Tag Archives: traumatic brain injury

Life after traumatic brain injury: Lessons from a support group

By Judy A. Schmidt October 8, 2018

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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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

A counselor looks at football

By Kevin Doyle January 29, 2018

I have been a lifelong football fan. I remember playing outside in the snow, emulating the National Football League (NFL) stars of the 1960s and then going inside to watch some of the fabled rivalries of the time, like the Kansas City Chiefs versus the Oakland Raiders. I grew up on Joe Namath’s Super Bowl guarantee, Franco Harris’s “Immaculate Reception,” and the undefeated Miami Dolphins team of 1972. My beloved Washington football franchise (yes, that name is a problem — but that is for another story) owned the 1980s (along with the San Francisco 49ers), and my brother and I sported Charley Taylor (42) and Larry Brown (43) jerseys in the previous decade. My two sons played the game at the high school level, both excelling and taking much from the experience. In short, I was raised on football in many ways.

All of these things will stay with me, but recent events have conspired to lead me to question of whether the sport in its current form is morally defensible. Recently, coverage of the death by suicide of former New England Patriots player, and convicted murderer, Aaron Hernandez, noted that his brain had advanced chronic traumatic encephalopathy (CTE), and a study published in 2017 in JAMA found evidence of CTE in 110 of 111 former NFL players.

Former NFL player Antwaan Randle El, a nine-year NFL veteran who is now in his late 30s, recently spoke out about his memory problems. He became the latest in a series of both high- and low-profile professional players known or alleged to have had serious brain issues possibly due to their football careers. This includes well-known players such as Junior Seau, Dave Duerson, Mike Webster and Frank Gifford.

The national discourse has been stirred by Steve Almond’s searing Against Football: One Fan’s Reluctant Manifesto; the film Concussion, based on the work of forensic pathologist Bennet Omalu and the work of Jeanne Marie Laskas in her article for GQ titled Game Brain; as well as pro football works such as Gregg Easterbrook’s The Game’s Not Over: In Defense of Football and Mark Edmundson’s Why Football Matters: My Education in the Game.

What, then, is the role of the professional counselor in this debate — or is there one? I submit that counselors in a variety of settings have a responsibility to be aware of this issue that is currently facing our culture, and there are several reasons why.

First, this appears to be a significant safety issue for a segment of our population, namely those individuals who have either played football in the past or are currently playing. No less an authority than the Mayo Clinic has reported that symptoms such as aggression, motor impairment, tremor, memory loss, irritability and focusing problems are associated with CTE.

If an adult male were to report symptoms such as these in counseling, it could be prudent to check to see if the client was once a football player. Referral for additional medical assessment could be an appropriate course of action, although currently, no effective treatments for CTE-related symptoms seem to be available. In fact, a definitive diagnosis cannot be made until tests of the brain can be conducted after an individual’s death.

For players currently involved in football, repeated concussions could be placing those individuals at increased risk and should be monitored. Most levels of play, including the NFL and NCAA, have put so-called “concussion protocols” in place to prevent players from continuing to play until they have received medical clearance. Although counselors would likely not play a leading role in these determinations, it would be advisable for counselors working on college campuses, with professional football players or even at lower levels (high school, middle school, youth football) to be aware of them and to support efforts to protect player safety.

Second, the question of whether to allow children to play football has become an emotional and sometimes conflict-ridden debate within families. Participation rates in both high school and youth football have widely been reported to be declining and show no signs of changing in the near future, according to numerous sources.

Counselors routinely work with children and families, and reaching a decision about whether a child should play football can be difficult. An informed decision must balance the potential safety concerns associated with the sport and the potential benefits of playing the sport, including physical activity and learning about teamwork and discipline. In some families, football is seen as a rite of passage — something that adolescent males (and, in some cases, females) engage in as part of the maturation process. In some cases, it may be the child who desperately wants to play, while the parents are warier. In other cases, parental pressure on a child to participate may be the driving issue. In either instance, a counselor, whether school-based or community-based, may be in a position to help the family make this decision. Knowledge of some of the relevant issues is essential to any effort to be of assistance.

Third is the reality that any societal issue can make its way into a counseling session. This is not to imply that we as counselors need to be experts on any and all social and societal issues. However, we do have a responsibility to be aware of burgeoning issues facing our culture and to be ready to discuss or address them —or at least to listen to our clients do so.

Many of us no doubt had clients with opinions about the most recent presidential election. Their thoughts naturally made their way into counseling sessions. Our own personal feelings aside, we had a responsibility as counselors to listen, to consider our clients feelings and opinions, and to ponder what role, if any, these thoughts contributed to the stressors they were facing. Likewise, we must strive as counselors to stay informed about myriad issues of relevance to our clients. Societal question such as same-sex marriage, health care, immigration and employment barriers for those with criminal convictions, to name a few, play out in our clients’ lives on a daily basis.

Granted, the issue of football may pale in comparison to some of these, but we have a responsibility nonetheless to pay attention, to inform ourselves and to monitor the debate, because it may well come up in a counseling session with an individual or family. If we are unaware of this issue (or another one), we may need to do further research in between sessions or, in extreme cases, even consider referring our client to another provider with more knowledge of the issue he or she is facing.

Finally, there are social justice issues to be considered, consistent with the counseling profession’s recent emphasis in this area. One would have to have been living under the proverbial rock not to have noticed the emotional national dialogue around NFL players sitting or kneeling during the playing of the national anthem. Started by former San Francisco 49er quarterback Colin Kaepernick in 2016, this protest has spread to other players and teams and led to an increasingly hostile “conversation” about the form of the protest itself, overshadowing the issue of police brutality that Kaepernick sought to highlight.

The various authors I noted earlier identified numerous concerns more specifically related to football that are of a social justice nature. Approximately 68 percent of NFL players are African American, and the treatment of players has been criticized by some as evoking memories of slavery by the so-called “owners” of the franchises. Anyone who has ever watched the “meat market” known as the NFL Combine, which consists partly of athletes’ bodies being examined by prospective employers (owners), and which is now nationally televised, cannot help but notice this parallel. With the average NFL career lasting less than four years and contracts, even when lucrative, not being guaranteed in case of injury, discerning individuals can easily raise legitimate social justice questions.

In summary, a growing national conversation about football, its viability, its safety and its future is becoming difficult to ignore. Counselors at various levels and in various settings have a responsibility not only to be aware of this conversation, but also to consider its significance in relation to the clients with whom we work. Engaging in this conversation is consistent with current calls within the profession for social justice.

 

 

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Kevin Doyle is a licensed professional counselor in Virginia and an associate professor in the counselor education program at Longwood University. He has also coached youth, high school and adult sports for the past 30 years. Contact him at doyleks@longwood.edu.

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.