Introduction
Statement of the Problem
Each year over two million Americans experience a traumatic brain injury (TBI). Five hundred thousand individuals are hospitalized and 50,000 will suffer long-term debilitating effects (National Head Injury Foundation [NHIF], 1995). After sustaining a brain injury, the survivor probably will not be fully cognizant of the potential cognitive, emotional, behavioral, and physical changes he or she has undergone. The survivor may return as a changed person to his or her family, community, job or school. Dealing with the head injury will place demands on both the survivor’s family and society in general. Many survivors of TBI will require rehabilitation services. Young survivors may be eligible for special education services in schools under the Individuals with Disabilities Education Act [IDEA] of 1990 (Individuals with Disabilities Act of 1991; Legislative history of Education of the Handicapped Act Amendments of 1990). Because of TBI’s toll on survivors and their families and the resultant demands on society, the work place, and schools, there is a need for further understanding of TBI.
Purpose of the Study
In order to best strategize possible rehabilitative and compensatory techniques to manage TBI, it is important for survivors, their families, educators, and other interested parties to become well informed of the many issues surrounding TBI. TBI can be a frightening, lonely and confusing ordeal. It was the purpose of this study to offer insight into TBI from the perspective of survivors of TBI, using a qualitative, descriptive research design. Information secured from educational, medical, psychological, and rehabilitative domains was analyzed. A survey addressing issues of significance to the survivors of TBI was undertaken. The results were synthesized to present a multi-perspective view of TBI. It was hoped that this information would enlighten survivors, educators, and others as to the concerns and problems of TBI survivors.
The Research Questions
Ten research questions were devised to further understand the TBI condition and its impact upon survivors. The research questions were:
- How did known medical predictors of recovery (e.g., length of unconsciousness) affect outcome as measured by work status?
- Were cognitive and other assessments (e.g., neuropsychological) performed to evaluate the traumatic brain injury?
- What cognitive, emotional, behavioral, physical, executive, and perceptual motor deficits occurred as a result of TBI?
- What emotions and feelings about having gone through a TBI did survivors display at the time of injury and do they continue to display now?
- How did survivors rate providers of emotional support?
- What kind of rehabilitation, if any, did the TBI survivors receive?
- What level of satisfaction did the survivors have with the types of treatment and information they received?
- Were the survivors of TBI satisfied with the degree of coordination and cooperation which they perceived existed between care-giving professionals and institutions?
- What kinds of accommodations, if any, did the survivors receive at school and at work?
- What devices did the survivors find most useful in coping with their TBI-engendered deficit areas?
Definition of Terms
Traumatic brain injury (TBI) is a closed or penetrating head wound injury to the brain caused by a traumatic insult to the head from an external physical force that may produce a diminished or altered state of consciousness (NHIF, 1995). It is distinguished from other disorders of the brain such as congenital disorders or events such as strokes, but it is also a diagnosis which includes a vast array of sequelae, conditions, symptoms, and outcomes. A survivor of traumatic brain injury is someone who has sustained such an injury.
Limitations of the Study
For the purposes of this study the term tbi survivor was limited to those persons who have maintained or regained sufficient cognitive presence to participate in the survey process. This represents a limitation of the study as some survivors of TBI were not able to participate, and some only had partial capacities to participate, depending on the extent of their injuries and deficits and the stages of their recovery. A second limitation of the study was that the survey findings were based on self-report, not objective evaluation. The issue of the validity of self-report data was addressed by Soderback, Ekholm, and Caneman (1991). They reported that in several studies individuals’ assessments of their own degrees of disability were found to be compatible with data provided by rehabilitation team personnel, families, and friends. Thus, there are theoretical grounds to support the validity of self-report data.
A third limitation of the study was that the survey was a convenience survey made up of volunteers. The participants were not randomly selected from a pool of individuals. Everyone in the pool who had had a TBI and wished to participate became a study participant.