Surviving the “silent epidemic”: A qualitative exploration of the long-term journey after traumatic brain injury

References

• Alway, Y., Gould, K. R., Johnston, L., McKenzie, D., & Ponsford, J. (2016). A prospective examination of Axis I psychiatric disorders in the first 5 years following moderate to severe traumatic brain injury. Psychological Medicine, 46(6), 1331–1341. https://doi.org/10.1017/s0033291715002986
   PubMed Web of Science ®Google Scholar
• Barman, A., Chatterjee, A., & Bhide, R. (2016). Cognitive impairment and rehabilitation strategies after traumatic brain injury. Indian Journal of Psychological Medicine, 38(3), 172–181. https://doi.org/10.4103/0253-7176.183086
   PubMedGoogle Scholar
• Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
   Google Scholar
• Colantonio, A., Ratcliff, G., Chase, S., Kelsey, S., Escobar, M., & Vernich, L. (2004). Long-term outcomes after moderate to severe traumatic brain injury. Disability and Rehabilitation, 26(5), 253–261. https://doi.org/10.1080/09638280310001639722
   PubMed Web of Science ®Google Scholar
• Crisp, R. (1994). Social reintegration after traumatic brain impairment: A qualitative analysis. Journal of Applied Rehabilitation Counseling, 25(4), 16–21. https://doi.org/10.1891/0047-2220.25.4.16
   Google Scholar
• Cutler, M., Nelson, M. L., Nikoloski, M., & Kuluski, K. (2016). Mindful connections: The role of a peer support group on the psychosocial adjustment for adults recovering from brain injury. Journal of Social Work in Disability & Rehabilitation, 15(3-4), 260–284. https://doi.org/10.1080/1536710X.2016.1220879
   PubMed Web of Science ®Google Scholar
• Dahm, J., & Ponsford, J. (2015). Long-term employment outcomes following traumatic brain injury and orthopaedic trauma: A ten-year prospective study. Journal of Rehabilitation Medicine, 47(10), 932–940. https://doi.org/10.2340/16501977-2016
   PubMed Web of Science ®Google Scholar
• Douglas, J. M. (2013). Conceptualizing self and maintaining social connection following severe traumatic brain injury. Brain Injury, 27(1), 60–74. https://doi.org/10.3109/02699052.2012.722254
   PubMed Web of Science ®Google Scholar
• Fadyl, J. K., Theadom, A., Channon, A., & McPherson, K. M. (2019). Recovery and adaptation after traumatic brain injury in New Zealand: Longitudinal qualitative findings over the first two years. Neuropsychological Rehabilitation, 29(7), 1095–1112. https://doi.org/10.1080/09602011.2017.1364653
   PubMed Web of Science ®Google Scholar
• Fraas, M. R., & Calvert, M. (2009). The use of narratives to identify characteristics leading to a productive life following acquired brain injury. American Journal of Speech-Language Pathology, 18(4), 315–328. https://doi.org/10.1044/1058-0360(2009/08-0008)
   PubMed Web of Science ®Google Scholar
• Gould, K. R., Hicks, A. J., Hopwood, M., Kenardy, J., Krivonos, I., Warren, N., & Ponsford, J. L. (2017). The lived experience of behaviours of concern: A qualitative study of men with traumatic brain injury. Neuropsychological Rehabilitation, 29(3), 1–19. https://doi.org/10.1080/09602011.2017.1307767
   Web of Science ®Google Scholar
• Gutman, S. A., & Napier-Klemic, J. (1996). The experience of head injury on the impairment of gender identity and gender role. American Journal of Occupational Therapy, 50(7), 535–544. https://doi.org/10.5014/ajot.50.7.535
   PubMed Web of Science ®Google Scholar
• Howes, H., Benton, D., & Edwards, S. (2005). Women’s experience of brain injury: An interpretative phenomenological analysis. Psychology & Health, 20(1), 129–142. https://doi.org/10.1080/0887044042000272903
   Web of Science ®Google Scholar
• Jennekens, N., De Casterlé, B. D., & Dobbels, F. (2010). A systematic review of care needs of people with traumatic brain injury (TBI) on a cognitive, emotional and behavioural level. Journal of Clinical Nursing, 19(9-10), 1198–1206. https://doi.org/10.1111/j.1365-2702.2009.03114.x
   PubMed Web of Science ®Google Scholar
• Karlovits, T., & McColl, M. A. (2009). Coping with community reintegration after severe brain injury: A description of stresses and coping strategies. Brain Injury, 13(11), 845–861. https://doi.org/10.1080/026990599121052
   Google Scholar
• Kelly, G., Brown, S., Todd, J., & Kremer, P. (2009). Challenging behaviour profiles of people with acquired brain injury living in community settings. Brain Injury, 22(6), 457–470. https://doi.org/10.1080/02699050802060647
   Web of Science ®Google Scholar
• Kersten, P., Cummins, C., Kayes, N., Babbage, D., Elder, H., Foster, A., Weatherall, M., Siegert, R. J., Smith, G., & McPherson, K. (2018). Making sense of recovery after traumatic brain injury through a peer mentoring intervention: A qualitative exploration. BMJ Open, 8(10), e020672–e020684. https://doi.org/10.1136/bmjopen-2017-020672
   PubMed Web of Science ®Google Scholar
• Knafl, K. A., & Howard, M. J. (1984). Interpreting and reporting qualitative research. Research in Nursing & Health, 7(1), 17–24. https://doi.org/10.1002/nur.4770070105
   PubMed Web of Science ®Google Scholar
• Kreutzer, J. S., Marwitz, J. H., Sima, A. P., Mills, A., Hsu, N. H., & Lukow, H. R. (2018). Efficacy of the resilience and adjustment intervention after traumatic brain injury: A randomized controlled trial. Brain Injury, 32(8), 963–971. https://doi.org/10.1080/02699052.2018.1468577
   PubMed Web of Science ®Google Scholar
• Lefebvre, H., Cloutier, G., & Josee Levert, M. (2008). Perspectives of survivors of traumatic brain injury and their caregivers on long-term social integration. Brain Injury, 22(7-8), 535–543. https://doi.org/10.1080/02699050802158243
   PubMed Web of Science ®Google Scholar
• Levack, W. M. M., Kayes, N. M., & Fadyl, J. K. (2010). Experience of recovery and outcome following traumatic brain injury: A metasynthesis of qualitative research. Disability and Rehabilitation, 32(12), 986–999. https://doi.org/10.3109/09638281003775394
   PubMed Web of Science ®Google Scholar
• Libeson, L., Downing, M., Ross, P., & Ponsford, J. (2018). The experience of return to work in individuals with traumatic brain injury (TBI): A qualitative study. Neuropsychological Rehabilitation, 10, 1–18. https://doi.org/10.1080/09602011.2018.1470987
   Google Scholar
• McGrath, J. C. (2011). Posttraumatic growth and spirituality after brain injury. Brain Impairment, 12(2), 82–92. https://doi.org/10.1375/brim.12.2.82
   Web of Science ®Google Scholar
• Milders, M. (2019). Relationship between social cognition and social behaviour following traumatic brain injury. Brain Injury, 33(1), 62–68. https://doi.org/10.1080/02699052.2018.1531301
   PubMed Web of Science ®Google Scholar
• Morris, P. G., Prior, L., Deb, S., Lewis, G., Mayle, W., Burrow, C. E., & Bryant, E. (2005). Patients’ views on outcome following head injury: A qualitative study. BMC Family Practice, 6(1), 30–35. https://doi.org/10.1186/1471-2296-6-30
   PubMedGoogle Scholar
• Muenchberger, H., Kendall, E., & Neal, R. (2008). Identity transition following traumatic brain injury: A dynamic process of contraction, expansion and tentative balance. Brain Injury, 22(12), 979–992. https://doi.org/10.1080/02699050802530532
   PubMed Web of Science ®Google Scholar
• Nochi, M. (1998a). “Loss of self” in the narratives of people with traumatic brain injuries: A qualitative analysis. Social Science & Medicine, 46(7), 869–878. https://doi.org/10.1016/s0277-9536(97)00211-6
   PubMed Web of Science ®Google Scholar
• Nochi, M. (1998b). Struggling with the labeled self: People with traumatic brain injuries in social settings. Qualitative Health Research, 8(5), 665–681. https://doi.org/10.1177/104973239800800507
   PubMed Web of Science ®Google Scholar
• Nochi, M. (2000). Reconstructing self-narratives in coping with traumatic brain injury. Social Science & Medicine, 51(12), 1795–1804. https://doi.org/10.1016/s0277-9536(00)00111-8
   PubMed Web of Science ®Google Scholar
• Oppermann, J. D. (2004). Interpreting the meaning individuals ascribe to returning to work after traumatic brain injury: A qualitative approach. Brain Injury, 18(9), 941–955. https://doi.org/10.1080/02699050410001671919
   PubMed Web of Science ®Google Scholar
• Padilla, R. (2003). Clara: A phenomenology of disability. American Journal of Occupational Therapy, 57(4), 413–423. https://doi.org/10.5014/ajot.57.4.413
   PubMed Web of Science ®Google Scholar
• Petrella, L., McColl, M. A., Krupa, T., & Johnston, J. (2005). Returning to productive activities: Perspectives of individuals with long-standing acquired brain injuries. Brain Injury, 19(9), 643–655. https://doi.org/10.1080/02699050410001671874
   PubMed Web of Science ®Google Scholar
• Ponsford, J., Alway, Y., & Gould, K. (2018). Epidemiology and natural history of psychiatric disorders following traumatic brain injury. Journal of Neuropsychiatry and Clinical Neurosciences, 30(4), 262–270. https://doi.org/10.1176/appi.neuropsych.18040093
   PubMed Web of Science ®Google Scholar
• Ponsford, J. L., Downing, M. G., Olver, J. H., Ponsford, M., Acher, R., Carty, M., & Spitz, G. (2014). Longitudinal follow-up of patients with traumatic brain injury: Outcome at two, five, and ten years post-injury. Journal of Neurotrauma, 31(1), 64–77. https://doi.org/10.1089/neu.2013.2997
   PubMed Web of Science ®Google Scholar
• Ponsford, J. L., Parcell, D. L., Sinclair, K. L., Roper, M., & Rajaratnam, S. M. (2013). Changes in sleep patterns following traumatic brain injury: A controlled study. Neurorehabilitation and Neural Repair, 27(7), 613–621. https://doi.org/10.1177/1545968313481283
   PubMed Web of Science ®Google Scholar
• Ponsford, J., Sloan, S., & Snow, P. (Eds.) (2013). Traumatic brain injury: Rehabilitation for everyday adaptive living (2nd ed.). Psychology Press.
   Google Scholar
• Reichard, A. A., Langlois, J. A., Sample, P. L., Wald, M. M., & Pickelsimer, E. E. (2007). Violence, abuse, and neglect among people with traumatic brain injuries. The Journal of Head Trauma Rehabilitation, 22(6), 390–402. https://doi.org/10.1097/01.htr.0000300234.36361.b1
   PubMed Web of Science ®Google Scholar
• Richardson, C., McKay, A., & Ponsford, J. L. (2015). Factors influencing self-awareness following traumatic brain injury. Journal of Head Trauma Rehabilitation, 30(2), E43–E54. https://doi.org/10.1097/HTR.0000000000000048
   PubMed Web of Science ®Google Scholar
• Roscigno, C. I., & Van Liew, K. (2008). Pushed to the margins and pushing back: A case study of one adult’s reflections on social interactions after a traumatic brain injury sustained as an adolescent. Journal of Neuroscience Nursing, 40(4), 212–221. https://doi.org/10.1097/01376517-200808000-00005
   PubMed Web of Science ®Google Scholar
• Rusnak, M. (2013). Giving voice to a silent epidemic. Nature Reviews Neurology, 9(4), 186–187. https://doi.org/10.1038/nrneurol.2013.38
   PubMed Web of Science ®Google Scholar
• Sander, A. M., & Struchen, M. A. (2011). Interpersonal relationships and traumatic brain injury. The Journal of Head Trauma Rehabilitation, 26(1), 1–3. https://doi.org/10.1097/HTR.0b013e3182068588
   PubMed Web of Science ®Google Scholar
• Schrank, B., Bird, V., Rudnick, A., & Slade, M. (2012). Determinants, self-management strategies and interventions for hope in people with mental disorders: Systematic search and narrative review. Social Science & Medicine, 74(4), 554–564. https://doi.org/10.1016/j.socscimed.2011.11.008
   PubMed Web of Science ®Google Scholar
• Seagly, K. S., O’Neil, R. L., & Hanks, R. A. (2018). Pre-injury psychosocial and demographic predictors of long-term functional outcomes post-TBI. Brain Injury, 32(1), 78–83. https://doi.org/10.1080/02699052.2017.1374467
   PubMed Web of Science ®Google Scholar
• Shotton, L., Simpson, J., & Smith, M. (2007). The experience of appraisal, coping and adaptive psychosocial adjustment following traumatic brain injury: A qualitative investigation. Brain Injury, 21(8), 857–869. https://doi.org/10.1080/02699050701481621
   PubMed Web of Science ®Google Scholar
• Spitz, G., Ponsford, J. L., Rudzki, D., & Maller, J. J. (2012). Association between cognitive performance and functional outcome following traumatic brain injury: A longitudinal multilevel examination. Neuropsychology, 26(5), 604–612. https://doi.org/10.1037/a0029239
   PubMed Web of Science ®Google Scholar
• Spitz, G., Schönberger, M., & Ponsford, J. (2013). The relations among cognitive impairment, coping style, and emotional adjustment following traumatic brain injury. Journal of Head Trauma Rehabilitation, 28(2), 116–125. https://doi.org/10.1097/HTR.0b013e3182452f4f
   PubMed Web of Science ®Google Scholar
• Strandberg, T. (2009). Adults with acquired traumatic brain injury: Experiences of a changeover process and consequences in everyday life. Social Work in Health Care, 48(3), 276–297. https://doi.org/10.1080/00981380802599240
   PubMed Web of Science ®Google Scholar
• Tedeschi, R., & Calhoun, L. (1995). Trauma and transformation: Growing in the aftermath of suffering. Sage.
   Google Scholar
• Viera, A. J., & Garrett, J. M. (2005). Understanding interobserver agreement: The kappa statistic. Family Medicine, 37(5), 360–363. https://journals.stfm.org/familymedicine
   PubMed Web of Science ®Google Scholar
• Walker, W. C., Stromberg, K. A., Marwitz, J. H., Sima, A. P., Agyemang, A. A., Graham, K. M., Harrison-Felix, C., Hoffman, J. M., Brown, A. W., Kreutzer, J. S., & Merchant, R. (2018). Predicting long-term global outcome after traumatic brain injury: Development of a practical prognostic tool using the traumatic brain injury model systems national database. Journal of Neurotrauma, 35(14), 1587–1595. https://doi.org/10.1089/neu.2017.5359
   PubMed Web of Science ®Google Scholar
• Weyer Jamora, C., Schroeder, S. C., & Ruff, R. M. (2013). Pain and mild traumatic brain injury: The implications of pain severity on emotional and cognitive functioning. Brain Injury, 27(10), 1134–1140. doi:10.3109/02699052.2013.804196
   PubMed Web of Science ®Google Scholar