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The Social Lives of Individuals with Traumatic Brain Injury

Published: 02 May 2017 Publication History

Abstract

Traumatic Brain Injury (TBI) can affect all aspects of an individual's life, including physical ability, communication, and mental health, and present chronic health conditions that persist throughout the lifespan. Although prior work documents a decrease in social interaction following brain injury, little is known about how individuals with TBI engage in social behavior during their recovery, how others in their lives participate, and how these interactions occur in both online and offline contexts. We examine these issues through an interview study involving individuals with TBI, as well as caregivers and social contacts of individuals with TBI. Our analysis identifies the concept of social re-emergence, a non-linear process of developing a new social identity that involves withdrawing from social life, developing goals for social participation, disclosing health information for social support and acceptance, and attaining social independence.

References

[1]
Gazihan Alankus, Amanda Lazar, Matt May, and Caitlin Kelleher. Towards customizable games for stroke rehabilitation. ACM, City, 2010.
[2]
Madeline Balaam, Stefan Rennick Egglestone, Geraldine Fitzpatrick, Tom Rodden, Ann-Marie Hughes, Anna Wilkinson, Thomas Nind, Lesley Axelrod, Eric Harris, and Ian Ricketts. Motivating mobility: designing for lived motivation in stroke rehabilitation. ACM, City, 2011.
[3]
Greg Barish, Patricia Lester, William R. Saltzman, and Eric Elbogen. Beyond sensors: reading patients through caregivers and context. ACM, City, 2014.
[4]
Marilyn Bergner, Ruth A. Bobbitt, William B. Carter, and Betty S. Gilson. The Sickness Impact Profile: development and final revision of a health status measure. Medical care (1981), 787--805.
[5]
Melissa Brunner, Bronwyn Hemsley, Stuart Palmer, Stephen Dann, and Leanne Togher. Review of the literature on the use of social media by people with traumatic brain injury (TBI). Disability and rehabilitation, 37, 17 (2015), 15111521.
[6]
Moira Burke, Cameron Marlow, and Thomas Lento. Social network activity and social wellbeing. ACM, City, 2010.
[7]
Stevie Chancellor, Tanushree Mitra, and Munmun De Choudhury. Recovery Amid Pro-Anorexia: Analysis of Recovery in Social Media. ACM, City, 2016.
[8]
Kathy Charmaz. Constructing grounded theory. Sage, 2014.
[9]
Yunan Chen, Victor Ngo, and Sun Young Park. Caring for caregivers: designing for integrality. ACM, City, 2013.
[10]
Jinghui Cheng, Cynthia Putnam, and Doris C. Rusch. Towards Efficacy-Centered Game Design Patterns For Brain Injury Rehabilitation: A DataDriven Approach. ACM, City, 2015.
[11]
Juliet M. Corbin and Anselm Strauss. Unending work and care: Managing chronic illness at home. Jossey-Bass, 1988.
[12]
John D. Corrigan and Flora M. Hammond. Traumatic brain injury as a chronic health condition. Archives of physical medicine and rehabilitation, 94, 6 (2013), 1199--1201.
[13]
John D. Corrigan, Kip Smith-Knapp, and Carl V. Granger. Outcomes in the first 5 years after traumatic brain injury. Archives of physical medicine and rehabilitation, 79, 3 (1998), 298305.
[14]
Barbara M. Dausch and Sheila Saliman. Use of family focused therapy in rehabilitation for veterans with traumatic brain injury. Rehabilitation Psychology, 54, 3 (2009), 279.
[15]
Ed Diener, Robert A. Emmons, Randy J. Larsen, and Sharon Griffin. The satisfaction with life scale. Journal of personality assessment, 49, 1 (1985), 71--75.
[16]
Sureyya S. Dikmen, Joan E. Machamer, Janet M. Powell, and Nancy R. Temkin. Outcome 3 to 5 years after moderate to severe traumatic brain injury. Archives of physical medicine and rehabilitation, 84, 10 (2003), 1449--1457.
[17]
Joan Morris DiMicco and David R. Millen. Identity management: multiple presentations of self in facebook. ACM, City, 2007.
[18]
Jacinta Douglas. Elizabeth Usher Memorial Lecture: Placing therapy in the context of the self and social connection. International journal of speech-language pathology, 17, 3 (2015), 199210.
[19]
Kristy Draper, Jennie Ponsford, and Michael Schönberger. Psychosocial and emotional outcomes 10 years following traumatic brain injury. The Journal of head trauma rehabilitation, 22, 5 (2007), 278--287.
[20]
Jean E. Dumas, Nicolas Szilas, Urs Richle, and Thomas Boggini. Interactive simulations to help teenagers cope when a parent has a traumatic brain injury. Computers in Entertainment (CIE), 8, 2 (2010), 10.
[21]
Gunther Eysenbach, John Powell, Marina Englesakis, Carlos Rizo, and Anita Stern. Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions. Bmj, 328, 7449 (2004), 1166.
[22]
Mark Faul, Likang Xu, Marlena M. Wald, and Victor G. Coronado. Traumatic brain injury in the USA. Atlanta, GA: national Center for injury Prevention and Control, Centers for disease Control and Prevention (2010).
[23]
Lorna Gibson and Vicki L. Hanson. Digital motherhood: How does technology help new mothers? ACM, City, 2013.
[24]
Hwajung Hong, Eric Gilbert, Gregory D Abowd, and Rosa I. Arriaga. In-group questions and outgroup answers: Crowdsourcing daily living advice for individuals with autism. ACM, City, 2015.
[25]
Matthew K. Hong, Lauren Wilcox, Daniel Machado, Thomas A. Olson, and Stephen F. Simoneaux. Care Partnerships: Toward Technology to Support Teens? Participation in Their Health Care. ACM, City, 2016.
[26]
Jina Huh and Mark S. Ackerman. Collaborative help in chronic disease management: supporting individualized problems. ACM, City, 2012.
[27]
Jina Huh, Leslie S. Liu, Tina Neogi, Kori Inkpen, and Wanda Pratt. Health vlogs as social support for chronic illness management. ACM Transactions on Computer-Human Interaction (TOCHI), 21, 4 (2014), 23.
[28]
Jina Huh and Wanda Pratt. Weaving clinical expertise in online health communities. ACM, City, 2014.
[29]
Grant L. Iverson. Outcome from mild traumatic brain injury. Current opinion in psychiatry, 18, 3 (2005), 301--317.
[30]
Matthew Jamieson, Marilyn McGee-Lennon, Breda Cullen, Stephen Brewster, and Jonathan Evans. Issues influencing the Uptake of Smartphone Reminder apps for People with Acquired Brain Injury. ACM, City, 2015.
[31]
Adam N. Joinson. Looking at, looking up or keeping up with people?: motives and use of facebook. ACM, City, 2008.
[32]
Cathy Jones. Glasgow coma scale. AJN The American Journal of Nursing, 79, 9 (1979), 15511557.
[33]
Ricardo E. Jorge, Robert G. Robinson, David Moser, Amane Tateno, Benedicto Crespo-Facorro, and Stephan Arndt. Major depression following traumatic brain injury. Archives of general psychiatry, 61, 1 (2004), 42--50.
[34]
Robert Allen Keith, Carl V. Granger, Byron B. Hamilton, and Frances S. Sherwin. The functional independence measure. Adv Clin Rehabil, 1 (1987), 6--18.
[35]
Rebecca Koehler, Erin Wilhelm, and Ira Shoulson. Cognitive rehabilitation therapy for traumatic brain injury: evaluating the evidence. National Academies Press, 2012.
[36]
Airi Lampinen, Vilma Lehtinen, Asko Lehmuskallio, and Sakari Tamminen. We're in it together: interpersonal management of disclosure in social network services. ACM, City, 2011.
[37]
Harvey S. Levin. Neurobehavioral outcome of closed head injury: implications for clinical trials. Journal of neurotrauma, 12, 4 (1995), 601--610.
[38]
Harvey S. Levin, Felicia C. Goldstein, and Ellen J. MacKenzie. Depression as a Secondary Condition Following Mild and Moderate Traumatic Brain Injury. City, 1997.
[39]
Muriel D. Lezak and Kevin P. O'Brien. Longitudinal study of emotional, social, and physical changes after traumatic brain injury. Journal of Learning Disabilities, 21, 8 (1988), 456--462.
[40]
Eden Litt, Erin Spottswood, Jeremy Birnholtz, Jeff T. Hancock, Madeline E. Smith, and Lindsay Reynolds. Awkward encounters of an other kind: collective self-presentation and face threat on Facebook. ACM, City, 2014.
[41]
Leslie S. Liu, Jina Huh, Tina Neogi, Kori Inkpen, and Wanda Pratt. Health vlogger-viewer interaction in chronic illness management. ACM, City, 2013.
[42]
Leslie S. Liu, Kori M. Inkpen, and Wanda Pratt. I'm Not Like My Friends: Understanding How Children with a Chronic Illness Use Technology to Maintain Normalcy. ACM, City, 2015.
[43]
Edmund LoPresti, Ned Kirsch, Richard Simpson, and Debra Schreckenghost. Solo: interactive task guidance. ACM, City, 2005.
[44]
Haley MacLeod, Kim Oakes, Danika Geisler, Kay Connelly, and Katie Siek. Rare world: Towards technology for rare diseases. ACM, City, 2015.
[45]
Julie Maitland and Matthew Chalmers. Selfmonitoring, self-awareness, and self-determination in cardiac rehabilitation. ACM, City, 2010.
[46]
Lena Mamykina, Elizabeth D. Mynatt, and David R. Kaufman. Investigating health management practices of individuals with diabetes. ACM, City, 2006.
[47]
Alice E. Marwick. I tweet honestly, I tweet passionately: Twitter users, context collapse, and the imagined audience. New media & society, 13, 1 (2011), 114--133.
[48]
Brent E. Masel and Douglas S. DeWitt. Traumatic brain injury: a disease process, not an event. Journal of neurotrauma, 27, 8 (2010), 1529--1540.
[49]
Skye McDonald and Sharon Flanagan. Social perception deficits after traumatic brain injury: interaction between emotion recognition, mentalizing ability, and social communication. Neuropsychology, 18, 3 (2004), 572.
[50]
Skye McDonald, Sharon Flanagan, Jennifer Rollins, and Julianne Kinch. TASIT: A new clinical tool for assessing social perception after traumatic brain injury. The Journal of head trauma rehabilitation, 18, 3 (2003), 219--238.
[51]
Alvin McLean Jr., Surreyya S. Dikmen, and Nancy R. Temkin. Psychosocial recovery after head injury. Archives of physical medicine and rehabilitation, 74, 10 (1993), 1041--1046.
[52]
Mark W. Newman, Debra Lauterbach, Sean A. Munson, Paul Resnick, and Margaret E. Morris. It's not that i don't have problems, i'm just not putting them on facebook: challenges and opportunities in using online social networks for health. ACM, City, 2011.
[53]
Thomas A. Novack, Amy L. Alderson, Beverly A. Bush, Jay M. Meythaler, and Kay Canupp. Cognitive and functional recovery at 6 and 12 months post-TBI. Brain Injury, 14, 11 (2000), 987--996.
[54]
Michael Oddy, Michael Humphrey, and David Uttley. Subjective impairment and social recovery after closed head injury. Journal of Neurology, Neurosurgery & Psychiatry, 41, 7 (1978), 611616.
[55]
John H. Olver, Jennie L. Ponsford, and Carolyn A. Curran. Outcome following traumatic brain injury: a comparison between 2 and 5 years after injury. Brain injury, 10, 11 (1996), 841--848.
[56]
Margareta Östman and Lars Kjellin. Stigma by association. The British Journal of Psychiatry, 181, 6 (2002), 494--498.
[57]
Carolyn E. Pang, Carman Neustaedter, Bernhard E. Riecke, Erick Oduor, and Serena Hillman. Technology preferences and routines for sharing health information during the treatment of a chronic illness. ACM, City, 2013.
[58]
Sun Young Park and Yunan Chen. Individual and Social Recognition: Challenges and Opportunities in Migraine Management. ACM, City, 2015.
[59]
Anne Marie Piper, Raymundo Cornejo, Lisa Hurwitz, and Caitlin Unumb. Technological Caregiving: Supporting Online Activity for Adults with Cognitive Impairments. ACM, City, 2016.
[60]
Anne Marie Piper, Nadir Weibel, and James D. Hollan. Introducing multimodal paper-digital interfaces for speech-language therapy. ACM, City, 2010.
[61]
Wanda Pratt, Kenton Unruh, Andrea Civan, and Meredith M. Skeels. Personal health information management. Communications of the ACM, 49, 1 (2006), 51--55.
[62]
Cynthia Putnam, Jinghui Cheng, Fang Lin, Sai Yalla, and Stephanie Wu. Choose a Game": Creation and Evaluation of a Prototype Tool to Support Therapists in Brain Injury Rehabilitation. City, 2016.
[63]
Shelly Rodgers and Qimei Chen. Internet community group participation: Psychosocial benefits for women with breast cancer. Journal of Computer-Mediated Communication, 10, 4 (2005), 00-00.
[64]
Sarita Yardi Schoenebeck. Giving up Twitter for Lent: how and why we take breaks from social media. ACM, City, 2014.
[65]
Jonathan M. Silver, Rachel Kramer, Steven Greenwald, and Myrna Weissman. The association between head injuries and psychiatric disorders: findings from the New Haven NIMH Epidemiologic Catchment Area Study. Brain Injury, 15, 11 (2001), 935--945.
[66]
Meredith M. Skeels, Kenton T. Unruh, Christopher Powell, and Wanda Pratt. Catalyzing social support for breast cancer patients. ACM, City, 2010.
[67]
Margaret A. Struchen, Monique R. Pappadis, Angelle M. Sander, Christina S. Burrows, and Katherine A. Myszka. Examining the contribution of social communication abilities and affective/behavioral functioning to social integration outcomes for adults with traumatic brain injury. The Journal of head trauma rehabilitation, 26, 1 (2011), 30--42.
[68]
Robyn L. Tate, G Anthony Broe, Ian D. Cameron, Adeline E. Hodgkinson, and Cheryl A. Soo. Preinjury, injury and early post-injury predictors of long-term functional and psychosocial recovery after severe traumatic brain injury. Brain Impairment, 6, 02 (2005), 75--89.
[69]
Nancy R. Temkin, John D. Corrigan, Sureyya S. Dikmen, and Joan Machamer. Social functioning after traumatic brain injury. The Journal of head trauma rehabilitation, 24, 6 (2009), 460--467.
[70]
Anja Thieme, Jayne Wallace, Thomas D. Meyer, and Patrick Olivier. Designing for mental wellbeing: towards a more holistic approach in the treatment and prevention of mental illness. ACM, City, 2015.
[71]
Theodore Tsaousides, Yuka Matsuzawa, and Matthew Lebowitz. Familiarity and prevalence of Facebook use for social networking among individuals with traumatic brain injury. Brain injury, 25, 12 (2011), 1155--1162.
[72]
Sherry Turkle. The second self: Computers and the human spirit. Mit Press, 2005.
[73]
Paul Wehman, Pam Targett, Mike West, and John Kregel. Productive work and employment for persons with traumatic brain injury: what have we learned after 20 years? The Journal of head trauma rehabilitation, 20, 2 (2005), 115--127.
[74]
Barry Wilier, Kenneth J. Ottenbacher, and Mary Lou Coad. The Community Integration Questionnaire: a comparative examination. American journal of physical medicine & rehabilitation, 73, 2 (1994), 103--111.

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    cover image ACM Conferences
    CHI '17: Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems
    May 2017
    7138 pages
    ISBN:9781450346559
    DOI:10.1145/3025453
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    Published: 02 May 2017

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    1. recovery
    2. social interaction
    3. traumatic brain injury

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    • (2024)SMART-TBI: Design and Evaluation of the Social Media Accessibility and Rehabilitation Toolkit for Users with Traumatic Brain InjuryProceedings of the 26th International ACM SIGACCESS Conference on Computers and Accessibility10.1145/3663548.3675641(1-19)Online publication date: 27-Oct-2024
    • (2022)The Reintegration Journey Following a Psychiatric Hospitalization: Examining the Role of Social TechnologiesProceedings of the ACM on Human-Computer Interaction10.1145/35129696:CSCW1(1-31)Online publication date: 7-Apr-2022
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