Life after traumatic brain injury: Lessons from a support group

Support groups are wonderful opportunities for people with similar life experiences to meet each other, share their stories and encourage one another. Group members benefit from learning coping strategies and everyday tips for dealing with various experiences. For people with traumatic brain injury (TBI), support groups offer informal opportunities for understanding a shared experience that greatly changed their lives, often within a few seconds’ or minutes’ time. They are left with physical, cognitive and emotional outcomes that impact their relationships, work and independence, often leading to loneliness and isolation.

As noted by the Brain Injury Association of America, more than 2.5 million adults and children experience a TBI in the United States each year, and support groups play a vital role in their continued recovery and re-entry to everyday life. A TBI dramatically interrupts life for these individuals and their families. Extended hospitalizations for physical recovery and long-term cognitive training for rewiring the brain alter all aspects of life, with treatment continuing for up to a year after the incident.

 

Effects of TBI

The effects of TBI are varied and highly individualized. The extent of the physical and psychosocial impacts depends on the type of injury (closed, open or acquired) and the severity of the injury. Thus, depending on the area of injury, people with TBI may deal with deficits in memory, executive functioning issues and poor judgment.

Frontal lobe injuries may lead to changes in mood and personality, difficulty making decisions and difficulty with expressive language, all of which are executive functions.

Injuries to the parietal lobe, which helps with perceptual abilities, may lead to difficulties naming words (anomia), finding words (agraphia) or reading (alexia), as well as problems with perceptual abilities that integrate sensory information. The ability to distinguish right from left may also be affected.

Damage to the temporal lobe may involve hearing loss, Wernicke’s aphasia (difficulty grasping the meaning of spoken language), problems categorizing information such as objects and short-term memory problems.

Brain injuries to the occipital lobe, which controls our vision, may lead to visual field problems, distorted perception and difficulty with reading, writing and word recognition.

Injury to the base of the skull at the site of the cerebellum creates difficulties with balance, equilibrium and coordination, as well as slurred speech.

Acute and long-term rehabilitation from TBI involves physical, occupational and speech therapy, as well as cognitive neuropsychological evaluations. As individuals recover from the physical damage, it is important for counselors to be a part of the rehabilitation team to manage adjustment to the physical injuries, acute stress and cognitive disability. In addition, the psychosocial aspects of TBI are very disruptive. They can be long-lasting as these individuals and their families begin to adapt to everyday life. Counselors are needed to provide individual and family counseling, as well as psychoeducation about TBI and recovery.

 

Psychosocial aspects of TBI

The psychosocial aspects of TBI are also related to the area of brain damage. People with frontal lobe damage may have difficulty making decisions, maintaining attention to tasks and controlling impulsive behaviors.

When the parietal lobe is damaged, difficulties occur with eye-hand coordination, reading, math and writing.

Temporal lobe damage interferes with communication skills, learning and memory. Learning difficulties due to recognition and visual field problems may result from occipital lobe damage.

In assisting people with TBI and their families, it is important to understand how psychosocial areas of life are affected and how these areas impact the potential return to daily living. For example, an individual may not return to his or her pre-injury abilities and can experience problems returning to work or school. Difficulties with problem-solving, understanding others’ emotions and social cues, or just being able to carry on a conversation may isolate the person with the TBI and increase his or her feelings of loss. Other areas of life that may be affected include the ability to drive, participate in sports and exercise, which can create deficits in the person’s social life. Problems with executive functioning can lead to challenges making sound decisions. Because safety is a major concern, the individual with a TBI may need to be monitored consistently by family, which can lead to tensions and other problems.

These are all skills that most of us take for granted or complete without much planning and forethought. But for individuals with TBI, family and personal relationships can grow strained, and the ability to build new relationships is impacted. The person’s independence and self-esteem suffer greatly.

 

Lessons learned

As a rehabilitation counselor for an acute inpatient rehabilitation program, I work with individuals who have TBIs, as well as their families, to provide counseling for stabilization, adjustment to disability and assistance with developing coping strategies. Providing support to these patients and their families as they begin realizing the extent of the brain damage and start dealing with feelings of loss is a crucial part of recovery.

For three years, I facilitated a monthly outpatient support group for people with TBI and found the experience fascinating. Hearing stories of people having car accidents, motorcycle accidents, work accidents, anoxia (deprivation of oxygen) and other unexpected accidents was difficult and often heart-wrenching. Yet these shared experiences forged a bond among group members that was undeniable and very moving.

They shared what it was like to not remember exactly what had happened to cause their brain injury. They shared what it was like to lose track of time and details and to have to trust the information told to them by health care providers, family members and friends. The fact that they each had “lost a period of time” from their lives and hadn’t been the same since seemed to build a sense of trust and caring among the group.

I soon learned that as a rehabilitation counselor, I could understand the medical, cognitive, vocational and emotional results of their injuries, but I couldn’t fully appreciate the daily psychosocial impact that their injuries had taken and continued to take on their lives.

The time since being injured varied among the support group members — anywhere from two years to 18 years. Regardless, the psychosocial effects they experienced were extensive. They talked about their school and work being interrupted, about having to settle for less challenging options or not being able to pursue their goals at all. Some shared tales of broken marriages and relationships, of losing custody of their children.

Others talked about losing their sense of independence because they had to rely on their families for almost everything. Some could no longer live at home due to the need for constant supervision, so they had to learn to live in group homes. Pursuing sports or other recreation choices was hard because of physical limitations. Another significant loss was no longer being able to drive and depending on others for transportation. The lack of money for “extras” was particularly difficult for those group members with children.

Holidays posed another challenge for these support group members because of sensory issues with noise, lights and too many people talking at once. Others discussed experiencing the stigma of having a TBI and being considered “different now” by family members and friends. This was felt particularly strongly at social gatherings, where family and friends made infrequent contact with them. Isolation and loneliness were prevalent themes in their stories. Depression, anxiety and low self-esteem made daily life a struggle.

Research conducted by Jesse Fann and colleagues in 2009 and by Annemieke Scholten and colleagues in 2016 and subsequently published in the Journal of Neurotrauma shows that the rate of depression during the first year after a TBI is 50 percent. The rate is close to 60 percent within seven years after the TBI. So, it is crucial for counselors to have this awareness of serious mental health issues in people with TBI to properly assist them and their families in seeking appropriate treatment.

Members of the support group I facilitated discussed that being on medication was difficult due to the side effects and to the cost of the medication if they had little or no insurance. They felt that cognitive retraining programs and daily psychosocial programs modeled after those for people with serious and persistent mental illness helped tremendously. The aspects of these programs that they reported helping most were receiving cognitive behavior therapy and continuing to learn more about TBI. The psychosocial programs were highly regarded because of the increase in social activities, access to vocational rehabilitation and supported employment services, and integration back into the community.

At times, the support group was difficult to manage because of the cognitive and emotional deficits with which the individuals dealt. However, the members had their unique ways of helping each other and redirecting the conversations. It was very clear that they respected one another.

Our time together as a support group transformed us into a unique family, particularly because the group remained fairly constant in its membership. The members trusted each other and understood the struggles being discussed. However, they also felt safe in correcting each other and being bluntly honest (which people with TBI are). We did have some new members join along the way. They were welcomed with open arms, and veteran members exhibited an unabashed eagerness to help. It was always interesting to hear about the creative accommodations that our members developed to live life each day and how the professionals in their lives assisted them.

As the group grew stronger, the members felt it was important for me to record what they wanted others to know about TBI and people with TBI. Their primary messages were:

• “Conversation and expressing one’s self can be difficult.”
• “People with TBI may not like the same things as they previously did, so don’t force us.”
• “Tasks may take longer for people with TBI, so wait for us.”
• “Social situations can overload people with TBI.”
• “TBI affects everyone around the person.”
• “Those with TBI are still the same people they were before.”

During my time with the support group, I learned many lessons. First of all, I learned that life after a TBI requires constant adjustments that must be made each day to be productive and involved. I also came to understand that time does offer healing when abundant respect and empathy are present. But most important, I learned about living life as it happens from a wonderful group of resilient individuals.

 

 

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Judy A. Schmidt is a clinical assistant professor in the clinical rehabilitation and mental health counseling program in the Department of Allied Health Sciences, and an adjunct clinical assistant professor in the Department of Physical Medicine and Rehabilitation, School of Medicine, at the University of North Carolina (UNC) at Chapel Hill. She is the rehabilitation counselor for the acute inpatient rehabilitation unit for UNC Hospital, where she provides counseling services to patients and their families after traumatic brain injury, stroke, spinal cord injury and other neurological trauma. Contact her at judy_schmidt@med.unc.edu.

 

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