We are not the same people we used to be: An exploration of family biographical narratives and identity change following traumatic brain injury

References

• Abrahamson, V., Jensen, J., Springett, K., & Sakel, M. (2016). Experiences of patients with traumatic brain injury and their carers during transition from in-patient rehabilitation to the community: A qualitative study. Disability and Rehabilitation, 39, 1683–1694. doi: 10.1080/09638288.2016.1211755
   PubMed Web of Science ®Google Scholar
• Anderson, M. I., Parmenter, T. R., & Mok, M. (2002). The relationship between neurobehavioural problems of severe traumatic brain injury (TBI), family functioning and the psychological well-being of the spouse/caregiver: Path model analysis. Brain Injury, 16(9), 743–757. doi: 10.1080/02699050210128906
   PubMed Web of Science ®Google Scholar
• Bingley, A. F., Thomas, C., Brown, J., Reeve, J., & Payne, S. (2008). Developing narrative research in supportive and palliative care: The focus on illness narratives. Palliative Medicine, 22(5), 653–658. doi: 10.1177/0269216308089842
   PubMed Web of Science ®Google Scholar
• Blake, H. (2008). Caregiver stress in traumatic brain injury. International Journal of Therapy and Rehabilitation, 15(6), 263–271. doi: 10.12968/ijtr.2008.15.6.29878
   Google Scholar
• Bowen, C., Hall, T., Newby, G., Walsh, B., Weatherhead, B., & Yeates, G. N. (2009). The impact of brain injury on relationships across the lifespan and across school, family and work contexts. Human Systems: The Journal of Therapy, Consultation and Training 2, 20(1), 62–77.
   Google Scholar
• Bruner, J. (1990). Acts of meaning. Cambridge, MA: Harvard University.
   Google Scholar
• Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health and Illness, 4(2), 167–182. doi: 10.1111/1467-9566.ep11339939
   PubMedGoogle Scholar
• Butera-Prinzi, F., & Perlesz, A. (2004). Through children’s eyes: Children’s experience of living with a parent with an acquired brain injury. Brain Injury, 18(1), 83–101. doi: 10.1080/0269905031000118500
   PubMed Web of Science ®Google Scholar
• Carnes, S. L., & Quinn, W. H. (2005). Family adaptation to brain injury: Coping and psychological distress. Families, Systems, & Health, 23(2), 186–203. doi: 10.1037/1091-7527.23.2.186
   Google Scholar
• Carter, B. (2008). “Good” and “bad” stories: Decisive moments, “shock and awe” and being moral. Journal of Clinical Nursing, 17(8), 1063–1070. doi: 10.1111/j.1365-2702.2006.01942.x
   PubMed Web of Science ®Google Scholar
• Connolly, D., & O’Dowd, T. (2001). The impact of the different disabilities arising from head injury on the primary caregiver. British Journal of Occupational Therapy, 64(1), 41–46.
   Google Scholar
• Couchman, G., McMahon, G., Kelly, A., & Ponsford, J. (2014). A new kind of normal: Qualitative accounts of multifamily group therapy for acquired brain injury. Neuropsychological Rehabilitation, 24(6), 809–832. doi: 10.1080/09602011.2014.912957
   PubMed Web of Science ®Google Scholar
• Creswell, J. W. (2013). Research design: Qualitative, quantitative, and mixed method approaches, fourth edition, international student edition. Los Angeles, CA: SAGE. Retrieved from http://capitadiscovery.co.uk/derby-ac/items/991688
   Google Scholar
• Degeneffe, C. E. (2001). Family caregiving and traumatic brain injury. Health & Social Work, 26(4), 257–268. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/11758867
   PubMed Web of Science ®Google Scholar
• Degeneffe, C. E., & Burcham, C. M. (2008). Adult sibling caregiving for persons with traumatic brain injury: Predictors of affective and instrument support. Journal of Rehabilitation, 74(3), 10–20.
   Web of Science ®Google Scholar
• Degeneffe, C. E., & Lee, G. K. (2010). Quality of life after traumatic brain injury: Perspectives of adult siblings. Journal of Rehabilitation, 76(4), 27–36.
   Web of Science ®Google Scholar
• Degeneffe, C. E., & Lynch, R. T. (2006). Correlates of depression in adult siblings of persons with traumatic brain injury. Rehabilitation Counseling Bulletin, 49(3), 130–142.
   Web of Science ®Google Scholar
• Degeneffe, C. E., & Olney, M. F. (2008). Future concerns of adult siblings of persons with traumatic brain injury. Rehabilitation Counseling Bulletin, 51(4), 240–250. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=cin20&AN=2010041747&site=ehost-live
   Web of Science ®Google Scholar
• Degeneffe, C. E., & Olney, M. F. (2010). “We are the forgotten victims”: Perspectives of adult siblings of persons with traumatic brain injury. Brain Injury, 24(12), 1416–1427. doi: 10.3109/02699052.2010.514317
   PubMed Web of Science ®Google Scholar
• Denzin, N. K., & Lincoln, Y. S. (2011). The SAGE handbook of qualitative research (4th ed.). Thousand Oaks, CA: SAGE.
   Google Scholar
• Ellis-Hill, C., Payne, S., & Ward, C. (2008). Using stroke to explore the life thread model: An alternative approach to understanding rehabilitation following an acquired disability. Disability and Rehabilitation, 30(2), 150–159. doi: 10.1080/09638280701195462
   PubMed Web of Science ®Google Scholar
• Foster, A. M., Armstrong, J., Buckley, A., Sherry, J., Young, T., Foliaki, S., … McPherson, K. M. (2012). Encouraging family engagement in the rehabilitation process: A rehabilitation provider’s development of support strategies for family members of people with traumatic brain injury. Disability and Rehabilitation, 34(22), 1855–1862. doi: 10.3109/09638288.2012.670028
   PubMed Web of Science ®Google Scholar
• Galvin, K., & Todres, L. (2012). Caring and well-being: A lifeworld approach. London: Routledge.
   Google Scholar
• Gan, C., Campbell, K. A., Gemeinhardt, M., & McFadden, G. T. (2006). Predictors of family system functioning after brain injury. Brain Injury, 20(6), 587–600. doi: 10.1080/02699050600743725
   PubMed Web of Science ®Google Scholar
• Gervasio, A. H., & Kreutzer, J. S. (1997). Kinship and family members' psychological distress after traumatic brain injury: A large sample study. The Journal of Head Trauma Rehabilitation, 12(3), 14–26. Retrieved from http://journals.lww.com/headtraumarehab/Fulltext/1997/06000/Kinship_and_Family_Members__Psychological_Distress.3.aspx
   Web of Science ®Google Scholar
• Gill, C. J., Sander, A. M., Robins, N., Mazzei, D. K., & Struchen, M. A. (2011). Exploring experiences of intimacy from the viewpoint of individuals with traumatic brain injury and their partners. Journal of Head Trauma Rehabilitation, 26(1), 56–68. doi: 10.1097/HTR.0b013e3182048ee9
   PubMed Web of Science ®Google Scholar
• Gill, D. J., & Wells, D. L. (2000). Forever different: Experiences of living with a sibling who has a traumatic brain injury. Rehabilitation Nursing, 25(2), 48–53.
   Google Scholar
• Gosling, J., & Oddy, M. (1999). Rearranged marriages: Marital relationships after head injury. Brain Injury, 13(10), 785–796. doi: 10.1080/026990599121179
   PubMed Web of Science ®Google Scholar
• Gracey, F., & Ownsworth, T. (2012). The experience of self in the world: The personal and social contexts of identity change after brain injury. In J. Jetten, C. Haslam, & A. Haslam (Eds.), The social cure (pp. 273–295). Hove: Psychology Press.
   Google Scholar
• Gracey, F., Palmer, S., Rous, B., Psaila, K., Shaw, K., O’Dell, J., … Mohamed, S. (2008). “Feeling part of things”: Personal construction of self after brain injury. Neuropsychological Rehabilitation, 18( 5–6), 627–650. doi: 10.1080/09602010802041238
   PubMed Web of Science ®Google Scholar
• Hammond, F. M., Davis, C. S., Whiteside, O. Y., Philbrick, P., & Hirsch, M. A. (2011). Marital adjustment and stability following traumatic brain injury: A pilot qualitative analysis of spouse perspectives. The Journal of Head Trauma Rehabilitation, 26(1), 69–78. doi: 10.1097/HTR.0b013e318205174d
   PubMed Web of Science ®Google Scholar
• Harris, J. K. J., Godfrey, H. P. D., Partridge, F. M., & Knight, R. G. (2001). Caregiver depression following traumatic brain injury (TBI): A consequence of adverse effects on family members? Brain Injury, 15(3), 223–238. doi: 10.1080/02699050010004040
   PubMed Web of Science ®Google Scholar
• Harris, D., & Stuart, A. D. (2006). Adolescents’ experience of a parental traumatic brain injury. Health SA Gesondheid, 11(4), 46–56.
   Google Scholar
• Holloway, I., & Freshwater, D. (2007). Narrative research in nursing. Oxford: Blackwell.
   Google Scholar
• Jackson, D., Turner-Stokes, L., Murray, J., Leese, M., & McPherson, K. M. (2009). Acquired brain injury and dementia: A comparison of carer experiences. Brain Injury, 23(5), 433–444. doi: 10.1080/02699050902788451
   PubMed Web of Science ®Google Scholar
• Jennett, B., & Bond, M. (1975). Assessment of outcome after severe brain damage a practical scale. The Lancet, 305(7905), 480–484.
   Google Scholar
• Jumisko, E., Lexell, J., & Soderberg, S. (2007). Living with moderate or severe traumatic brain injury: The meaning of family members’ experiences. Journal of Family Nursing, 13(3), 353–369. doi: 10.1177/1074840707303842
   PubMed Web of Science ®Google Scholar
• Kieffer-Kristensen, R., Teasdale, T. W., & Bilenberg, N. (2011). Post-traumatic stress symptoms and psychological functioning in children of parents with acquired brain injury. Brain Injury, 25(7–8), 752–760. doi: 10.3109/02699052.2011.579933
   PubMed Web of Science ®Google Scholar
• Kosciulek, J. F. (1997). Relationship of family schema to family adaptation to brain injury. Brain Injury, 11(11), 821–830. doi: 10.1080/026990597123034
   PubMed Web of Science ®Google Scholar
• Kreutzer, J. S., Marwitz, J. H., Hsu, N., Williams, K., & Riddick, A. (2007). Marital stability after brain injury: An investigation and analysis. NeuroRehabilitation, 22(1), 53–59.
   PubMed Web of Science ®Google Scholar
• Kreutzer, J. S., Mills, A., & Marwitz, J. H. (2016). Ambiguous loss and emotional recovery after traumatic brain injury. Journal of Family Theory and Review, 8(3), 386–397. doi: 10.1111/jftr.12150
   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. doi: 10.3109/09638281003775394
   PubMed Web of Science ®Google Scholar
• McCubin, M. A., & McCubin, H. I. (1991). Family stress theory and assessment: The resiliency model of family stress, adjustment, and adaptation. In H. I. McCubbin & A. I. Thompson (Eds.), Family assessment inventories for research and practice (2nd ed., pp. 3–32). Madison, WI: University of Wisconsin-Madison.
   Google 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. doi: 10.1080/02699050802530532
   PubMed Web of Science ®Google Scholar
• Nabors, N., Seacat, J., & Rosenthal, M. (2002). Predictors of caregiver burden following traumatic brain injury. Brain Injury, 16(12), 1039–1050. doi: 10.1080/02699050210155285
   PubMed Web of Science ®Google Scholar
• National Institute for Care and Clinical Excellence. (2014). Head injury: Assessment and early management. Retrieved January 31, 2017, from https://www.nice.org.uk/guidance/cg176/resources/head-injury-assessment-and-early-management-35109755592901
   Google Scholar
• Nochi, M. (1998). “Loss of self” in the narratives of people with traumatic brain injuries: A qualitative analysis. Social Science & Medicine, 46(7), 869–878. doi: 10.1016/S0277-9536(97)00211-6
   PubMed Web of Science ®Google Scholar
• Orsillo, S. M., McCaffrey, R. J., & Fisher, J. M. (1993). Siblings of head-injured individuals: A population at risk. The Journal of Head Trauma Rehabilitation, 8(1), 102–115.
   Google Scholar
• Ownsworth, T., & Haslam, C. (2016). Impact of rehabilitation on self-concept following traumatic brain injury: An exploratory systematic review of intervention methodology and efficacy. Neuropsychological Rehabilitation, 26, 1–35. doi: 10.1080/09602011.2014.977924
   PubMed Web of Science ®Google Scholar
• Perlesz, A., Kinsella, G., & Crowe, S. (1999). Impact of traumatic brain injury on the family: A critical review. Rehabilitation Psychology, 44(1), 6–35. doi: 10.1037/0090-5550.44.1.6
   Web of Science ®Google Scholar
• Perlesz, A., Kinsella, G., & Crowe, S. (2000). Psychological distress and family satisfaction following traumatic brain injury: Injured individuals and their primary, secondary, and tertiary carers. Journal of Head Trauma Rehabilitation, 15(3), 909–929. doi: 10.1097/00001199-200006000-00005
   PubMed Web of Science ®Google Scholar
• Ponsford, J., Kelly, A., & Couchman, G. (2014). Self-concept and self-esteem after acquired brain injury: A control group comparison. Brain Injury, 28(2), 146–154. doi: 10.3109/02699052.2013.859733
   PubMed Web of Science ®Google Scholar
• Ponsford, J., Olver, J., Ponsford, M., & Nelms, R. (2003). Long-term adjustment of families following traumatic brain injury where comprehensive rehabilitation has been provided. Brain Injury, 17(6), 453–468. doi: 10.1080/0269905031000070143
   PubMed Web of Science ®Google Scholar
• Riessman, C. K., & Quinney, L. (2005). Narrative in social work: A critical review. Qualitative Social Work: Research and Practice, 4(4), 391–412. doi: 10.1177/1473325005058643
   Google Scholar
• Riley, G. A. (2007). Stress and depression in family carers following traumatic brain injury: The influence of beliefs about difficult behaviours. Clinical Rehabilitation, 21(1), 82–88. doi: 10.1177/0269215506071279
   PubMed Web of Science ®Google Scholar
• Rivera, P. A., Elliott, T. R., Berry, J. W., & Grant, J. S. (2008). Problem-solving training for family caregivers of persons with traumatic brain injuries: A randomized controlled trial. Archives of Physical Medicine and Rehabilitation, 89(5), 931–941. doi: 10.1016/j.apmr.2007.12.032
   PubMed Web of Science ®Google Scholar
• Sady, M. D., Sander, A. M., Clark, A. N., Sherer, M., Nakase-Richardson, R., & Malec, J. F. (2010). Relationship of preinjury caregiver and family functioning to community integration in adults with traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 91(10), 1542–1550. doi: 10.1016/j.apmr.2010.07.012
   PubMed Web of Science ®Google Scholar
• Sander, A. M., Caroselli, J. S., High, W. M. J., Becker, C., Neese, L., & Scheibel, R. (2002). Relationship of family functioning to progress in a post-acute rehabilitation programme following traumatic brain injury. Brain Injury, 16(8), 649–657. doi: 10.1080/02699050210128889
   PubMed Web of Science ®Google Scholar
• Sander, A. M., Sherer, M., Malec, J. F., High, W. M., Thompson, R. N., Moessner, A. M., & Josey, J. (2003). Preinjury emotional and family functioning in caregivers of persons with traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 84(2), 197–203. doi: 10.1053/apmr.2003.50105
   PubMed Web of Science ®Google Scholar
• Sparkes, A., & Smith, B. (2008). Narrative constructionist inquiry. In J. Holstein & J. Gubrium (Eds.), Handbook of constructionist research (pp. 295–315). New York, NY: Guildford Press.
   Google Scholar
• Verhaeghe, S., Defloor, T., & Grypdonck, M. (2005). Stress and coping among families of patients with traumatic brain injury: A review of the literature. Journal of Clinical Nursing, 14(8), 1004–1012. doi: 10.1111/j.1365-2702.2005.01126.x
   PubMed Web of Science ®Google Scholar
• Wells, R., Dywan, J., & Dumas, J. (2005). Life satisfaction and distress in family caregivers as related to specific behavioural changes after traumatic brain injury. Brain Injury, 19(13), 1105–1115. doi: 10.1080/02699050500150062
   PubMed Web of Science ®Google Scholar
• Wengraf, T., & Chamberlayne, P. (2006). Interviewing for life-histories, lived situations and personal experience: The Biographic-Narrative Interpretive Method (BNIM). Shortest Short Guide to BNIM interviewing and interpretation. Unpublished manuscript.
   Google Scholar
• Whiffin, C. J. (2012). A study of family transition in the first year post-head injury: Perspectives of the noninjured members (Unpublished doctoral dissertation). The University of Southampton, Southampton, UK.
   Google Scholar
• Whiffin, C. J., Bailey, C., Ellis-Hill, C., & Jarrett, N. (2014). Challenges and solutions during analysis in a longitudinal narrative case study. Nurse Researcher, 21(4), 20–26. doi: 10.7748/nr2014.03.21.4.20.e1238
   PubMedGoogle Scholar
• Whiffin, C. J., Bailey, C., Ellis-Hill, C., Jarrett, N., & Hutchinson, P. J. (2015). Narratives of family transition during the first year post-head injury: Perspectives of the non-injured members. Journal of Advanced Nursing, 71(4), 849–859. doi: 10.1111/jan.12551
   PubMed Web of Science ®Google Scholar
• Williams, G. (1984). The genesis of chronic illness: Narrative re-construction. Sociology of Health and Illness, 6(2), 175–200. doi: 10.1111/1467-9566.ep10778250
   PubMed Web of Science ®Google Scholar
• Williams, S. J. (2000). Chronic illness as biographical disruption or biographical disruption as chronic illness? Reflections on a core concept. Sociology of Health and Illness, 22(1), 40–67. doi: 10.1111/1467-9566.00191
   Web of Science ®Google Scholar
• World Health Organization. (2017). Neurotrauma. Retrieved January 31, 2017, from http://www.who.int/violence_injury_prevention/road_traffic/activities/neurotrauma/en/.
   Google Scholar
• Yeates, G., Henwood, K., Gracey, F., & Evans, J. (2007). Awareness of disability after acquired brain injury and the family context. Neuropsychological Rehabilitation, 17(2), 151–173. doi: 10.1080/09602010600696423
   PubMed Web of Science ®Google Scholar
• Zeigler, E. (1999). Psychosocial issues for spouses of brain injury survivors. The Journal of Neuroscience Nursing: Journal of the American Association of Neuroscience Nurses, 31(2), 106–109. doi: 10.1097/01376517-199904000-00007
   PubMedGoogle Scholar