Hostname: page-component-8448b6f56d-c47g7 Total loading time: 0 Render date: 2024-04-19T11:26:05.864Z Has data issue: false hasContentIssue false

“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)

Published online by Cambridge University Press:  04 June 2019

Melissa Brunner*
Affiliation:
Speech Pathology, Graduate School of Health, UTS, Ultimo, NSW, Australia
Stuart Palmer
Affiliation:
Melbourne Centre for the Study of Higher Education, The University of Melbourne, Melbourne, VIC, Australia
Leanne Togher
Affiliation:
Speech Pathology, Faculty of Health Sciences, University of Sydney, Sydney, NSW, Australia
Stephen Dann
Affiliation:
College of Business and Economics, Australian National University, Canberra, ACT, Australia
Bronwyn Hemsley
Affiliation:
Speech Pathology, Graduate School of Health, UTS, Ultimo, NSW, Australia
*
*Corresponding author. Email: melissa.brunner@uts.edu.au; Twitter: @LissBEE_CPSP
Get access

Abstract

Aim:

of this study was to examine the Twitter experiences and networks of six adults with cognitive-communication disability after a traumatic brain injury (TBI).

Method:

Using mixed methods, the study integrated: (a) quantitative analysis of Twitter networks using computational and manual coding of tweets; and (b) narrative analysis of in-depth interviews.

Results:

Diverse experiences were evident, with two experienced and four novice users of the platform. However, all reported feeling connected and included, and identified both positive and negative experiences in their use of Twitter. Developing a supportive network facilitated higher frequency of tweets and increased feelings of enjoyment and connectedness. All expressed a desire to continue using or learning to use Twitter but novices lacked support from rehabilitation professionals or experienced Twitter users, and relied instead on a “trial and error” approach.

Conclusion:

Proactive integration of Twitter use during rehabilitation after TBI is warranted to support safe, enjoyable, and meaningful use.

Type
Articles
Copyright
© Australasian Society for the Study of Brain Impairment 2019 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Australian Securities and Investments Commission. (2015). Report 429, Cyber-Resilience Health Check. Retrieved from http://asic.gov.au/regulatory-resources/find-a-document/reports/rep-429-cyber-resilience-health-check/Google Scholar
Baker-Sparr, C., Hart, T., Bergquist, T., Bogner, J., Dreer, L., Juengst, S., & Whiteneck, G. (2018). Internet and social media use after traumatic brain injury: a traumatic brain injury model systems study. The Journal of Head Trauma Rehabilitation, 33(1), E9E17. doi: 10.1097/HTR.0000000000000305CrossRefGoogle ScholarPubMed
Bell, K., Hammond, F., Hart, T., Bickett, A., Temkin, N., & Dikmen, S. (2008). Participant recruitment and retention in rehabilitation research. American Journal of Physical Medicine & Rehabilitation, 87(4), 330338. doi: 10.1097/PHM.0b013e318168d092CrossRefGoogle ScholarPubMed
Brandtzaeg, P. B., & Heim, J. (2011). A typology of social networking sites users. International Journal of Web Based Communities, 7(1), 2851. doi: 10.1504/IJWBC.2011.038124CrossRefGoogle Scholar
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77101. doi: 10.1191/1478088706qp063oaCrossRefGoogle Scholar
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), 4963. doi: 10.1080/02699052.2017.1403047CrossRefGoogle ScholarPubMed
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(17), 15111521. doi: 10.3109/09638288.2015.1045992CrossRefGoogle Scholar
Brunner, M., Hemsley, B., Togher, L., & Palmer, S. (2017). Technology and its role in rehabilitation for people with cognitive-communication disability following a traumatic brain injury (TBI). Brain Injury, 31(8), 10281043. doi: 10.1080/02699052.2017.1292429CrossRefGoogle Scholar
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. Paper presented at the Hawaii International Conference on System Sciences 2019 (HICSS-52). Accepted 06 September 2018, Maui, Hawaii.CrossRefGoogle Scholar
Brunner, M., Palmer, S., Togher, L., & Hemsley, B. (2019). “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 and Communication Disorders, 54(2), 221233. doi: 10.1111/1460-6984.12405CrossRefGoogle ScholarPubMed
Bruns, A., & Moe, H. (2014). Structural layers of communication on Twitter. In Weller, K., Bruns, A., Burgess, J., Mahrt, M., & Puschmann, C. (Eds.), Twitter and Society (pp. 1528) New York: Peter Lang.Google Scholar
Bruns, A., & Stieglitz, S. (2013). Towards more systematic Twitter analysis: metrics for tweeting activities. International Journal of Social Research Methodology, 16(2), 91108. doi: 10.1080/13645579.2012.756095CrossRefGoogle Scholar
Cacioppo, J., & Cacioppo, S. (2014). Social relationships and health: the toxic effects of perceived social isolation. Social and Personality Psychology Compass, 8(2), 5872. doi: 10.1111/spc3.12087CrossRefGoogle ScholarPubMed
Caron, J., & Light, J. (2016). “Social media has opened a world of ‘open communication:’” experiences of Adults with Cerebral Palsy who use Augmentative and Alternative Communication and Social Media. Augmentative and Alternative Communication, 32(1), 2540. doi: 10.3109/07434618.2015.1052887CrossRefGoogle ScholarPubMed
Cassidy, E. (2018). ”Drunk History” Highlights Fight for Section 504 and Disability Rights. Retrieved from https://themighty.com/2018/02/drunk-history-highlights-section-504-sit-ins-for-disability-rights/.Google Scholar
College of Audiologists and Speech-Language Pathologists of Ontario. (2015). Preferred Practice Guideline for Cognitive-Communication Disorders. Retrieved from http://www.caslpo.com/sites/default/uploads/files/PSG_EN_Acquired_Cognitive_Communication_Disorders.pdfGoogle Scholar
Creswell, J. (2014). Research design: qualitative, quantitative, and mixed methods approaches (4th ed.), London: SAGE.Google Scholar
Dann, S. (2015). Benchmarking micro-blog performance: Twitter content classification framework. In J. Burkhalter & N. Wood (Eds.), Maximizing Commerce and Marketing Strategies through Micro-Blogging (pp. 313332). Hershey: IGI Global.CrossRefGoogle Scholar
Douglas, J. (2017). “So that’s the way it is for me—always being left out.” Acquired pragmatic language impairment and social functioning following traumatic brain injury. Brain Impairment, 18(3), 321331. doi: 10.1017/BrImp.2017.20CrossRefGoogle Scholar
Elbourn, E., Togher, L., Kenny, B., & Power, E. (2017). Strengthening the quality of longitudinal research into cognitive-communication recovery after traumatic brain injury: a systematic review. International Journal of Speech-Language Pathology, 19(1), 116. doi: 10.1080/17549507.2016.1193896CrossRefGoogle ScholarPubMed
Gabbert, E. (2018). Is compassion fatigue inevitable in an age of 24-hour news? Retrieved from https://www.theguardian.com/news/2018/aug/02/is-compassion-fatigue-inevitable-in-an-age-of-24-hour-newsGoogle Scholar
Goasduff, L., & Pettey, C. (2011). Gartner survey highlights consumer fatigue with social media. Retrieved from http://www.gartner.com/it/page.jsp?id=1766814Google Scholar
Hemsley, B., Balandin, S., Palmer, S., & Dann, S. (2017). A call for innovative social media research in the field of augmentative and alternative communication. Augmentative and Alternative Communication, 33(1), 1422. doi: 10.1080/07434618.2016.1273386CrossRefGoogle Scholar
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), 15311542. doi: 10.3109/09638288.2015.1045990CrossRefGoogle Scholar
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), 8489. doi: 10.3109/17518423.2013.861529CrossRefGoogle ScholarPubMed
Hemsley, B., Palmer, S., Dann, S., & Balandin, S. (2018). Using Twitter to access the human right of communication for people who use Augmentative and Alternative Communication (AAC). International Journal of Speech-Language Pathology, 20(1), 5058. doi: 10.1080/17549507.2017.1413137CrossRefGoogle Scholar
Hemsley, B., Palmer, S., Goonan, W., & Dann, S. (2017). Motor Neurone Disease (MND) and Amyotrophic Lateral Sclerosis (ALS): social media communication on Selected# MND and# ALS Tagged Tweets. Conference proceedings of the 50th Hawaii International Conference on System Sciences 4 Jan 2017, Waikōloa Beach, Puako, Hawaii. http://hdl.handle.net/10125/41613.Google Scholar
Johnson, W., & Griswold, D. (2017). Traumatic brain injury: a global challenge. The Lancet Neurology, 16(12), 949950. doi: 10.1016/S1474-4422(17)30362-9CrossRefGoogle ScholarPubMed
McPhail, G., & Lourie, M. (2017). Getting real: is realism a blind spot in research methodology? New Zealand Journal of Educational Studies, 52(2), 285299.CrossRefGoogle Scholar
MacDonald, S., & Wiseman-Hakes, C. (2010). Knowledge translation in ABI rehabilitation: a model for consolidating and applying the evidence for cognitive-communication interventions. Brain Injury, 24(3), 486508. doi: 10.3109/02699050903518118CrossRefGoogle Scholar
Malinen, S. (2015). Understanding user participation in online communities: a systematic literature review of empirical studies. Computers in Human Behavior, 46, 228238. doi: 10.1016/j.chb.2015.01.004CrossRefGoogle Scholar
Marwick, A., & Boyd, D. (2011). I tweet honestly, I tweet passionately: Twitter users, context collapse, and the imagined audience. New Media & Society, 13(1), 114133. doi: 10.1177/1461444810365313CrossRefGoogle Scholar
McDonald, S., Dalton, K., Rushby, J., & Landin-Romero, R. (2018). Loss of white matter connections after severe traumatic brain injury (TBI) and its relationship to social cognition. Brain Imaging and Behavior pages 1-11. doi: 10.1007/s11682-018-9906-0Google Scholar
Murthy, D. (2017). The ontology of tweets: mixed methods approaches to the study of Twitter. In Sloan, L. and Quan-Haase, A. (Eds.), The Sage Handbook of Social Media Research Methods. London: Sage.Google Scholar
Naslund, J., Aschbrenner, K., Marsch, L., & Bartels, S. (2016). The future of mental health care: peer-to-peer support and social media. Epidemiology and Psychiatric Sciences, 25(2), 113122. doi: 10.1017/S2045796015001067CrossRefGoogle ScholarPubMed
Nguyen, R., Fiest, K. M., McChesney, J., Kwon, C. S., Jette, N., Frolkis, A. D., & Pringsheim, T. (2016). The international incidence of traumatic brain injury: a systematic review and meta-analysis. Canadian Journal of Neurological Sciences, 43(6), 774785. doi: 10.1017/cjn.2016.290CrossRefGoogle ScholarPubMed
Omnicore. (2019). Twitter by the numbers: stats, demographics & fun facts. Retrieved from https://www.omnicoreagency.com/twitter-statistics/Google Scholar
Palmer, S. (2014). Characterizing Twitter communication– a case study of international engineering academic units. Journal of Marketing for Higher Education, 24(2), 257273. doi: 10.1080/08841241.2014.907220CrossRefGoogle Scholar
Paterson, H. (2017). The use of social media by adults with acquired conditions who use AAC: current gaps and considerations in research. Augmentative and Alternative Communication, 33(1), 2331. doi: 10.1080/07434618.2016.1275789CrossRefGoogle ScholarPubMed
Patton, M. (2015). Qualitative research & evaluation methods (4th ed.). Thousand Oaks: SAGE.Google Scholar
Ponsford, J. (2017). Fatigue and sleep disturbance following TBI. In McMillan, T. & Wood, R. (Eds.), Neurobehavioural disability and social handicap following traumatic brain injury (pp. 178) Abingdon, Oxfordshire: Psychology Press.CrossRefGoogle Scholar
PWD Australia [PWDAustralia]. (2018, July 26). Follow #CultureIsInclusion for launch of groundbreaking report from @FPDNAus @ScottTheHolWrld https://t.co/GznoFAJHaa [Tweet]. Retrieved from https://twitter.com/PWDAustralia/status/1022281767003217920Google Scholar
Rice, P., & Ezzy, D. (1999). Qualitative research methods: a health focus. Melbourne: Oxford University Press.Google Scholar
Riessman, C. K. (2008). Narrative methods for the human sciences. Thousand Oaks: Sage.Google Scholar
Schellinger, S. (2015). Public Perceptions of Traumatic Brain Injury: Knowledge, Attitudes, and the Impact of Education. University of Minnesota. Retrieved from https://conservancy.umn.edu/bitstream/handle/11299/175326/Schellinger_umn_0130E_16021.pdf?sequence=1Google Scholar
Sullivan, S., Schneiders, A., Cheang, C., Kitto, E., Lee, H., Redhead, J., McCrory, P. (2012). ”What’s happening?” A content analysis of concussion-related traffic on Twitter. British Journal of Sports Medicine, 46(4), 258263. doi: 10.1136/bjsm.2010.080341CrossRefGoogle ScholarPubMed
Tate, R. (1999). Executive dysfunction and characterological changes after traumatic brain injury: two sides of the same coin? Cortex, 35(1), 3955. doi: 10.1016/S0010-9452(08)70784-6CrossRefGoogle ScholarPubMed
The Gephi Consortium. (2012). Gephi (Version 0.8.2.1). Paris: The Gephi Consortium.Google Scholar
Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19(6), 349357. doi: 10.1093/intqhc/mzm042CrossRefGoogle ScholarPubMed
Tracy, S. (2013). Qualitative research methods. UK: Wiley-Blackwell.Google Scholar
Trevisan, F. (2017). Crowd-sourced advocacy: promoting disability rights through online storytelling. Public Relations Inquiry, 6(2), 191208. doi: 10.1177/2046147X17697785CrossRefGoogle Scholar
Turkstra, L., Duff, M., Politis, A., & Mutlu, B. (2019). Detection of text-based social cues in adults with traumatic brain injury. Neuropsychological Rehabilitation, 29(5), 789803. doi: 10.1080/09602011.2017.1333012CrossRefGoogle ScholarPubMed
Twitter. (2017). Tweet updates: September 26, 2017. Retrieved from https://developer.twitter.com/en/docs/tweets/tweet-updates.Google Scholar
Workewych, A., Ciuffetelli Muzzi, M., Jing, R., Zhang, S., Topolovec-Vranic, J., & Cusimano, M. (2017). Twitter and traumatic brain injury: a content and sentiment analysis of tweets pertaining to sport-related brain injury. SAGE Open Medicine, 5, 2050312117720057. doi: 10.1177/2050312117720057CrossRefGoogle ScholarPubMed
Yadron, D. (2016). Why do normal people struggle with Twitter? The Guardian. Retrieved from https://www.theguardian.com/technology/2016/feb/18/twitter-problems-jack-dorsey-silicon-valley-technologyGoogle Scholar
Ylvisaker, M. (2006). Self-coaching: a context-sensitive, person-centred Approach to social communication after traumatic brain injury. Brain Impairment, 7(3), 246258. doi: 10.1375/brim.7.3.246CrossRefGoogle Scholar
Ziebland, S., & Wyke, S. (2012). Health and illness in a connected world: how might sharing experiences on the internet affect people’s health? The Milbank Quarterly, 90(2), 219249. doi: 10.1111%2Fj.1468-0009.2012.00662.xCrossRefGoogle Scholar