‘The biggest thing is trying to live for two people’: Spousal experiences of supporting decision-making participation for partners with TBI

References

• Ponsford J, Downing M, Olver J, Ponsford M, Acher R, Carty M, Spitz G. Longitudinal follow-up of patients with traumatic brain injury: outcome at 2, 5, and 10-years post-injury. Journal of Neurotrauma 2014;31:64–77
   PubMed Web of Science ®Google Scholar
• Morton MV, Wehman P. Psychosocial and emotional sequelae of individuals with traumatic brain injury: a literature review and recommendations. Brain Injury 1995;9:81–92
   PubMed Web of Science ®Google Scholar
• Thomsen IV. Late psychosocial outcome in severe traumatic brain injury: preliminary results of a third follow-up study after 20 years. Scandinavian Journal of Rehabilitation Medicine Supplement 1991;26:142–152
   Google Scholar
• Colantonio A, Ratcliff G, Chase S, Kelsey S, Escobar M, Vernich L. Long term outcomes after moderate to severe traumatic brain injury. Disability and Rehabilitation 2004;26:253–261
   PubMed Web of Science ®Google Scholar
• Sloan S, Winkler D, Anson K. Long-term outcome following traumatic brain injury. Brain Impairment 2007;8:251–261
   Google Scholar
• Hoofien D, Gilboa A, Vakil E, Donovick PJ. Traumatic brain injury 10- 20 years later: a comprehensive outcome study of psychiatric symptomatology, cognitive abilities and psychosocial functioning. Brain Injury 2001;15:189–209
   PubMed Web of Science ®Google Scholar
• Dikmen SS, Machamer JE, Powell JM, Temkin NR. Outcome 3 to 5 years after moderate to severe traumatic brain injury. Archives of Physical Medicine and Rehabilitation 2003;84:1449–1457
   PubMed Web of Science ®Google Scholar
• Blais MC, Boisvert JM. Psychological and marital adjustment in couples following a traumatic brain injury (TBI): a critical review. Brain Injury 2005;19:1223–1235
   PubMed Web of Science ®Google Scholar
• Hammond FM, Davis CS, Whiteside OY, Philbrick P, Hirsch MA. Marital adjustment and stability following traumatic brain injury: a pilot qualitative analysis of spouse perspectives. Journal of Head Trauma Rehabilitation 2011;26:69–78
   PubMed Web of Science ®Google Scholar
• Gosling J, Oddy M. Rearranged marriages: marital relationships after head injury. Brain Injury 1999;13:785–796
   PubMed Web of Science ®Google Scholar
• Jumisko E, Lexell J, Soderberg S. Living with moderate or severe traumatic brain injury: the meaning of family members' experiences. Journal of Family Nursing 2007;13:353–369
   PubMed Web of Science ®Google Scholar
• Douglas JM, Spellacy FJ. Indicators of long-term family functioning following severe traumatic brain injury in adults. Brain Injury 1996;10:819–840
   PubMed Web of Science ®Google Scholar
• Wood RL, Yurdakul LK. Change in relationship status following traumatic brain injury. Brain Injury 1997;11:491–501
   PubMed Web of Science ®Google Scholar
• Godwin EE, Kreutzer JS, Arango-Lasprilla JC, Lehan TJ. Marriage after brain injury: review, analysis, and research recommendations. Journal of Head Trauma Rehabilitation 2011;26:43–55
   PubMed Web of Science ®Google Scholar
• Kreutzer JS, Marwitz JH, Hsu N, Williams K, Riddick A. Marital stability after brain injury: an investigation and analysis. NeuroRehabilitation 2007;22:53–59
   PubMed Web of Science ®Google Scholar
• Wood RL, Rutterford NA. Psychosocial adjustment 17 years after severe brain injury. Journal of Neurology, Neurosurgery & Psychiatry 2006;77:71–73
   PubMed Web of Science ®Google Scholar
• Thomsen IV. Late outcome of very severe blunt head trauma: a 10-15 year second follow-up. Journal of Neurology, Neurosurgery & Psychiatry 1984;47:260–268
   PubMed Web of Science ®Google Scholar
• Klonoff PS, Watt LM, Dawson LK, Henderson SW, Gehrels JA, Wethe JV. Psychosocial outcomes 1–7 years after comprehensive milieu-oriented neurorehabilitation: the role of pre-injury status. Brain Injury 2006;20:601–612
   PubMed Web of Science ®Google Scholar
• Umberson D, Williams K, Powers DA, Liu H, Needham B. You make me sick: marital quality and health over the life course. Journal of Health and Social Behavior 2006;47:1–16
   PubMed Web of Science ®Google Scholar
• Waite LJ, Luo Y, Lewin AC. Marital happiness and marital stability: consequences for psychological well-being. Social Science Research 2009;38:201–212
   Web of Science ®Google Scholar
• Kiecolt-Glaser JK, Newton TL. Marriage and health: his and hers. Psychological Bulletin 2001;127:472–503
   PubMed Web of Science ®Google Scholar
• Blais MC, Boisvert JM. Psychological adjustment and marital satisfaction following head injury. Which critical personal characteristics should both partners develop? Brain Injury 2007;21:357–372
   PubMed Web of Science ®Google Scholar
• Burridge AC, Williams WH, Yates PJ, Harris A, Ward C. Spousal relationship satisfaction following acquired brain injury: the role of insight and socio-emotional skill. Neuropsychological Rehabilitation 2007;17:95–105
   PubMed Web of Science ®Google Scholar
• Douglas JM, Spellacy FJ. Correlates of depression in adults with severe traumatic brain injury and their carers. Brain Injury 2000;14:71–88
   PubMed Web of Science ®Google Scholar
• Markman HJ, Renick MJ, Floyd FJ, Stanley SM, Clements M. Preventing marital distress through communication and conflict management training: a 4-and 5-year follow-up. Journal of Consulting and Clinical Psychology 1993;6:70–77
   Google Scholar
• Rogge RD, Bradbury TN. Till violence does us part: the differing roles of communication and aggression in predicting adverse marital outcomes. Journal of Consulting and Clinical Psychology 1999;67:340–351
   PubMed Web of Science ®Google Scholar
• Bracy C, Douglas J. Marital dyad perceptions of injured partners’ communication following severe traumatic brain injury. Brain Impairment 2005;6:1–12
   Google Scholar
• Gill CJ, Sander AM, Robins N, Mazzei D, Struchen MA. Exploring experiences of intimacy from the viewpoint of individuals with traumatic brain injury and their partners. Journal of Head Trauma Rehabilitation 2011;26:56–68
   PubMed Web of Science ®Google Scholar
• Umberson D, Montez JK. Social relationships and health: a flashpoint for health policy. Journal of Health and Social Behavior 2010;51:S54–S66
   PubMed Web of Science ®Google Scholar
• Mauss-Clum N, Ryan M. Brain injury and the family. Journal of Neuroscience Nursing 1981;13:165–169
   Google Scholar
• Sady MD, Sander AM, Clark AN, Sherer M, Nakase-Richardson R, Malec JF. Relationship of preinjury caregiver and family functioning to community integration in adults with traumatic brain injury. Archives of Physical Medicine and Rehabilitation 2010;91:1542–1550
   PubMed Web of Science ®Google Scholar
• Perlesz A, Kinsella G, Crowe S. Impact of traumatic brain injury on the family: a critical review. Rehabilitation Psychology 1999;44:6–35
   Web of Science ®Google Scholar
• McCabe P, Lippert C, Weiser M, Hilditch M, Hartridge C, Villamere J. Community reintegration following acquired brain injury. Brain Injury 2007;21:231–257
   PubMed Web of Science ®Google Scholar
• Crewe NM, Krause JS. Marital relationships and spinal cord injury. Archives of Physical Medicine and Rehabilitation 1988;69:435–438
   PubMed Web of Science ®Google Scholar
• Mellers BA, Schwartz A, Cooke ADJ. Judgment and decision making. Annual Review of Psychology 1998;49:447–477
   PubMed Web of Science ®Google Scholar
• Fellows LK. Current concepts in decision-making research from bench to bedside. Journal of the International Neuropsychological Society 2012;18:937–941
   PubMed Web of Science ®Google Scholar
• Knox L, Douglas JM, Bigby C. Whose decision is it anyway? How clinicians support decision-making participation after acquired brain injury. Disability and Rehabilitation 2013;35:1926–1932
   PubMed Web of Science ®Google Scholar
• Hill W, Scanzoni J. An approach for assessing marital decision-making processes. Journal of Marriage and the Family 1982;44:927–941
   Web of Science ®Google Scholar
• Kerr NL, Tindale RS. Group performance and decision making. Annual Review of Psychology 2004;55:623–655
   PubMed Web of Science ®Google Scholar
• Winter WD, Ferreira AJ, Bowers N. Decision-making in married and unrelated couples. Family Process 1973;12:83–94
   Web of Science ®Google Scholar
• Poole MS, Billingsley J. The structuring of dyadic decisions. In: Brinberg D, Jaccard J, editors. Dyadic decision making. New York, NY: Springer-Verlag; 1989. pp 216–248
   Google Scholar
• DeMaris A. The 20-year trajectory of marital quality in enduring marriages: does equity matter? Journal of Social and Personal Relationships 2010;27:449–471
   PubMed Web of Science ®Google Scholar
• Sillars AL, Kalbflesch PJ. Implicit and explicit decision-making styles in couples. In: Brinberg D, Jaccard J, editors. Dyadic decision making. New York, NY: Springer-Verlag; 1989. pp 179–215
   Google Scholar
• Kelley DL. Marital communication. Cambridge, UK: Polity Press; 2012
   Google Scholar
• Krueger DL, Smith P. Decision-making patterns of couples: a sequential analysis. Journal of Communication 1982;32:121–134
   Web of Science ®Google Scholar
• Charmaz K. Constructing grounded theory: a practical guide through qualitative analysis. London, UK: Sage; 2006
   Google Scholar
• Glaser BG, Strauss AL. The discovery of grounded theory. Hawthorne, NY: Aldine Publishing Company; 1967
   Google Scholar
• Strauss A, Corbin J. Basics of qualitative research: grounded theory procedures and techniques. London, UK: Sage; 1990
   Google Scholar
• Wuest J. Grounded theory: the method. In: Munhall PL, editor. Nursing research. 5th ed. Sudbury, MA: Jones & Bartlett Learning; 2011. pp 225–256
   Google Scholar
• Kennedy TJT, Lingard LA. Making sense of grounded theory in medical education. Medical Education 2006;40:101–108
   PubMed Web of Science ®Google Scholar
• Charmaz K. Constructionism and the grounded theory method. In: Holstein JA, Gubrium JF, editors. Handbook of constructionist research. New York, NY: Guilford Press; 2007. pp 397–412
   Google Scholar
• Lincoln YS, Lynham SA, Guba EG. Paradigmatic controversies, contradictions and emerging confluences, revisited. In: Denzin NK, Lincoln YS, editors. Sage handbook of qualitative research. 4th ed. Thousand Oaks, CA: Sage; 2011. pp 97–128
   Google Scholar
• Crotty M. The foundations of social research: meaning and perspective in the research process. St Leonards, Australia: Allen & Unwin; 1998
   Google Scholar
• Charmaz K. Grounded theory: objectivist and constructivist methods. In: Denzin NK, Lincoln YS, editors. Strategies of qualitative inquiry. 2nd ed. Thousand Oaks, CA: Sage; 2003. pp 249–291
   Google Scholar
• QSR International Pty Ltd. NVivo qualitative data analysis software. Version 9. Melbourne, Australia: QSR International Pty Ltd; 2010
   Google Scholar
• Rotondi AJ, Sinkule J, Balzer K, Harris J, Moldovan R. A qualitative needs assessment of persons who have experienced traumatic brain injury and their primary family caregivers. Journal of Head Trauma Rehabilitation 2007;22:14–25
   PubMed Web of Science ®Google Scholar
• Lefebvre H, Pelchat D, Swaine B, Gélinas I, Levert MJ. The experiences of individuals with a traumatic brain injury, families, physicians and health professionals regarding care provided throughout the continuum. Brain Injury 2005;19:585–597
   PubMed Web of Science ®Google Scholar
• Rosen-Grandon JR, Myers JE, Hattie JA. The relationship between marital characteristics, marital interaction processes, and marital satisfaction. Journal of Counseling and Development 2004;82:58–68
   Web of Science ®Google Scholar
• Yeates G. Towards the neuropsychological foundations of couples therapy following acquired brain injury (ABI): a review of empirical evidence and relevant concepts. Neuro-Disability and Psychotherapy 2013;1:108–150
   Google Scholar
• Godwin E, Chappell B, Kreutzer J. Relationships after TBI: a grounded research study. Brain Injury 2014;28:398–413
   PubMed Web of Science ®Google Scholar
• Sander AM, Maestas KL, Clark AN, Havins WN. Predictors of emotional distress in family caregivers of persons with traumatic brain injury: a systematic review. Brain Impairment 2013;14:113–129
   Web of Science ®Google Scholar
• Kurdek LA. Differences between partners from heterosexual, gay, and lesbian cohabiting couples. Journal of Marriage and Family 2006;68:509–528
   Web of Science ®Google Scholar
• Douglas J, Drummond M, Knox L, Mealings M. Rethinking social-relational perspectives in rehabilitation: traumatic brain injury as a case study. In: McPherson K, Gibson BE, Leplege A, editors, Rethinking rehabilitation: theory and practice. Boca Raton, FL: CRC Press; 2015 (in press)
   Google Scholar
• Levine B, Schweizer TA, O'Connor C, Turner G, Gillingham S, Stuss DT, Manly T, Robertson IH. Rehabilitation of executive functioning in patients with frontal lobe brain damage with goal management training. Frontiers in Human Neuroscience 2011;5:9
   PubMed Web of Science ®Google Scholar
• McPherson KM, Kayes N, Weatherall M. A pilot study of self-regulation informed goal setting in people with traumatic brain injury. Clinical Rehabilitation 2009;23:296–309
   PubMed Web of Science ®Google Scholar