Archives of Physical Medicine and Rehabilitation
Volume 90, Issue 6 , Pages 939-946 , June 2009

Caregivers' Well-Being After Traumatic Brain Injury: A Multicenter Prospective Investigation

  • Jeffrey S. Kreutzer, PhD

      Affiliations

    • Department of Physical Medicine and Rehabilitation, Virginia Commonwealth University, Richmond, VA
    • Corresponding Author InformationReprint requests to Jeffrey S. Kreutzer, PhD, Dept of Physical Medicine and Rehabilitation, Virginia Commonwealth University, Box 980542, Richmond, VA 23298-0542
    • ,
  • Lisa J. Rapport, PhD

      Affiliations

    • Department of Psychology, Wayne State University, Detroit, MI
    • ,
  • Jennifer H. Marwitz, MA

      Affiliations

    • Department of Physical Medicine and Rehabilitation, Virginia Commonwealth University, Richmond, VA
    • ,
  • Cynthia Harrison-Felix, PhD

      Affiliations

    • Craig Hospital, Englewood, CO
    • ,
  • Tessa Hart, PhD

      Affiliations

    • Moss Rehabilitation Research Institute and Department of Rehabilitation Medicine, Jefferson Medical College, Philadelphia, PA
    • ,
  • Mel Glenn, MD

      Affiliations

    • Spaulding Rehabilitation Hospital, Boston, MA
    • ,
  • Flora Hammond, MD

      Affiliations

    • Carolinas Rehabilitation, Charlotte, NC

References 

  1. Boschen K, Gargaro J, Gan C, Gerber G, Brandys C. Family interventions after acquired brain injury and other chronic conditions: a critical appraisal of the quality of the evidence. NeuroRehabil. 2007;22:19–41
  2. Gan C, Campbell KA, Gemeinhardt M, McFadden GT. Predictors of family system functioning after brain injury. Brain Inj. 2006;20:587–600
  3. Sander AM, Caroselli JS, High WM, Becker C, Neese L, Scheibel R. Relationship of family functioning to progress in a post-acute rehabilitation programme following traumatic brain injury. Brain Inj. 2002;16:649–657
  4. Groom KN, Shaw TG, O'Connor ME, Howard NI, Pickens A. Neurobehavioral symptoms and family functioning in traumatically brain-injured adults. Arch Clin Neuropsychol. 1998;13:695–711
  5. Douglas JM, Spellacy FJ. Indicators of long-term family functioning following severe traumatic brain injury in adults. Brain Inj. 1996;10:819–839
  6. Ponsford J, Olver J, Ponsford M, Nelms R. Long-term adjustment of families following traumatic brain injury where comprehensive rehabilitation has been provided. Brain Inj. 2003;17:453–568
  7. Kreutzer JS, Gervasio AH, Camplair PS. Patient correlates of caregivers' distress and family functioning after traumatic brain injury. Brain Inj. 1994;8:211–230
  8. Kreutzer JS, Gervasio AH, Camplair PS. Primary caregivers' psychological status and family functioning after traumatic brain injury. Brain Inj. 1994;8:197–210
  9. Wade SL, Stancin T, Taylor HG, Drotar D, Yeates KO, Minich NM. Interpersonal stressors and resources as predictors of parental adaptation following pediatric traumatic injury. J Consult Clin Psychol. 2004;72:776–784
  10. Wade SL, Taylor HG, Yeates KO, et al. Long-term parental and family adaptation following pediatric brain injury. J Pediatr Psychol. 2006;31:1072–1083
  11. Campbell CH. Needs of relatives and helpfulness of support groups in severe head injury. Rehabil Nurs. 1988;13:320–325
  12. Engli M, Kirsivali-Farmer K. Needs of family members of critically ill patients with and without acute brain injury. J Neurosci Nurs. 1993;25:78–85
  13. Kreutzer JS, Devany C, Keck S. Family needs following brain injury: a quantitative analysis. J Head Trauma Rehabil. 1995;9:104–115
  14. Moules S, Chandler BJ. A study of the health and social needs of carers of traumatically brain injured individuals served by one community rehabilitation team. Brain Inj. 1999;13:983–993
  15. Marks JP, Daggett LM. A critical pathway for meeting the needs of families of patients with severe traumatic brain injury. J Neurosci Nurs. 2006;38:84–89
  16. Armstrong K, Kerns KA. The assessment of parent needs following paediatric traumatic brain injury. Pediatr Rehabil. 2002;5:149–160
  17. Hibbard MR, Uysal S, Kepler K, Bogdany J, Silver J. Axis I psychopathology in individuals with traumatic brain injury. J Head Trauma Rehabil. 1998;13:24–39
  18. Fann JR, Burington B, Leonetti A, Jaffe K, Katon WJ, Thompson RS. Psychiatric illness following traumatic brain injury in an adult health maintenance organization population. Arch Gen Psychiatry. 2004;61:53–61
  19. Kreutzer JS, Seel RT, Gourley E. The prevalence and symptom rates of depression after traumatic brain injury: a comprehensive examination. Brain Inj. 2001;15:563–576
  20. Seel RT, Kreutzer JS, Rosenthal M, Hammond FM, Corrigan JD, Black K. Depression after traumatic brain injury: a National Institute on Disability and Rehabilitation Research Model Systems multicenter investigation. Arch Phys Med Rehabil. 2003;84:177–184
  21. Mauss-Clum N, Ryan M. Brain injury and the family. J Neurosurg Nurs. 1981;13:165–169
  22. Derogatis LR. SCL-90 administration, scoring and procedures manual - II for the revised version and other instruments of the psychopathology rating scale series. Towson: Clinical Psychometric Research; 1983;
  23. Linn RT, Allen K, Willer BS. Affective symptoms in the chronic stage of traumatic brain injury: a study of married couples. Brain Inj. 1994;8:135–147
  24. Derogatis LR, Melisaratos N. The Brief Symptom Inventory: an introductory report. Psychol Med. 1983;13:595–605
  25. Gervasio AH, Kreutzer JS. Kinship and family members' psychological distress after traumatic brain injury: a large sample study. J Head Trauma Rehabil. 1997;12:14–26
  26. Gillen R, Tennen H, Affleck G, Steinpreis R. Distress, depressive symptoms, and depressive disorder among caregivers of patients with brain injury. J Head Trauma Rehabil. 1998;13:31–43
  27. Douglas JM, Spellacy FJ. Correlates of depression in adults with severe traumatic brain injury and their carers. Brain Inj. 2000;14:71–88
  28. Zung WW. A Self-Rating Depression Scale. Arch Gen Psychiatry. 1965;12:63–70
  29. Rappaport M, Hall KM, Hopkins K, Belleza T, Cope DN. Disability rating scale for severe head trauma: coma to community. Arch Phys Med Rehabil. 1982;63:118–123
  30. Ergh TC, Rapport LJ, Coleman RD, Hanks RA. Predictors of caregiver and family functioning following traumatic brain injury: social support moderates caregiver distress. J Head Trauma Rehabil. 2002;17:155–174
  31. Snaith RP, Bridge GW, Hamilton M. The Leeds scales for the self assessment of anxiety and depression. London: Psychological Test Publications; 1976;
  32. Whiteneck GG, Charlifue SW, Gerhart KA, Overholser JD, Richardson GN. Quantifying handicap: a new measure of long-term rehabilitation outcomes. Arch Phys Med Rehabil. 1992;73:519–526
  33. Harrison-Felix C, Newton CN, Hall KM, Kreutzer JS. Descriptive findings from the Traumatic Brain Injury Model Systems National Database. J Head Trauma Rehabil. 1996;11:1–14
  34. Derogatis LR. BSI 18: Brief Symptom Inventory 18. Minneapolis: NCS Pearson; 2000;
  35. Diener E, Emmons RA, Larsen RJ, Griffin S. The Satisfaction With Life Scale. J Pers Assess. 1985;49:71–75
  36. Hart T, O'Neil-Pirozzi TM, Williams KD, Rapport LJ, Hammond F, Kreutzer J. Racial differences in caregiving patterns, caregiver emotional function, and sources of emotional support following traumatic brain injury. J Head Trauma Rehabil. 2007;22:122–131
  37. Corrigan JD, Bogner JA, Mysiw WJ, Clinchot D, Fugate L. Life satisfaction after traumatic brain injury. J Head Trauma Rehabil. 2001;16:543–555
  38. Pavot L, Diener E. Review of the Satisfaction With Life Scale. Psychol Assess. 1993;5:164–172
  39. Traumatic Brain Injury Model Systems National Database Syllabus. Englewood: Craig Hospital, National Database and Statistical Center; 2006;
  40. Levin HS, O'Donnell VM, Grossman RG. The Galveston Orientation and Amnesia Test: a practical scale to assess cognition after head injury. J Nerv Ment Dis. 1979;167:675–684
  41. Guide for the Uniform Data Set for Medical Rehabilitation (including the FIM instrument), Version 5.1. Buffalo: State University of New York at Buffalo; 1997;
  42. Hamilton BB, Laughlin JA, Fiedler RC, Granger CV. Interrater reliability of the 7-level functional independence measure (FIM). Scand J Rehabil Med. 1994;26:115–119
  43. Granger CV. The emerging science of functional assessment: our tool for outcomes analysis. Arch Phys Med Rehabil. 1998;79:235–240
  44. Heinemann AW, Linacre JM, Wright BD, Hamilton BB, Granger C. Relationships between impairment and physical disability as measured by the functional independence measure. Arch Phys Med Rehabil. 1993;74:566–573
  45. Ottenbacher KJ, Hsu Y, Granger CV, Fiedler RC. The reliability of the functional independence measure: a quantitative review. Arch Phys Med Rehabil. 1996;77:1226–1232
  46. Gouvier WD, Blanton PD, LaPorte KK, Nepomuceno C. Reliability and validity of the Disability Rating Scale and the Levels of Cognitive Functioning Scale in monitoring recovery from severe head injury. Arch Phys Med Rehabil. 1987;68:94–97
  47. Boake C. Supervision rating scale: a measure of functional outcome from brain injury. Arch Phys Med Rehabil. 1996;77:765–772
  48. Centers for Disease Control and Prevention: Behavioral Risk Factor Surveillance System user's guide. Atlanta: Centers for Disease Control and Prevention; 1998;
  49. Nelson DE, Powell-Griner E, Town M, Kovar MG. A comparison of national estimates from the National Health Interview Survey and the Behavioral Risk Factor Surveillance System. Am J Public Health. 2003;93:1335–1341
  50. Dahmer ER, Shilling MA, Hamilton BB, et al. A model systems database for traumatic brain injury. J Head Trauma Rehabil. 1993;8:12–25
  51. Kessler RC, Chiu WT, Demler O, Merikangas KR, Walters EE. Prevalence, severity, and comorbidity of 12-month DSM-IV disorders in the National Comorbidity Survey Replication. Arch Gen Psychiatry. 2005;62:617–627
  52. Mintz MC, van Horn KR, Levine MJ. Developmental models of social cognition in assessing the role of family stress in relatives' predictions following traumatic brain injury. Brain Inj. 1995;9:173–186
  53. Livingston MG, Brooks DN, Bond MR. Patient outcome in the year following severe head injury and relatives' psychiatric and social functioning. J Neurol Neurosurg Psychiatry. 1985;48:876–881
  54. Livingston MG, Brooks DN, Bond MR. Three months after severe head injury: psychiatric and social impact on relatives. J Neurol Neurosurg Psychiatry. 1985;48:870–875
  55. Winstanley J, Simpson G, Tate R, Myles B. Early indicators and contributors to psychological distress in relatives during rehabilitation following severe traumatic brain injury: findings from the Brain Injury Outcomes Study. J Head Trauma Rehabil. 2006;21:453–466
  56. Novack T, Bergquist TF, Bennett G, Gouvier WD. Primary caregiver distress following severe head injury. J Head Trauma Rehabil. 1992;6:69–77

 Supported by the National Institute on Disability and Rehabilitation Research, US Department of Education (grant nos. H133A020516, H133A020509, H133A020510, H133A020513).

 No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit on the authors or on any organization with which the authors are associated.

PII: S0003-9993(09)00202-0

doi: 10.1016/j.apmr.2009.01.010

Archives of Physical Medicine and Rehabilitation
Volume 90, Issue 6 , Pages 939-946 , June 2009

Article Tools