Professional Papers
Traumatic Brain Injury and Quality of Life
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The era of traumatic brain injury is upon us and will not go away. New methodologies to help families need to be formulated because the medical model cannot handle the long term needs of these patients. Therefore, the family is left to care for the survivor. Greater awareness is needed by family members to recognize the importance that family environment may have on the quality of life for the brain injured survivor and, in turn, the family's quality of life. Families can significantly improve the quality of life for the survivor if they embrace the characteristic of family cohesion and adaptability.
Demographics
A traumatic brain injury (TBI) occurs every 15 seconds in the United States and is the most frequent cause of death and disability for persons under 45 years of age. The majority of these persons are in the 18-30 year-old age group, from lower socio-economic levels, and habitual drug users with a history of high risk behavior. A New Challenge for Medicine The era of traumatic brain injury is only about 25 years old, and as such, is still in its infancy relative to injury sequalae and long term treatment. Prior to this era, most people sustaining significant brain injury did not survive.
With the advent of superior medical technology and delivery of emergency services, it became possible to live through the injury. The result was persons sustaining traumatic brain injury were reentering society to live out their lives in full. The medical model does an excellent job of stabilizing the injured person; then generally discharges them to family members or other loved ones. However, family members and loved ones are often ill prepared to care for the survivor who often has an array of secondary complexities. The impact of the injured person's reentry into the family, and what can be done to help, is the subject of this article.
Impact on Family Brain injury has a dramatic impact on the family system. The foremost family problem is the adjustment process to the survivors' personality changes and impulsivity. Secondly, the loss of memory impairs persons with brain injury to such an extent that they are embarrassed about meeting others, remembering names, and carrying on a normal conversation. These changes cause the survivor to seek isolation and endure depression which ultimately effects their family members. Together, personality changes, impulsivity and loss of memory decrease the quality of life for the brain injured person and their family. In a recent study by Gillen (1998) more than half of the families with traumatically brain injured members met the diagnosis for depression. The question then becomes what can medical professionals and social service representatives do to help families who are struggling with the caregiver role? In the case of family members, they need to be instructed on how they can provide the greatest help to their injured family member to improve the quality of life for the injured person, and therefore, the entire family.
Cohesion and Adaptive Characteristics Effect Quality of Life
In a 1998 study of 41 family members and 41 persons with a traumatic brain injury, Bull reported that cohesive and adaptive family traits were significantly correlated with an increase in the survivor's quality of life. Highly cohesive and adaptive families had survivors who scored higher in quality of life measures. The quality of life measures included: (a) the ranking of problems (Problems Checklist) usually associated with traumatic brain injury, (b) independent living abilities, and (c) social skills. These quality of life measures were then correlated with various predictors of quality of life including the family type traits: adaptability and cohesion. Family adaptability is the extent to which the family system is flexible and able to change its power structure, role relationships, and relationship rules in response to situational and developmental stress. Family cohesion is the degree to which family members are separated from or connected to their family relative to emotional bonding members have for one another.How may the helpful concepts of cohesion and adaptive characteristics be communicated to family members? A possible dissemination is to request health care and rehabilitation professionals to present the information at time of injury. The problem with educating families about traumatic brain injury is most families are not initially prepared to accept the possibility of long-term deficits. Family members are often confident at the outset that their family member will "bounce" back and be the same person they were before the injury. This early form of denial is helpful as the reality of the disability would be too much to accept with all of the other early trauma ramifications. However, when the anticipated recovery does not occur after a few years, these same family members begin to realize the long term implications of this injury. Therefore, about the time the family is willing to accept the reality of traumatic brain injury, the medical model has pulled out. Monies for assistance one to two years post injury are scarce just when the realization for additional help is most prevalent.
After Care Model
Therefore, an after care model would be most beneficial when the families are at the stage where they are ready to listen. At this time, families want to discuss long term deficits and possible strategies to assist with this "permanent" injury. It maybe unrealistic to expect families to change their characteristics. However, there may never be a better time to discuss change then when the family is hungry to desperate to learn. This is the time to instruct families to embrace the need for more cohesive and adaptive traits within their system. Bull (1998) advocated for monies to help with this aftercare education for families with persons who have sustained a TBI. The educational efforts will be more fruitful if they are presented to families one to two years post injury when they are ready and prepared to listen.
Russell Bull is currently a full time rehabilitation counselor for the state of Arizona in Flagstaff. He completed his doctorate in educational psychology from Northern Arizona University in December 1998 and earned the Certified Rehabilitation Counselor distinction in October 1999. He has over 14 years of working with persons who have disabilities in both vocational and independent living settings. Russ also teaches graduate and undergraduate educational psychology courses at Northern Arizona University and Coconino Community College in Flagstaff. He is the coordinator of the Independent Living Services program in Flagstaff, and an adjunct instructor at Northern Arizona University.
References
Bull, R. (1998). Traumatic brain injury and quality of life within family settings. Unpublished doctoral dissertation, Educational Psychology, Northern Arizona University, Flagstaff, AZ.
Dell Orto A. E., & Power, P. (1994). Head injury and the family, Winter Park, Florida: PMD Publishers Group. Gillen, R., (1998). Distress, depressive symptoms & depressive disorder among caregivers of patients with brain injury. Journal of Traumatic Brain Rehabilitation. 13(5). 88-110.
Jorge, E., Robinson, R., & Arndt, S. (1993). Are there symptoms that are specific for depressed mood in patients with traumatic brain injury? Journal of Nervous and Mental Disease, 181(2), 91-99.
Olson, D. (1992). Family inventories. St. Paul: Family Social Science, University of Minnesota.
Webb, C. R., Wrigley, M., Yoels, W., & Fine, P. (1995). Explaining quality of life for persons with TBI two years after injury. Archives of Physical Medical Rehabilitation. 76(12), 113-1119.