentative and Alternative Communication technologies, and Information and communication technologies. Little research related to cognitive-communication rehabilitation however I did identify multiple factors that influence successful use of technology in rehabilitation and developed this model to inform practice which acknowledges that implementation of technology into rehab is multi-factorial and complex and these factors are likely to be different for each individual and may also change over time.
- Unfortunately – from these two reviews, it was clear that we didn’t know how people use social media after a TBI, nor how it was addressed during rehabilitation. So my PhD research aimed to address these identified gaps in the research, and the study that I will be discussing today is part of the research that I conducted investigating how people with a TBI use Twitter.
- From my earlier research, we found that people with a TBI reported they learnt how to use social media through trial and error. They also did this by themselves, with little support from family, friends, or health professionals. They also reported feeling confused and or experiencing cognitive fatigue when using Twitter, which meant they had a tendency to lurk, like, or retweet - rather than tweet themselves. Although people with TBI are keen to use Twitter to get information about brain injury, some had difficulty navigating the platform and reported that they could get overwhelmed or have trouble keeping track of the high volume of tweets appearing in their timelines. In order to identify what would help people with TBI to participate in and be included in Twitter communities, it’s important to examine the tweets of people with TBI who already use Twitter, to understand more about the content of their tweets and the patterns of their tweeting. So the aim of this study was to determine - the ways people with TBI use Twitter to communicate, - any socio-linguistic features of cognitive-communication disability that might be evident in their tweets, and - any aspects of their use of Twitter that could inform the development of social media rehabilitation goals for people with TBI.
- My PhD studies aim to build our knowledge and create a picture of what the current context is and where future research needs to go in order to improve access and outcomes for people with TBI who want to communicate in online environments. So this social media research has used mixed methods that are exploratory and sequential, using big data alongside in-depth qualitative studies.
- This research has been built using a socio-technical theoretical framework. Socio-technical research is diverse and there is little cohesion on the philosophy, theory, and concepts that underpin socio-technical perspectives. However - there is agreement that both social and technical systems are equally important and complementary. So socio-technical theory and research aims to understand the affect and outcomes of social and technical systems as they interact. Collectively, it is the people, the technology, and the communication between people about the technology that create the socio-technical ‘system’ (Coeria). As a society each individual brings with them their own preferences and experiences. Add technology into an individual’s life and it alters not just that person but potentially others around them and on it flows. Socio-technical research explores society and technology together, rather than either one in isolation, in order to get a more comprehensive view of the issues and how to approach or address factors that may influence successful interactions. This is specifically social media research and uses mixed methods that are exploratory and sequential, using big data alongside in-depth qualitative studies. So these studies aim to build on our knowledge and create a picture of what the current context is and where future research needs to go in order to improve access and outcomes for people with TBI who want to communicate in online environments.
- In terms of the methods or processes used – I’ve discussed the reviews, which systematically searched the available literature, and used an integrative content thematic analysis of the data in the included papers. Following on from the reviews, I’ve conducted 4 studies using mixed methods which involved both computational and manual data analysis:
- So I completed the last focus group earlier this year. And so far…
- So in Study 1 – I collected over 50 thousand tweets in 1 month. After exclusions, I analysed over 29 thousand tweets using manual and computational analysis. I found that Twitter is used for a variety of purposes and by a large number of Twitter users to talk about TBI Over 200 people who were tweeting shared that they had a TBI and they expressed feelings of frustration, vulnerability, trauma, acceptance, and generosity. The results of this study are published in Brain Injury and identified that 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 and also to connect with other people who have a TBI.
- In Study 2, I interviewed 13 people with a TBI about their views and experiences of using social media after their injury. This study is published in the International Journal of Language & Communication Disorders in a Special Issue on The use of technology in speech and language therapy. And this is actually my first publication with UTS as my affiliation. All of the participants used social media for connection and all but one used multiple social media platforms. Using thematic content analysis, I identified 5 major categories of themes - which you can see here in the graphic – around getting started, drivers to use, navigation, manner of use, and an evolving sense of social media mastery. They learnt to use social media through trial and error. When they had a sense of purpose they ‘had a go’ and built confidence over time and different platforms, slowly developing social media mastery but with limited structured support to do so.
- Building upon the findings from Study 2 – Study 3 investigated how people with TBI used a specific platform. So in Study 3 – I interviewed 6 people with a TBI who use Twitter and collected their Twitter data for analysis. Using content thematic analysis of the interview data and descriptive and computational analysis of their tweet data and networks, I’m currently finalising a manuscript to submit for publication in the next week or so. Essentially the participants ranged from novice tweeters who mostly ‘lurked’ to more expert ‘prolific’ tweeters Even though they tweeted a lot - Prolific users weren’t necessarily strategic and Novice users struggled without support. Regardless of skill level – a sense of connection helps them to feel engaged and to participate in meaningful conversations
- For Study 3 – I also studied the tweets sent by the participants in more detail – the results have been accepted as a full published paper in the proceedings of the Hawaii International Conference on System Sciences in January next year. Content thematic analysis and computational analysis identified that people with a TBI tweeted about a variety of topics as you can see here. The content themes were also evident in the KH Coder output and by using multiple methods of analysis provided additional insight into how these participants use Twitter. Although the content of their tweets did not show major socio-linguistic difficulties – the participants under-utilised Twitter to interact in conversations or to write about their experiences in patterns similar to that found in the larger dataset of Study 1. This suggests that even if someone with a TBI knows the basics of how to tweet and wants to use Twitter more, knowing who to connect with and having access to support are factors that influence their use of the platform.
- So what does all of this mean for clinical practice right now?
- 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. So we need to look at helping people with a TBI to overcome barriers they might face when using Twitter and other social media platforms, particularly if it’s personally meaningful for the individual to be able to tell their story and connect in online environments.
- So we know that people with TBIs are using Twitter
- Now social media encompasses a wide range of platforms that are used in varying ways, but essentially is user generated content. I won’t talk about all of these today but I will focus on the two that I utilise the most – and that is blogging and Twitter
- Report by Sensis released last year shows that over 50% of Aussies access their social media sites more than 5 times a day, with Instagram, Snapchat, and Twitter use all growing significantly. As you can see, social media use also occurs in different places and at different times. I know I use multiple platforms and use them all slightly differently.
- Which sites do you use? How do you use them? Do you use them differently? So I mainly use my blog, Twitter, Instagram, and Facebook – and I use them all quite differently.
- And these reasons certainly contribute to why Twitter is the platform that I use the most. This is my twitter profile page, and as you can see in my bio [CLICK] – I identify my research interests and affiliations. I also have the link to my blog. I’ve also pinned a tweet [CLICK] (so it’s the first tweet people see if they go to my profile). This tweet describes my latest publication, includes the most relevant hashtags, and also the link to the paper on the publishers website.
- Recent paper in field of Pathology highlights the diverse range of benefits of using social media as a health professional It highlights many benefits to using social media in research… Opportunity to grow one’s personal and professional networks Rich resources of people and cases support an expedited pace of research Activity can directly influence the impact of publications Offers leadership opportunities Influence is increasingly recognized by academic institutions Allow vigorous discussion of latest publications with peers from across the world Allows you to start a social movement and generate a call to action through its global interconnectivity From my perspective, one of the most important is that - Social media is potentially a critical platform for disseminating information to those who cant access scientific evidence themselves.
- So people with TBI are using Twitter. So as health professionals and researchers - which platforms should we use? In 2013, Nature ran a survey and received more than 3,500 responses from 95 different countries, and you can see here that Facebook wasn’t widely used professionally, some platforms were more just to keep a profile there, for example LinkedIn, academia.edu, and Researchgate, whereas researchers on twitter [CLICK] were active, followed discussions, commented on research, and shared information.
- Another way in which we can share evidence-based information and support is via the us of social media platforms for advocacy and raising awareness – this is an eg from speech pathologists in Twitter, promoting awareness of developmental language disorders which has recently replaced older terminology used within the profession. Is anyone aware of any eg’s of how this is being done? In the field of brain injury - Eg: #assbichat #tbi #concussion #tbiawareness #braininjuryawarenessmonth Using Twitter could help people with TBI to find information about TBI and connect with other people with TBI online. 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.
- What does everyone know about Twitter? Actually – who has a Twitter account? Micro-blog (very, very short blog – writing of thoughts online)
- Twitter is used by millions of people worldwide and it’s actually just a really, really, really, really, short blog. This is an example of a tweet that I might send and I’ve highlighted the main features of a tweet because it’s important to know how to tweet effectively if you want people to respond to you.
- But Twitter is constantly evolving – and #Twitter280 is a recent example of this – where the character limitation changed from 140 to 280 characters (Nov 2017). So Twitter is evolving, as is the way in which people use it. So this creates challenges as well as opportunities [read tweet].
- Everyone uses twitter in a different way but I think most people don’t see it’s potential until they actually start using it & find some people that they connect with in Twitter I know that when I started using Twitter I had no clue whatsoever & was really NOT into it – but I had to learn quickly as it was a part my job and now it’s a really big part of my research & professional life I remember one day just thinking – I’ve learned about more new research, highly relevant to my client caseload at the time, in one week than I had the previous year before I got into Twitter. It amazed me then & it still amazes me now, some of the connections & conversations that I get to have with people all over the world, as well as with close friends & colleagues.
- Now there’s plenty of resources and guides on ‘how to tweet’ but that’s just the nuts and bolts of it really, and this stuff just takes time and practice – which we’re going to do today.
- So there’s 3 layers within Twitter…
- There’s also many different ways in which we can classify the content of what’s written in Tweets…
- Choose your Twitter handle. What will people call you on Twitter? All one word, less than 15 characters, unique to you It is possible to change this at a later date, but you should notify your followers When choosing your Twitter handle, consider: Professional tone, e.g. @ilovekittens versus @johnsmith Identifying your credentials, e.g. @JoeBloggsOT Ease of spelling Ease of remembering You are also identified on Twitter by your name To complete setting up your profile, you can: Add a profile photo Add a header photo Add a short biography Add your location Add a link to your website Adding a bio helps people know who you are and also adds to the credibility of your account. Use keywords to describe who you are and your areas of professional interest It may be appropriate to add a disclaimer to your bio e.g. “My own personal and professional views”. Check whether your employer has any policies. Using hashtags can help people find you in search results – we will talk more about hashtags shortly. You can also include a link to your own webpage for further details.
- Hashtags are keywords preceded by a # symbol. This can help Twitter users find tweets that are related to a particular topic. For example - searching for #assbi2017 will bring up all tweets that are related to the ASSBI 2017 conference. Some hashtags are obvious - #ABI #TBI #stroke #dementia In other cases (e.g. conferences), an official hashtag will be set e.g. #assbi2017 Hashtags can also be used as a device to add personality and tone to your tweets. For example “Excited to see many of my #TBI clients making meaningful progress this week! #lovemyjob”
- So the next bit is up to you. I’ve shown you a few of the things that I do to extend my reach and to generate discussion, but how are you going to use social media? You need to make it work for you, think about which platforms might work and what you want to say, but also know that there’s a community here that’s going to able to help you find your voice.
- Thank you for listening and – I’m really looking forward to hearing your feedback because it will all help towards creating new opportunities and better outcomes for people with TBI.