Developing a model of long-term social rehabilitation after traumatic brain injury: the case of the head forward centre

References

• Oddy M, McMillan TM. Future directions: brain injury services in 2010. In: Wood R, McMillan T, editors. Neurobehavioural disability and social handicap following traumatic brain injury. Hove: Psychology Press; 2001.
   Google Scholar
• Willer B, Corrigan J. Whatever it takes: a model for community-based services. Brain Injury. 1994;8(7):647–659.
   PubMed Web of Science ®Google Scholar
• Brooks J, Shavelle R, Strauss D, et al. Long-term survival after traumatic brain injury Part II: life expectancy. Arch Phys Med Rehabil. 2015;96(6):1000–1005.
   PubMed Web of Science ®Google Scholar
• Colantonio A, Ratcliff G, Chase S, et al. Long-term outcomes after moderate to severe traumatic brain injury. Disab Rehabil. 2004;26(5):253–261.
   PubMed Web of Science ®Google Scholar
• Eames P, Cotterill G, Kneale TA, et al. Outcome of intensive rehabilitation after severe brain injury: a long-term follow-up study. Brain Injury. 1996;10(9):631–650.
   PubMed Web of Science ®Google Scholar
• Fleminger S, Ponsford J. Long-term outcome after traumatic brain injury. Br Med J. 2005;331(7530):1419–1420.
   PubMed Web of Science ®Google Scholar
• Hoofien D, Gilboa A, Vakil E, et al. Traumatic brain injury (TBI) 10–20 years later: a comprehensive outcome study of psychiatric symptomatology, cognitive abilities and psychosocial functioning. Brain Inj. 2001;15(3):189–209.
   PubMed Web of Science ®Google Scholar
• Levack W, Kayes N, Fadyl J. Experience of recovery and outcome following traumatic brain injury: a metasynthesis of qualitative research. Disab Rehabil. 2010;32(12):986–999.
   PubMed Web of Science ®Google Scholar
• Mazaux J, Masson F, Levin H, et al. Long-term neuropsycho- logical outcome and loss of social autonomy after traumatic brain injury. Arch Phys Med Rehabil. 1997;78(12):1316–1320.
   PubMed Web of Science ®Google Scholar
• Wood R, Rutterford N. Psychosocial adjustment 17 years after severe brain injury. J Neurol, Neurosurg Psychiatry. 2006;77(1):71–73.
   PubMed Web of Science ®Google Scholar
• Ponsford J, Spitz G. Stability of employment over the first 3 years following traumatic brain injury. J Head Trauma Rehabil. 2015;30(3):E1–E11.
   PubMed Web of Science ®Google Scholar
• Shames J, Treger I, Ring H, et al. Return to work following traumatic brain injury: trends and challenges. Disab Rehabil. 2007;29(17):1387–1395.
   PubMed Web of Science ®Google Scholar
• Tate R, Simpson G, McRae P. Traumatic Brain Injury. In Handbook of vocational rehabilitation and disability evaluation. Cham (Switzerland): Springer International Publishing; 2015. p. 263–294.
   Google Scholar
• Bier N, Dutil E, Couture M. Factors affecting leisure participation after a traumatic brain injury: An exploratory study. J Head Trauma Rehab. 2009;24(3):187–194.
   PubMed Web of Science ®Google Scholar
• Brown M, Gordon W. a, Spielman L. Participation in social and recreational activity in the community by individuals with traumatic brain injury. Rehabil Psychol. 2003;48(4):266–274.
   Web of Science ®Google Scholar
• Fleming J, Braithwaite H, Gustafsson L, et al. Participation in leisure activities during brain injury rehabilitation. Brain Injury. 2011;25(9):806–818.
   PubMed Web of Science ®Google Scholar
• Wise E, Mathews-Dalton C, Dikmen S, et al. Impact of traumatic brain injury on participation in leisure activities. Arch Phys Med Rehabil. 2010;91(9):1357–1362.
   PubMed Web of Science ®Google Scholar
• Winkler D, Unsworth C, Sloan S. Time use following a severe traumatic brain injury. J Occup Sci. 2005;12(2):69–81.
   Google Scholar
• Dawson D, Chipman M. The disablement experienced by traumatically brain-injured adults living in the community. Brain Injury. 1995;9(4):339–353.
   PubMed Web of Science ®Google Scholar
• Elsass L, Kinsella G. Social interaction following severe closed head injury. Psychol Med. 1987;17(1):67–78.
   PubMed Web of Science ®Google Scholar
• Finset A, Dyrnes S, Krogstad J, et al. Self-reported social networks and interpersonal support 2 years after severe traumatic brain injury. Brain Injury. 1995;9(2):141–150.
   PubMed Web of Science ®Google Scholar
• Kozloff R. Networks of social support and the outcome from severe head injury. J Head Trauma Rehab. 1987;2(3):14–23.
   Google Scholar
• Kinsella G, Ford B, Moran C. Survival of social relationships following head injury. Int Disab Stud. 1989;11(1):9–14.
   PubMedGoogle Scholar
• Mukherjee D, Reis J, Heller W. Women living with traumatic brain injury: social isolation, emotional functioning and implications for psychotherapy. Women Ther. 2003;26(1/2):3–26.
   Web of Science ®Google Scholar
• Olver J, Ponsford J, Curran C. Outcome following traumatic brain injury: a comparison between 2 and 5 years after injury. Brain Injury. 1996;10(11):841–848.
   PubMed Web of Science ®Google Scholar
• Thomsen I. Late outcome of very severe blunt head trauma: a 10–15 year second follow-up. J Neurol Neurosurg Psychiatry. 1984;47(3):260–268.
   PubMed Web of Science ®Google Scholar
• Salas CE, Casassus M, Rowlands L, et al. Relating through sameness’: a qualitative study of social isolation and friendship in chronic traumatic brain injury. Neuropsychol Rehabil. 2018;28(7):1161–1178.
   PubMed Web of Science ®Google Scholar
• Douglas J. Loss of friendship following traumatic brain injury: a model grounded in the experience of adults with severe injury. Neuropsychol Rehabilitation. 2019;8:1–26.
   Google Scholar
• Sander A, Struchen M. Interpersonal relationships and traumatic brain injury. J Head Trauma Rehab. 2011;26(1):1–3.
   PubMed Web of Science ®Google Scholar
• Tyerman A, King N. Psychological approaches to rehabilitation after traumatic brain injury. Malden: Blackwell; 2008.
   Google Scholar
• Greenwood R, McMillan T. Models of rehabilitation programmes for the brain-injured adult. I: current provision, efficacy and good practice. Clin Rehabil. 1993;7(3):248–255.
   Google Scholar
• Select Committee on Health. Third report: head injury. Rehabilitation. London: House of Commons; 2001.
   Google Scholar
• McMillan T, Oddy M. Service provision for social disability and handicap after acquired brain injury. In: McMillan T, Wood R, editors. Neurobehavioural disability and social handicap following traumatic brain injury. Oxon: Routledge; 2001. p. 257–273.
   Google Scholar
• Martelli M, Zasler N, Tiernan P. Community based rehabilitation: special issues. Neuro Rehabil-An Interdiscipl J. 2012;31(1):3–18.
   PubMed Web of Science ®Google Scholar
• Douglas J, Dyson M, Foreman P. Increasing leisure activity following severe traumatic brain injury: Does it make a difference? Brain Impairment. 2006;7(2):107–118.
   Google Scholar
• Gerber G, Gargaro J. Participation in a social and recreational day programme increases community integration and reduces family burden of persons with acquired brain injury. Brain Injury. 2015;29(6):722–729.
   PubMed Web of Science ®Google Scholar
• Hutchinson S, Loy D, Kleiber D, et al. Leisure as a coping resource: variations in coping with traumatic injury and illness. Leisure Sci. 2003;25(2–3):143–161.
   Web of Science ®Google Scholar
• McLean A, Jarus T, Hubley A, et al. Differences in social participation between individuals who do and do not attend brain injury drop-in centres: a preliminary study. Brain Injury. 2012;26(1):83–94.
   PubMed Web of Science ®Google Scholar
• McLean A, Jarus T, Hubley A, et al. Associations between social participation and subjective quality of life for adults with moderate to severe traumatic brain injury. Disabil Rehabil. 2014;36(17):1409–1418.
   PubMed Web of Science ®Google Scholar
• Tate R, Wakim D, Genders M. A systematic review of the efficacy of community-based, leisure/social activity programmes for people with traumatic brain injury. Brain Impairment. 2014;15(3):157–176.
   Web of Science ®Google Scholar
• Ben-Yishay Y, Diller L. Handbook of holistic neuropsychological rehabilitation. Outpatient rehabilitation of traumatic brain injury. New York: Oxford University Press; 2011.
   Google Scholar
• Klonoff P. The art and science of milieu- oriented neurorehabilitation. Barrow Quarterly. 2005;21(2):14–21.
   Google Scholar
• Prigatano G. Principles of neuropsychological rehabilitation. New York: Oxford University Press; 1999.
   Google Scholar
• Wilson B, Gracey F. Towards a comprehensive model of neuropsychological rehabilitation. In: Wilson B, Gracey F, Evans J, Bateman A, editors. Neuropsychological rehabilitation. New York: Cambridge University Press; 2010. p. 1–21.
   Google Scholar
• Head Forward Centre for Social Rehabilitation after TBI. 2016 [cited 2016 Jan]. Available from: http://www.headforward.org.
   Google Scholar
• Matheson K, Anisman H. Biological and psychosocial responses to discrimination. The social cure: identity, health and well-being. New York: Psychology Press; 2012. p. 133–153.
   Google Scholar
• Boake C. Supervision Rating Scale: a measure of functional outcome from brain injury. Arch Phys Med Rehabil. 1996;77(8):765–772.
   PubMed Web of Science ®Google Scholar
• Berger R. Now I see it, now I don’t: researcher’s position and reflexivity in qualitative research. Qual Res. 2015;15(2):219–234.
   Web of Science ®Google Scholar
• Paterson B, Scott-Findlay S. Critical issues in interviewing people with traumatic brain injury. Qual Health Res. 2002;12(3):399–409.
   PubMed Web of Science ®Google Scholar
• Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology. 2006;3(2):77–101.
   Google Scholar
• Wilson B, editor. Neuropsychological rehabilitation theory and practice. Lisse: Swets and Zeitlinger; 2005.
   Google Scholar
• Maguire M, Delahunt B. Doing a thematic analysis: a practical, step-by-step guide for learning and teaching scholars. AISHE-J: Ireland J Teach Learn Higher Educa. 2017;9(3). Available from: https://ojs.aishe.org/index.php/aishe-j/article/view/335/0
   Google Scholar
• Nowell LS, Norris JM, White DE, et al. Thematic analysis: striving to meet the trustworthiness criteria. Int J Qual Methods. 2017;16(1):160940691773384–160940691773313.
   Web of Science ®Google Scholar
• Gill IJ, Wall G, Simpson J. Clients’ perspectives of rehabilitation in one acquired brain injury residential rehabilitation unit: a thematic analysis. Brain Injury. 2012;26(7–8):909–920.
   PubMed Web of Science ®Google Scholar
• Ben-Yishay Y. Reflections on the evolution of the therapeutic milieu concept. Neuropsychol Rehabil. 1996;6(4):327–343.
   Web of Science ®Google Scholar
• Wilson B, Gracey F, Evans J, et al. Neuropsychological rehabilitation. New York: Cambridge University Press; 2010.
   Google Scholar
• Klonoff P. Individual and group psychotherapy in milieu-oriented neurorehabilitation. Applied Neuropsychol. 1997;4(2):107–118.
   PubMedGoogle Scholar
• Coetzer R. Psychotherapy after acquired brain injury: is less more. Chilean J Neuropsychol. 2013;8:36–41.
   Google Scholar
• Prigatano G. Work, love, and play after brain injury. Bull Menninger Clin. 1989;53(5):414–431.
   PubMed Web of Science ®Google Scholar
• Malley D, Bateman A, Gracey F. Practically based project groups. In: Wilson B, Gracey F, Evans J, Bateman A, editors. Neuropsychological rehabilitation. theory, models, therapy and outcome. Cambridge: Cambridge University Press; 2010. p. 164–180.
   Google Scholar
• Gracey F, Yeates G, Palmer S, et al. The psychological support group. In: Wilson B, Gracey F, Evans J, Bateman A, editors. Neuropsychological rehabilitation. theory, models, therapy and outcome. Cambridge: Cambridge University Press; 2010. p. 123–136.
   Google Scholar
• Douglas J, Drummond M, Knox L, et al. Rethinking social-relational perspectives in rehabilitation: traumatic brain injury as a case study. In: McPherson K, Gibson B, Leplege A, editors. Rethinking rehabilitation theory and practice. Boca Raton: CRC Press; 2015. p. 137–162.
   Google Scholar
• Douglas J. Social Linkage, self-concept, and well-being after severe traumatic brain injury. In: Jetten J, Haslam C, Haslam A, editors. The social cure: identity, health and well-being. Hove: Psychology Press; 2012. p. 237–254.
   Google Scholar
• Gracey F, Ownsworth T. The experience of self in the world: the personal and social contexts of identity change after brain injury. In: Jetten J, Haslam C, Haslam A, editors. The social cure: identity, health and well-being. Hove: Psychology Press; 2012. p. 273–295.
   Google Scholar
• Douglas JM. Conceptualizing self and maintaining social connection following severe traumatic brain injury. Brain Injury. 2013;27(1):60–74.
   PubMed Web of Science ®Google Scholar
• Haslam C, Holme A, Haslam S, et al. Maintaining group memberships: social identity continuity predicts well-being after stroke. Neuropsycholog Rehabil. 2008;18(5–6):671–691.
   PubMed Web of Science ®Google Scholar
• Helliwell J, Barrington-Leigh C. How much is social capital worth? In: Jetten J, Haslam C, Haslam A, editors. The social cure: identity, health and well-being. Hove: Psychology Press; 2012. p. 55–71.
   Google Scholar
• Carlsson E, Paterson B, Scott-Findlay S, et al. Methodological issues in interviews involving people with communication impairments after acquired brain damage. Qual Health Res. 2007;17(10):1361–1371.
   PubMed Web of Science ®Google Scholar
• Prigatano G. 1994 Sheldon Berrol, MD, senior lectureship: the problem of lost normality after brain injury. J Head Trauma Rehab. 1995;10(3):88–95.
   Web of Science ®Google Scholar
• Jumisko E, Lexell J, Söderberg S. The experiences of treatment from other people as narrated by people with moderate or severe traumatic brain injury and their close relatives. Disabil Rehabil. 2007;29(19):1535–1543.
   PubMed Web of Science ®Google Scholar
• Paterson J, Stewart J. Adults with acquired brain injury: perceptions of their social world. Rehabil Nursing. 2002;27(1):13–18.
   Google Scholar
• Riley G, Hagger B. Disclosure of a stigmatized identity: a qualitative study of the reasons why people choose to tell or not tell others about their traumatic brain injury. Brain Injury. 2015;29(12):1480–1489.
   PubMed Web of Science ®Google Scholar
• Nochi M. Loss of self” in the narratives of people with traumatic brain injuries: a qualitative analysis. Soc Sci Med. 1998;46(7):869–878.
   PubMed Web of Science ®Google Scholar
• Alston M, Jones J, Curtin M. Women and traumatic brain injury: “It’s not visible damage. Aust Soc Work. 2012;65(1):39–53.
   Web of Science ®Google Scholar
• Freeman A, Adams M, Ashworth F. An exploration of the experience of self in the social world for men following traumatic brain injury. Neuropsychol Rehabil. 2015;25(2):189–215.
   PubMed Web of Science ®Google Scholar
• Gracey F, Evans J, Malley D. Capturing process and outcome in complex rehabilitation interventions: a “Y-shaped” model. Neuropsychol Rehabil. 2009;19(6):867–890.
   PubMed Web of Science ®Google Scholar
• Ownsworth T. 2014. Self-identity after brain injury. Hove: Psychology Press.
   Google Scholar
• Silverman A, Molton I, Smith A, et al. Solace in solidarity: disability friendship networks buffer well-being. Rehabil Psychol. 2017;62(4):525–533.
   PubMed Web of Science ®Google Scholar
• Salmon N. We just stick together’: how disabled teens negotiate stigma to create lasting friendship. J Intellect Disab Res. 2013;57(4):347–358.
   PubMed Web of Science ®Google Scholar
• Hagen C, Malkmus D, Durham P. Rancho Los Amigos levels of cognitive functioning scale. Downey (CA): Professional Staff Association; 1972.
   Google Scholar