Centre for Neuro Skills
While there are no prerequisites for the job, parenthood is a lifelong responsibility. It is also one of the most fulfilling and important roles a person can have in life. Brain injury, unfortunately, impacts individuals without regard to their roles and responsibilities.
Persons with brain injury are challenged in their ability to care for themselves, much less others, making parenting more difficult. Yet, in order to achieve long-term success post-injury, family reintegration, including parenting, is imperative. And the best way to achieve this is through skill redevelopment during postacute rehabilitation.
The Basics Still Apply, Before and After Brain Injury
Parenting requires the ability to not only care for oneself, but to do so often in deference to caring for children. Parents are frequently required to subjugate their needs and wishes to the importance of providing for the well-being, nurturing, education, safety, development, and future of their children.
This requires a mindful approach, planning with a spouse or partner, or managing alone with family and friends to provide for housing, food, clothing, and education all the while seeking to instill family and societal values. Most parents want their children to be safe and to have a future that is the same as or better than their own.
Raising children presents a range of personal challenges to most parents. It may require developing a willingness for selflessness while acquiring skills as a teacher, mentor, role model, and disciplinarian, at least. Many couples acknowledge that arriving at a parenting style can be arduous and the source of conflict in their relationship as they negotiate stylistic differences and determine and articulate behavioral, educational, value, and moral expectations for their children.
Relearning Parenting Skills is Vital to Family Integration
After brain injury, however, individuals tend to become more focused on themselves, and fail to provide the same kind of parenting approach/skills as they exerted prior to injury. They are likely to be much less involved in child rearing, in general, failing to participate in determining, communicating, and facilitating goals for their children. These responsibilities either are not met well, or fall entirely to a non-injured spouse, partner, or family member.
Active discussions must be undertaken with an individual and/or couple to raise awareness of the importance of assessment and intervention for parenting skills, and to actively intervene to redevelop such skills and focus within the family. Family members must be relied upon to build an understanding of parenting skills and styles prior to injury as well as parenting-related family dynamics so as to serve as goals for treatment.
These efforts must focus not only on reacquisition of parenting styles and skills, but also on parental engagement with children in accordance with the manner in which they engaged prior to injury. Finally, teaching must include knowledge of common reactions children may have to the temporary or permanent loss of a parent to injury. Counseling can be extremely effective in raising awareness of these issues and changing behaviors within a family system. Counseling can incorporate other family members such as spouses/partners, children themselves, or key extended family members with meaningful insights such as close aunts/uncles or grandparents. Re-engagement within a family system to the various roles one played prior to injury is critical to the long-term success of family reintegration.
Individuals who sustain brain injury face a unique challenge with their health professionals. Brain injury is now widely viewed as a disease in the medical field, however patients are not yet granted the benefits and opportunities in treatment as are necessary for disease management. Increasing awareness of brain injury as a disease, and exploring the challenges of brain injury treatment will help us reevaluate our current system.
Brain Injury as a Disease
A brain injury is remarkably complex. Emerging evidence suggests that, like cancer, brain injury may actually be comprised of a number of distinct diseases that vary by the etiology of the injury, the nature of the injury, co-morbid health conditions prior to and since the injury, and factors such as gender, race, age, for example.
When the brain is injured, consequential effects often occur within immune, endocrine, and autonomic nervous systems’ functions. Persons with brain injury can become very sick, very quickly, seemingly only heralded by relatively minor early symptoms. Though we do not fully understand why this heightened period of illness occurs, it is likely a result, in some capacity, of the changes to the body’s systems’ functions.
Challenges of Brain Injury Treatment
Medical professionals working within the confines of our current system are often unable to dedicate sufficient time to a patient with brain injury in order to address the full scope of his or her injury, which includes cognitive, behavioral, communicative, and/or physical disabilities. Furthermore, these medical professionals are rarely able to stay current enough on the case to identify advisable and inadvisable medical practice patterns, thereby increasing the odds of treatment-induced complications.
Patients and their families cannot assume that medical providers are alike in their knowledge and experience. For example, the notion that patients can be best followed by practitioners in their home community is seriously flawed. Locality does not replace the prerequisite for a practitioner with expertise on brain injury. In fact, many of these less experienced practitioners are unaware of the comparative medical fragility associated with brain injury. Many poor medical decisions could have been avoided had the proper brain injury specialist been consulted.
Additional challenges can be found in the person’s inability to fully and competently participate in his or her medical care and decision-making. Cognitive, behavioral, communicative and physical disabilities following brain injury can make it difficult, if not impossible, for a person to recognize changes in his or her health, convey those changes, recognize improvements, or a lack thereof, in health following a medical treatment or intervention, accurately convey medical history or the history of present health problem(s), obtain appointments for procedures or laboratory studies, obtain prescribed medications or otherwise properly adhere to a prescribed treatment regimen. One might conclude that the attendance of an advocate or family member to medical appointments will mitigate such difficulties, and while helpful, such participation often fails to provide improved results.
Reevaluating our Current System
In my career, I have seen many downstream medical decisions result in serious and, sometimes, deadly consequences. These have always been avoidable and unnecessary, and borne out of a lack of knowledge.
A general physician cannot reasonably manage a patient with a complicated cancer, and brain injury is no different in this regard. We need to develop mechanisms that enable a patient with a brain injury all the same benefits as those allowed patients with complicated diseases such as cancer or cardiovascular disease. Simply put, there is no substitute for an individual case being followed closely by an experienced brain injury specialist.
Brain injury can change nearly everything, not only in the injured person’s life, but also within the lives of his or her family members.
Early after a brain injury, family systems become embroiled in the injury as they address arising issues. Sleep gives way to ICU vigils. Quiet moments give way to prayer. Casual discussions give way to serious conversation. These days are ruled by fear, with small glimmers of hope to serve as momentary relief.
Recovery, to a greater or lesser degree, eventually occurs. Time passes, hospital stays end, and the injured often return home.
Unfortunately, families are all too often solely responsible for redefining a new normal, as our society does not yet effectively provide sustained support. Understanding how to cope with the many changes after brain injury, and a willingness to implement coping mechanisms will make all the difference.
These eight tips are a great place to start:
Counseling can ease burdens and facilitate grieving, adjusting, and managing, all without giving up hope. However, not all families can afford such care, and for that reason, there are the other seven tips.
Realistic optimism, positivity, and hope offer an opportunity for a brighter and happier new normal. Humor can help keep spirits high. And in spiritually oriented families, solace and confidence come from actively practicing their faith.
Everyone handles grief and the subsequent changes within their lives differently. However, it is important to remember that each family member, no matter their role in the injured person’s life, is going through these changes together. Communication is a portal to common ground and unity.
Scheduling a regular time to discuss the injured person, and any related issues, can help family members to open up, creating a more approachable and manageable situation.
Imagine a wagon wheel with a hub and spokes. Families often operate by moving one member or another in and out of the center of the wheel, as his or her issues and needs call for priority. After a brain injury, it can become habitual to keep the injured person in the center of the wheel. It’s important for families to find a way to move others in and out of the circle again.
Taking care of oneself can seem inappropriate, especially for parents. However, if one uses oneself up in the care of others, there will come a time when the person has nothing left to offer others. Take time for yourself, and maintain some semblance of your hobbies and interests.
Because of the many demands of brain injury, it can be difficult to find the energy or money to socialize outside of the home. And it can feel wrong to seek pleasure while a family member with brain injury cannot do the same. Yet, socializing can help heal by providing a healthy sense of perspective.
Tell your friends what works, when you need to discuss the injury, and when you need to discuss anything but the injury. Friends and family may need your patience and forgiveness, as they may offer advice that is not useful or feels judgmental. No one knows how to act in these situations, and they are no exception.
7. When to Feel
There is time for grieving, sadness, and loss. So too, there must be time for hope, joy, and laughter. It is okay to take out the “pity pot” filled with your sorrow, despair, and loss. But then, with deliberation, put the “pity pot” back in the closet for another day. You will use it again and again, just always remember to put it away. In this way, you can avoid becoming mired in grief.
Some parents fear doing anything that might look or feel like they’ve accepted their child’s level of disability. It’s good to desire further growth and improvement post-injury, but there is a limit, and it is not healthy to be consumed by the drive to wring more recovery out of an injury. It is crucial to balance both acceptance of your new normal and hope for continued improvement.
One day I noticed the fine print on a cereal box, “Contents may settle during shipping.” The advisory served to avert any concern I might develop when opening the cereal to find it only three fourths full. I liken this advisory to balancing acceptance. So too will your “contents” settle as you move through your family’s changed world. One can and should actively explore changes wrought by brain injury in the family because realization of these changes will happen eventually, with or without your consent.
Those who find a way to bring balance back into their world are more apt to successfully take on the ripple effects of brain injury on their family dynamic. And, to be sure, the injured person will also flourish to the best of his or her ability in this normalizing and positive environment.
So, please make the decision to thrive. Be a light for you and your family. Find opportunities each day to laugh, dance, socialize, and communicate deeply. In this way, you can adjust to and manage in your new world.
Most people understand the important restorative value of sleep. However, the detrimental effects of sleep disorders are not as plainly understood and discussed.
Sleep disturbance is found in as many as 40% of individuals who have sustained a brain injury. Common sleep disorders include sleep apnea, difficulty falling asleep, difficulty staying asleep, difficulty awaking, and difficulty in achieving beneficial cycling between the various stages of sleep. This post will discuss a few key sleep disorders, the ramifications of sleep disorders, and proper and improper solutions.
Snoring is the most obvious indication of sleep apnea, however snoring is not conclusive of sleep apnea. In fact, the only way to determine the presence of sleep apnea is through polysomnography (a sleep study). While there are devices that offer detection via headbands and other mechanisms, our research has shown that these devices are quite inaccurate and miss the majority of individuals with sleep apnea.
Sleep apnea has been linked to brain damage in heretofore healthy individuals. For a person who has already sustained a brain injury then, this link between sleep apnea and brain injury further emphasizes the drastic need for diagnosis and treatment.
Negative Effect: Growth Hormone Deficiency
Disruption of sleep at the wrong time in the sleep cycle may disallow the body’s production of growth hormone. If the body does not produce this important hormone in the early morning hours, it will not be available throughout the day. Exercise can help to increase the body’s production of growth hormone, however, this increase will not replace that produced in the early morning hours. Growth hormone deficiency leads to tremendous weight gain, high lipid levels in the blood, fragile bones, depression, cognitive problems, and, most importantly, real problems with the brain’s metabolism of oxygen and glucose (its two primary fuels). Growth hormone is extremely important to the brain’s ability to repair and maintain myelin, the insulating sheath that surrounds axons and impacts their speed of transmission and their plasticity.
Negative Effect: Memory
During normal sleep, particularly during REM cycles, information using large amounts of the brain’s resources is consolidated into more efficient holdings, and new information fuses with existing information. However, in those with sleep apnea and other sleep disorders, REM cycling is disrupted. This can negatively affect the brain’s ability to repair itself, ability to protect itself, memory function and metabolic efficiency. So, normalizing sleep is crucial.
Inefficiency of Medication as a Solution
Those who have difficulty falling and/or staying asleep may rely on over-the-counter sleep aids with or without medications that relieve pain. The drug (Benadryl or diphenhydramine hydrochloride) used in these over-the-counter agents actually can cause difficulty with memory, and a hangover effect the following day.
All medications used for sleep disturb REM cycling. As the importance of REM cycling was explained above, this consideration lends to suggest sleep aiding medications should be used with caution and infrequence.
Proper Solutions to Sleep Disorders
Good sleep hygiene is the most useful approach to overcoming many sleep disorders. This includes avoidance of caffeine; regular daily exercise before 7 PM; dark, cool, and quiet sleeping quarters; use of calming activities such as reading before bed; regular bedtime and wake time; and avoidance of waking to urinate or undertake other activities in the night. Alcohol consumption can result in awakening in the night as glucose levels in the blood drop, so alcohol should not be used to induce sleep.
After a brain injury, developing, guarding, and maintaining a routine of 7 to 9 hours uninterrupted sleep every night is critical. A good sleep study, use of an autoregulating BiPAP device for sleep apnea, daily exercise for 45-60 minutes, and good sleep hygiene are a good start to enhancing the body’s own abilities to heal, repair, and protect itself.
In 1977, Ed Breen of the Home Insurance Company identified a problem within the healthcare provisions for workers injured on the job. He approached a group of academics with a win-win solution, if it could be accomplished.
A number of individuals acquired catastrophic brain injuries in the scope of their employment with Mr. Breen’s company. Despite months of treatment in hospitals, these people were often left with tremendous levels of disability. Such disability translated to a very poor quality of life for the injured persons and their families, and a very high cost of continued care over the injured persons’ lifetimes.
Mr. Breen’s solution:
Reduce their levels of disability to an extent greater than that achieved at the hospitals, which leads to:
So, advances were made over the last 40 years in treatment of people who have sustained brain injuries through work-related incidents. Worker’s compensation professionals specifically designed an entire continuum of treatment to manage the catastrophic claims of their parent companies in concert with health professionals. Treatment was extended to rehabilitation in post-acute care; results spoke for themselves with many more people returning to higher levels of productivity and overall health, thus reducing long-term health costs.
Worker’s compensation has improved brain-injured persons’ level of care from what it was in 1977. I ask now, is that enough?
In California, the guidelines that are used by carriers and utilization reviews organizations are simple. They are presented from the Medical Treatment Utilization Schedule (MTUS) below in their entirety:
“Patient rehabilitation after traumatic brain injury is divided into two periods: acute and subacute. In the beginning of rehabilitation therapist evaluates patient’s functional status, later he uses methods and means of treatment, and evaluates effectiveness of rehabilitation. Early ambulation is very important for patients with coma. Therapy consists of prevention of complications, improvement of muscle force, and range of motions, balance, movement coordination, endurance and cognitive functions. Early rehabilitation is necessary for traumatic brain injury patients and use of therapy methods can help to regain lost functions and to come back to the society. (Colorado, 2005) (Brown, 2005) (Franckeviciute, 2005) (Driver, 2004) (Shiel, 2001)”
The above definition does not reference the continuum of treatment that has been used consistently over the last four decades. The continuum is shown below:
It is said that if “one has treated one person with a brain injury, they have treated one person with a brain injury.” That is to say, no two people who sustain a brain injury are alike. Brain injury is one of the most, if not the most, complicated medical conditions to be encountered. And, brain injury is often accompanied by other system injury or involvement.
Not only is brain injury tremendously complex, but so must be treatment for brain injury. The above continuum provides for numerous treatment setting options, each with distinct dosing advantages for specific subgroups of patients who are experiencing unique constellations of deficits following brain injury. These deficits can include medical, physical, communicative, cognitive, psychological, and/or behavioral disorders requiring careful selection of the treatment setting most likely to properly dose treatment of the problems presented by any given individual.
So, why does the State of California operate under such simplistic guidelines? Is this the best we can do?
One solution may be to adopt other guidelines that have far better information to offer pertaining to brain injury. Two of these include the Colorado Medical Treatment Guidelines (2012) and the Official Disability Guidelines.
Brain injury can predispose the brain to neurodegenerative processes and may be implicated in a host of diseases such as chronic traumatic encephalopathy (CTE), Parkinson’s disease multiple scelerosis, amyotrophic lateral scelerosis, stroke, epilepsy, Alzheimer’s disease and others. The simplified explanations in this post allow us to consider whether we are monitoring and treating neuroinflammatory influences chronically and properly after brain injury.
So, we must consider whether an approach that addresses behaviorally accessible avenues such as diet, sleep, and exercise combined synergistically with endocrine, immune dietary and exercise interventions to quiet inflammatory processes in a previously injured brain has utility in accelerating recovery, furthering recovery, providing neuroprotection for residual, as of yet, uninjured cells, and/or preventing neurodegenerative processes to be accelerated over those of normal aging.
Value-based treatment and outcomes is a largely discussed topic in national healthcare today. Unfortunately though, there is not a unanimous definition of “value” within traumatic brain injury (TBI) rehabilitation.
The value-based treatment and outcomes model promotes the most effective and results driven practices to be implemented in the most cost-effective ways available. Value is the perceived benefit to a patient’s health, as determined by the difference created from the inverse relationship between better treatments and lower costs.
The greater the difference, the greater the value. By this logic, a person would determine the value of a new clothing item not only by the article’s look, fit, durability, etc., but also by accumulating those benefits and weighing them in comparison to the cost of the item.
I argue that the term “value” in value-based treatment and outcomes ought to refer to the value received by the patient, and less so, perhaps, by the payer.
In this example, the purchaser is also the person ascribing perceived value to the purchase, whereas the party paying for a healthcare service is rarely the party receiving the service. It is in this divide between the paying party and the receiving party where the perception of value often varies.
In healthcare, value to the paying party may be defined as a need to meet the contractual obligation of coverage in the most cost-effective manner possible. Reiterating value-based treatment and outcomes, the two components necessary are the most effective care and the most cost-effective means.
Simply meeting the contractual obligation of coverage, however, is not always sufficient to the provision of most effective care, and many times this approach unfortunately reduces the discussion of treatment to that of costs involved, thus limiting the duration of TBI residential programs and rehabilitation treatments.
The transition of health insurance from nonprofit to for-profit and the need to continually satisfy shareholders’ financial expectations can stand in tension to the need to provide the most effective care, especially if that care seems more costly. Furthermore, the tremendous complexity of acquired brain injury is unrivaled by any other medical diagnosis. This complexity is rarely understood by health plan professionals whose job is to review benefits and coverage and approve an individual’s treatment, resulting in cost-based decision making over efficacy-based decision-making.
On the other hand, the value of the same services to the person receiving them may place a greater level of importance on most effective care. For example, while being able to ambulate with a normal gait and endurance may be of great value to the patient, the payer may want to forego costs necessary for such an end result and instead settle for the patient’s ability to ambulate with less efficiency and for very simple purposes, i.e., short distances or with supervision.
I argue that the term “value” in value-based treatment and outcomes ought to refer to the value received by the patient, and less so, perhaps, by the payer. Do individuals with TBI ascribe the highest value to a “functional” outcome, or to an outcome that represents the maximization of their post-injury ability? Is “functional” the highest value outcome, and if, so, for whom?
That the payer may find relatively little motivation and, therefore, value in paying for the most effective service available is, unfortunately, disconnected from the values of the person needing or receiving the services. And, that the patient may not be aware of all that they should be about treatment choices, treatment efficacy, and prognosis, leaves patients remarkably vulnerable to treaters, payers and others.
This disconnect serves as a disquieting confound to the value-based treatment and outcomes model in healthcare. The value intended to result from a difference between most-effective care and the most cost-effective means is diminished to a value found only through the latter half of the equation, cost-effectiveness.
Given the strikingly different definitions of value between a payer and a patient, the issue can be ethically challenging and quite pointed. Ultimately, the obligation for all parties should be to the value-based treatment and outcomes model, and this model should not be jeopardized.
Effects of brain injury can permeate beyond reckonable and documented impairments. Social isolation is one such often unmeasured and unnoticed effect. Stark contrasts in lifestyle before and after brain injury, such as social isolation, impact the injured person, family members, and friends.
Additionally, social isolation shares a causal relationship with depression. Social isolation’s potential to cause such widespread and negative changes after brain injury necessitates serious consideration and investigation.
Brain injuries can rob individuals of physical, communicative, cognitive, emotional and behavioral skills. When these skills are impaired, individuals are challenged with the difficulty of reintegrating into their pre-injury lifestyle. No longer providing the same level of support for their family and friends, their role shifts and relationships are altered. Self-worth is largely derived from social interaction with others. A life redefined by injury is a monumental shift, and in that transition, social isolation often awaits.
Though a downward spiral toward social isolation is caused by disconnect from family and friends, they are not necessarily to blame. The injured person’s difficulties in returning to work may bring about financial struggle. They may depend heavily on friends and family for daily care. Behavioral changes can be enough to cause significant discomfort for loved ones.
Stress, responsibility, and worry come with the support of a brain injured person. Many of those involved in supporting roles will drift away or lessen their involvement substantially. Those who do stay may still feel disconnected from their injured loved one. As such, through no fault of any one party, social isolation sets in as a considerable problem. The social isolation associated with brain injury perpetuates the stark contrasts in lifestyle listed above, and consequentially negatively impacts the brain injured person and those in their sphere of support.
Additionally, social isolation’s causal relationship with depression is a dismal outlook for people with brain injury. The incidence of depression five to seven years after brain injury ranges between 40 to 60% according to research literature. Though social isolation is not definitively the cause of each case of depression, there is enough room to believe it’s a significant contributor.
Through the instances explained above, social isolation is a serious problem for both the individual with brain injury and their family members. Detection of social isolation is difficult in its complexities, and solutions are few and far between. There is a significant need for investigation and development of solutions to address social isolation.
Depression is best treated by a combination of counseling, medication, and exercise. Counseling can focus on individuals’ reactions to their circumstance, and efforts to change their circumstance. Counseling can provide coping mechanisms for the injured person and family. Medications, when appropriately applied, can be used to effect the neurotransmitter systems involved in depression as well as help with sleep and anxiety. Exercise can bring about improved feelings of well-being and help to regulate the body’s production of endorphins.
Above all, depression mandates the involvement of professionals who can undertake careful investigation of the cause of depression, and numerous treatment modalities for depression.