At present time, there are 3.2 million to 5.3 million people in the United States who are living with a traumatic brain injury (TBI)-related disability. Medical advancements have made it possible for individuals to survive a brain injury causing the mortality rate of TBI to decrease significantly over the years, but the disability rate has not. This means that many TBI survivors engage in a reduced number of leisure activities, which are more sedentary and less social.
The statement that “TBI is not just an event it’s a process”, describes the chronic brain damage and neuropsychiatric problems that one suffers from after largely caused by the disease accelerative changes with a long-term effect causing an increased risk of medical co-morbidities as well as a psychosocial and functional decline after a brain injury (Hammond et al).
The symptoms of TBI vary from one person to another, and although some symptoms might resolve completely, others, more commonly as a result of moderate and severe TBIs, can result in symptoms that persist and become a long-term problem. These symptoms can be disabling and dramatic, which leads to complications, including neurologic and behavior health problems and in some cases re-hospitalizations.
Brain Injury has been identified as an accelerant to psychiatric conditions such as thinking problems, executive dysfunction, emotional response to injury and disability, difficulties with self-regulation and impulse control, memory problems, compliance with treatment, social withdrawal, and social role changes and isolation. The effects of brain injury also manifest in varying physical, communicative, psychosocial, cognitive and behavioral deficits at different points throughout an individual’s life span and result in debilitating disease, disability and poor quality of life. A study by Dawson and Chipman, 1995, which involved 454 Canadians, with an average 13 years post TBI showed that:
- 66% required ADL assistance
- 75% not working
- 90% dissatisfied with social interaction
- 47% not talking with others by telephone
- 27% never socialize at home
- 20% never visits others
The consequences of brain injury are endured over the individual’s lifetime and long-term affects in all aspects of their life, relationships with others and independence in accessing health services.
It is easy to lose sight of the after-effects of TBI. More often than not, life is never the same after a TBI due to post-traumatic symptoms’ considerable negative impact on the quality of life for the individuals who sustained a traumatic brain injury (TBI). Returning to normalcy might take months or even years. But even then, it will never be the same in the following areas: job, profession, skills, relationships, family, friends, life activity focus, home, residence ownership, membership in community, perception of individual by others/ positive feedback, and participation with others in activities of value.
The alteration in the individual’s life normalcy can trigger a sense of loss of control that the individual affected by brain injury usually suffers from through demonstration of impulsivity, aggression, mood changes and irritability associated with low community reintegration at 8.8 years post-TBI (Winkler et al, 2006).
Although there are many life-changing impacts of TBI, evidence exists to support that persons with TBI can function positively post-injury.
Surprisingly, only a handful of research has empirically examined the positive aspects of quality of life for persons with TBI (e.g., Kincaid, 1998; Steadman-Pare, Colantonio, Ratcliff, Chase, & Vernich, 2001).
Quality of life has been overlooked for the most part of rehabilitation. As attaining the ultimate goal of improving quality of life can be challenging due to the complex nature of TBI. The injury creates its own set of unique problem that requires a dynamic rehabilitation process that is challenging and can be more costly than a traditional home rehabilitation model.
Rehabilitation clearly has a role especially in the home and community level but the current rehabilitation requires considerable progress. It requires a more proactive approach than a reactive approach to anticipating the needs that may arise especially after they are discharged from an in-patient rehabilitation setting or they have been home for years.
How can we improve the rehabilitation approach to improve one’s quality of life after a brain injury?
- Early recognition of barriers in the rehabilitation phase
- Training for support and caregiver systems
- Identification of resources that address the co-occurring issues
- Participation in activities that have meaning
- Development of extended supports to maintain the person in the community over the course of their life
- Correcting the issues which maintain disability-related poverty and health disparity
Restoring quality of life has been an elusive goal to attain for most individuals with TBI and can be attributed to the fact that quality of life is based on self-report and a comprehensive evaluation. An individualized approach focused on independence, and improving social connectedness impacting their work/life balance, spirituality, personality, economy, caregiver’s mental and physical health (Koskinen S.), and personal biases, with an emphasis on environment, physical and mental health, education, recreation, and leisure is highly desirable.
Prolongation of life, without regard for the quality of that life, is not a universally desired goal. It is necessary to consider each individual’s assessment of what makes life worth living. For TBI individuals, a high level of physical and social independence, were further positive determinants of a perceived high quality of life (Kreuter).
