Article By: Melissa Malacaria, M.Ed. (Counselling), CCC, Rehab First Inc. & Christine Kennedy, M.Sc.OT, OT Reg. (Ont.), Rehab First Inc.
(Originally published in The Monarch – June 2011)
Following a traumatic brain injury, individuals have many new challenges to deal with; he or she must come to terms with losses in memory, difficulty concentrating, impaired judgment and insight, disturbed sleep, depression, fatigue and difficulty switching between tasks, among other things.
Now imagine becoming a new parent while dealing with these challenges. Add to the mix: a crying baby at all hours of the day, the responsibility of raising a child, changes in hormone levels, a new and disrupted routine and a tiny person who commands your attention all times. On top of that, often new parents battle with feelings of insecurity and worry about the new baby and their skills as a parent. For someone with a brain injury all of these feelings and emotions are amplified and these new challenges as a parent may sometimes feel impossible.
However, there are strategies that can be put into place for someone with an acquired brain injury to help understand and deal with the limits and challenges of becoming a new parent.
DEALING WITH THE ANXIETY
Even before becoming a parent, the anxiety and stress levels at the thought of a new baby may be difficult to handle. A person with an ABI might ruminate about how their limitations are going to impact their ability to parent, “If I can’t even make it though a normal day without fatigue and a headache, then how am I going to do this with a baby?”
The first step in dealing with this anxiety is to identify the thoughts and feelings associated with the anxious experience and recognize how those thoughts and feelings hinder daily functioning. Recognizing how these negative thoughts affect our overall functioning and learning ways of coping with them can help us to better deal with those feelings when they arise. An effective way of coping with anxious symptoms is to use diaphragmatic breathing and relaxation exercises to help calm the anxiety. Before the baby is born, taking time to concentrate on your breathing patterns can help to alleviate stress. After the baby is born, dedicating extended periods of time to this task can sometimes be unrealistic, but finding even short moments to implement specific relaxation and diaphragmatic breathing techniques can still be very beneficial.
Another way to help deal with the anxiety is to work with a counsellor to combat unrealistic and negative thoughts. Using Cognitive Behavioural Therapy, a counsellor can help to question assumptions, evaluations and beliefs that might be unhelpful and to test new ways of thinking. A counsellor can also help to explore and monitor various strategies for coping with anxiety that can be implemented.
Lastly, anxiety can often be mitigated by being self-aware and identifying your limitations and preparing for those limitations. Accessing your support system at this stage becomes vitally important.
CALLING IN SUPPORTS
One of the characteristics of an acquired brain injury is a lack of insight, particularly with respect to your own limitations. This makes asking for help at the appropriate time even more challenging. Working together with support systems (family, friends, spouse, caregiver, occupational therapists, counsellors, etc.) to identify what the challenges will be once the baby is born will help to put plans into place to recognize when support will be needed and who will be the most appropriate person to assist. Educating those providing primary support is critical. A counsellor can assist with promoting effective communication between the brain injured person and their support system.Often it is necessary to call on extra attendant care supports once the baby arrives to assist with overcoming challenges with multitasking, memory, judgment and fatigue. Personal support workers or rehabilitation therapists can assist with cueing and establishing a routine for the ABI parent and their new baby. Implementing relaxation and self care techniques should also be incorporated into the schedule and routine.
Following a brain injury, individuals find that every task requires more concentration and effort and consequently fatigue sets in more easily. Pacing is a way of gradually increasing the amount you do in small planned steps, with the aim of building strength over time. Without pacing, a busy and stimulating day can lead to extreme fatigue and the ability to parent for the next several days may be significantly decreased.
Learning to take small steps and frequent breaks can help to conserve energy over longer periods of time. An occupational therapist can help assist with setting up a pacing plan.
Finding time to engage in leisure pursuits both with and without baby can be very helpful in reducing burnout. Look for opportunities to engage in hobbies, light exercise, and activities in the community, and find ways to work these things into your routine.
An occupational therapist can also help identify devices that will help to make life with a baby more manageable. Devices to assist with planning and organization like calendars, smart phones, and white boards can help to keep pediatrician and other appointments organized, can help establish routines for the new mom and baby and can assist with memory deficits.
Safety devices for the baby are crucial for a parent with an ABI who may have attention or memory deficits. Call on supports to ensure that the home is fully baby-proofed, with baby gates, electrical outlet covers, bumpers, carpet runners etc. and set-up a system for the kitchen. Using timers or a slow-cooker can help assist in preparing meals in a safe way when the parent is busy and distracted with the new baby.
Along the same vein, an occupational therapist can help to ensure that a plan has been put into place for emergency situations. The plan will include ways to help recognize the signs of an emergency and what to do or who to call if a situation does arise. Again, educating the family, friends and other support people about these plans will help to ensure that the necessary steps are followed in the event of an emergency.
About the authors:
Melissa Malacaria provides case management, vocational and educational rehabilitation services, and personal counselling to both adults and pediatric clients. While at Rehab First Inc. Melissa has worked with many complex injury cases, including children and adults with traumatic brain injury and has also provided expert testimony.Melissa obtained her education at the University of Western Ontario, where she earned an Honours degree in Psychology and a Master of Education in Counselling Psychology. Melissa is a member in good standing with the Canadian Counselling and Psychotherapy Association. Her practice focus is individual and group therapeutic counselling with particular emphasis on vocational exploration and choice. While completing her studies, Melissa participated in a number of volunteer roles, as well as a placement with the Thames Valley District School Board where she gained experience working in a counselling role with children and adolescents.
Christine Kennedy is an Occupational Therapist and Manager of Rehabilitation Services with Rehab First. Her scope of practice encompasses assessments and treatments related to physical, affective and cognitive function, adaptive behavior, the recommendation of assistive devices, and rehabilitation and maintenance in the areas of self-care, productivity, and leisure. She is actively involved in discharge planning and works with hospital staff and families to be sure that patients make safe transitions from hosptial to home. Christine earned her Honors B.A. in Physical Education at Queen’s University and her Master of Science in Occupational Therapy from Buffalo’s D’Youville College. Her practical experience was in the areas of mental health, acute care, pediatrics and rehabilitation in a variety of clinical settings. She is certified in the administration of the Progressive Goal Attainment Program (PGAP) and is a certified ADP authorizor.
The Conundrum of Resilience & Brain Plasticity in Children/Teens with Traumatic Brain Injury: Recommendations for Support
Article By: Dr. Erin Warriner, CPsych – Clinical Psychologist & Neuropsychologist
Previously, it was proposed that children were more resilient and their brains had the potential for greater neural plasticity and change than adults and thus it was assumed that they would recover more quickly and have limited lasting impact from a brain injury sustained in infancy or childhood. Often children appear “better” and bounce back into their daily routines once the physical symptoms of brain injury, such as headache, dizziness, and lethargy have resolved. Consequently, children often do not get referred for follow-up with specialists nor are any rehabilitation or education services put in place.
While naturally some children do recover well, it is now better recognized that children are at least as vulnerable, if not more so, than adults in terms of experiencing long-term pervasive effects from brain injury. Research supports that the brain has the potential for plasticity and new learning, but this process may be interrupted when the brain is injured. The child with a brain injury may require more structured explicit opportunities to learn and compensate in areas that were affected by the brain damage and in some areas may not improve or even seem to get worse over time.
Problems in cognitive, social, emotional and behavioural domains may not be obvious initially and in fact may become more pronounced or emerge later in life. Children and teens often grow into their deficits as the demands, responsibilities and expectations at home and school change over time. Greater independence, organization/planning, self-regulation, logical reasoning, social perception/judgment, multi-tasking, and sound decision-making become emphasized as the child gets older; these are all key higher-level cognitive and behavioural processes frequently affected by brain injury. These struggles often lead to parent conflict, social isolation and academic failures, which can exacerbate frustration, anger, depression, anxiety, substance abuse, and conduct behaviours. The deficits from the brain injury and the associated reactions at this stage are often misattributed by parents and teachers as behavioural or emotional problems.
The misconception of resiliency and full recovery unfortunately contributes to false hopes for parents, leads to delays in obtaining necessary supports, and can perpetuate complications in later life. So, what can we do to support children and teens with brain injury?
Recognize the brain injury early. A neuropsychological consultation can help diagnose and identify the cognitive-behavioural changes post-injury. The assessment will be able to highlight the strengths of the child and the areas of need. It will also offer education and support to the children and their families around current and potential future challenges. The neuropsychological assessment can also provide the foundation to guide work by other health care professionals/therapists and highlight necessary supports that would be beneficial at home and at school.
Communicate regularly to offer a collaborative interdisciplinary approach. Involvement of a variety of health care professionals/therapists is needed to support the complex, ever-changing needs of children/teens with brain injury. This may include but is not limited to some of the following professions: occupational therapists, physiotherapists, speech and language pathologists, neuropsychologists, rehabilitation therapists, clinical psychologists, social workers or counsellors, physicians and nurses, behavioural therapists, etc. These various professionals can collaborate to offer joint and unique benefits for the child/teen and families in terms of their clinical expertise and interventions.
Involve specialists in pediatrics. Children do not just have miniature adult brains. It is pivotal that therapists working with children/teens with brain injury have an understanding of developmental processes and direct experience with this clinical population. Interventions need to be flexible and tailored to the individual and framed in the appropriate developmental context, which likely will involve different strategies/interventions than those used with adults.
Offer the family ongoing education/support. While maintaining hope and a positive outlook are important for coping and adjustment following an injury, I frequently share with families the concept of “realistic optimism.” This involves balancing between remaining open and invested in the potential for improvement but within the context of knowing more about what to expect and how to set and obtain supports to achieve realistic goals. The various health professionals can work together with the child/teen and their families to provide education about the brain injury, potential challenges, and to set goals together depending on their needs, readiness and understanding at any given time.
Collaborate with the school system. Given that children spend a great deal of their time at school, open and regular communication between community therapists, school therapists and teaching staff will be needed to offer education about brain injury, develop coordinated interventions and reinforce consistency in implementation of any effective strategies across environments. Children will need appropriate educational services or individualized education plans which are set-up early and modified over time to remove or add supports as progress is made or new challenges arise over time.
Monitor progress and redevelop support plans. Children/teens with brain injuries need to be routinely followed over time (even when they are seemingly doing well) to ensure that both short-term and longer-term needs are met. For many children with brain injuries, assessments will likely need to be repeated at key developmental stages/transitions. Any plans and supports in place will need to be reviewed frequently and modified to coincide with changes from recovery and to promptly address developmental issues. Well-coordinated interdisciplinary specialized pediatric services offering tailored, adaptable supports can help children/teens with brain injuries achieve their fullest potential and a better quality of life.
Dr. Erin Warriner is a Clinical Psychologist and Neuropsychologist who specializes in the assessment and treatment of children, adolescents and young adults. She currently works at McMaster Children’s Hospital with children and teens who have neurological conditions and acquired brain injuires and also with adults and seniors in the Integrated Stroke Rehabilitation Program at the Hamilton General Hospital. Through Rehab First’s MEDNet program, Dr. Warriner performs assessments for all ages. Children and teens can be seen for neuropsychological, clinical psychological, psychoeducational and developmental assessments. To arrange assessments with Dr. Warriner please contact Leigh Ann Van Doorselaer at 519-646-2949 or 1-888-REHAB90 (734-2290).
Late last month, the Catastrophic Impairment Expert Panel released a 154-page report outlining its recommendations for changes to the definition of “catastrophic impairment.” In the auto-insurance industry, the term refers to a high-level of disability a person suffers as a result of a motor-vehicle collision which entitles them to a significantly larger benefit entitlement for medical and rehabilitation and attendant care costs. For some time there has been debate in the legal, insurance and healthcare communities about the validity of the definition of “catastrophic impairment” and the way that it was determined under the Statutory Accident Benefits Schedule (SABS). The Catastrophic Impairment Expert Panel was tasked with revising the definition of catastrophic impairment with the aim of ensuring “the most seriously injured accident victims are treated appropriately.”
The panel has made suggestions for a major overhaul of the definition including the introduction of an interim catastrophic impairment designation and changes to the scales and assessments used. They have also suggested changes to the definition with respect to the whole person impairment, traumatic brain injury in children, and psychiatric disorders.
Rehab First had significant concerns that these changes will add a new level of complexity which will be difficult to navigate, and more notably, that the changes seem to constrict the definition further so that fewer complex and severely injured people will have access to a high level of funding and care that they require.
Below is the response that Rehab First’s President, Jamie Campbell, submitted to FSCO expressing our concerns.
May 13, 2011
Dear Ms. Raz,
I would like to take the opportunity to express concern with the Expert Panel’s Recommendations for Changes to the Definition of Catastrophic Impairment. The Expert Panel was tasked with revising the definition of catastrophic impairment with the aim of ensuring “the most seriously injured accident victims are treated appropriately.” Unfortunately, this aim was not fulfilled with the recommendations put forward by the Expert Panel.
The proposed definition does not improve the accuracy of identifying which accident victims need access to medical, rehabilitation, attendant care, case management, housekeeping and home maintenance goods and services, or the length of time that injured accident victims will need these services. The definition put forward by the Expert Panel will only help to narrow the definition so that fewer people have access to the level of care that they might need, and will shorten the duration of time that people can access funding for care.
The proposed definition will further limit access to care that was already inadequate for many innocent accident victims even before the harsh reductions to benefit levels were made to the Statutory Accident Benefit Schedule on September 1, 2010.
In my opinion, the catastrophic definition needs to be broadened rather than narrowed, so that more people with disabilities as a result of motor vehicle injuries are provided access to the goods and services that they require. In the current system, there are many people who have been injured in car accidents who do not meet the catastrophic definition, but who have significant functional impairment in their lives as a result of a motor vehicle accident. Many of these people with serious and catastrophic injuries are unable to access treatment and care as a result of the limited benefit caps that already exist in the current automobile insurance system.
I have been providing case management, educational and vocational rehabilitation counselling and life care planning services to those who have been injured in motor vehicle collisions since 1981. I currently work as the Director of Rehabilitation Services for Rehab First Inc., which I own and operate with my partner,Joanne Gram. Rehab First is a multidisciplinary community-based rehabilitation agency that employs over 75 professional staff who provide health and rehabilitation services to people throughout Southern Ontario. Our professional staff is comprised of nurses, occupational therapists, speech language pathologists, rehabilitation therapists, social workers, counselors, case managers and a physician. We have experience working with people that have sustained brain injury, spinal cord injury, amputation, significant physical or psychological trauma, and chronic pain as a result of motor vehicle accidents.
I write to you today as an experienced person, who has provided rehabilitation assessment and treatment services for almost 30 years, to thousands of people who have been injured in motor vehicle accidents. I have worked with people who were injured and insured under various automobile insurance legislations, including the Standard Automobile Policy; the Ontario Motorist Protection Plan (1990); Bill 164 (1994), Bill 59 (1996) and Bill 198/5 (2003). I have worked in rehabilitation field since before the Catastrophic Designation existed, and have worked under the constraint of the Catastrophic Designation now for many years. We accept referrals from insurance adjusters, lawyers, physicians, psychologists, discharge planners, and health care professionals. People who have been injured can self refer, and family members of people that have been injured also make referrals.
I trust that you will find my experience and perspective helpful in providing some insight on the newly proposed recommendations.
Whole Person Impairment
I have several concerns with the panel’s proposed definition, and the first is the separation of psychiatric and physical impairments with respect to the Whole Person Impairment (WPI) rating.
Currently under the SABS, the severity of physical impairments is determined according to the American Medical Association’s Guides to the Evaluation of Permanent Impairment, 4th Edition. A person must sustain a rating of at least 55% WPI in order to be considered catastrophically impaired. Under the current system, both physical and psychological impairments can be combined to result in a 55% rating. The panel suggests in its report that the psychiatric and physical ratings be separated, stating that “the impairment rating systems for physical and mental/behavioural impairment are not compatible and cannot be combined.”
The scientific evidence to support this claim is not outlined in the report and, “the Panel did not have the resources to conduct a comprehensive literature review to determine whether a valid and reliable method of combining physical and psychological impairments exists.” If the panel is going to make such an important and far reaching recommendation, then they should at least take the time necessary to study the matter thoroughly.
Unfortunately, the panel also ignored 16 years of case law and jurisprudence that says that physical and mental/behavioural impairments are compatible and can be combined. Over the last decade, there have been several cases, beginning with Desbiens v. Mordini and more recently with the Fournie decision, where arbitrators and judges have determined that it was fair and proper to assign a percentage rating to an accident victim’s psychological impairments and combine them with his/her physical impairments for the purpose of determining whether the combined impairments meet the catastrophic definition of 55% WPI. Evidence in these cases was accepted from various well qualified medical experts and is being totally disregarded in this recommendation.
It is unacceptable to make an arbitrary decision to separate the two based on little to no scientific evidence, and to ignore what has been determined be fair and reasonable by the courts over the last 16 years. I have seen many cases in my personal experience as a case manager where physical impairments inherently affect psychological functioning and vice versa, and to separate the two is unreasonable and unjust.
Interim Catastrophic Impairment
One of the recommendations is the introduction of an interim catastrophic impairment status. Under the current system, the two-year or more waiting period before an injured person can be designated under the catastrophic definition creates a period of stagnation and frustration for the injured person,their family and their treatment providers. The panel suggests that providing interim catastrophic impairment status would help “to balance access to higher level of funding necessary for early rehabilitation with the need to minimize the risk of patients being permanently designated as catastrophically impaired when there is a reasonable chance they will cease to be catastrophically impaired.”
While I am in support of providing injured accident victims access to the goods and services they require more quickly , I have concern with the interim status with respect to the notion that, “there is a reasonable chance they will cease to be catastrophically impaired.” This poses problems for several reasons. For example, what testing or method will determine whether or not a person “ceases to be catastrophically impaired?” At the point that someone is determined to cease to be catastrophically impaired, will the benefits utilized during the interim period reduce their medical and rehabilitation benefit coverage cap as a “severely injured” person? If a person in the interim category receives a heightened level of care because of the severity of their injuries, the likelihood that the remainder of the $50,000 medical and rehabilitation benefit will sustain treatment and care through the rest of their rehabilitation is highly unlikely. How does an innocent accident victim who is severely injured and having difficulty functioning at home and in their community, find the funds and resources to challenge or appeal a far reaching reversal of catastrophic determination made by a well intended, but occasionally mistaken, automobile insurance adjuster who has access to the vast resources of an insurance company?
Scales & Testing
My last concern with the report is the complete overhaul of the methods for determining the level of severity of injury for effectively every injury classified under the catastrophic definition. The panel has included the use of the American Spinal Injury Association (ASIA) system of classification, the Kings Outcome Scale for Childhood Head Injury (KOSCHI) and the Global Assessment of Functioning (GAF). The panel has also removed the Glasgow Coma Scale (GCS) because “of the questionable ability of the GCS to predict the long term outcomes with respect to catastrophic impairment,” and instead included the Extended Glasgow Outcome Scale (GOS-E). If the goal of including all of these scales and assessments was to increase accuracy and improve the effectiveness of determining long-term needs, then the panel missed the mark.
All of the scales mentioned in the above paragraph are subjective measures that have error and room for interpretation in their use. Even if these assessments are carried out by trained health care professionals and physicians, the assessments are not completely reliable or valid (Chafetz, Vogel, Betz, Gaughan & Mulcahey, 2008; Calvert, Miller, Currant et al., 2008). Use of additional scales to determine catastrophic determination will increase dispute, prolong the wait for access to treatment and promote the need for mediation, arbitration and litigation.
The current SABS classify any injured motor vehicle accident victim who has suffered quadriplegia or paraplegia, as being catastrophically impaired. This definition is straightforward and relatively easy to apply. It leaves little room for debate. Under the proposed definition, the panel suggests using the ASIA system of classification for the determination of level of disability with respect to spinal cord injuries. The ASIA system classifies patients in five severity categories, Grade E considered normal and Grade A considered a complete spinal cord injury. The panel has recommended that anything above a Grade C designation be considered catastrophic. The main issue with this classification is that studies have shown that without adequate training, the test results vary widely depending on the assessor. Chafetz et al. (2008) found that, “unfortunately, even after training, accurate classification of motor level and AIS designation remained unacceptably low.”
Similarly, studies show that the KOSCHI is not an adequate predictor of long-term outcomes. Calvery et al. (2008) concluded that while the KOSCHI is easy to use and may have a useful role in the clinical setting as a summary indicator for estimating physical and cognitive needs at hospital discharge, “it does not appear to be a useful predictor of behavioural or emotional difficulties.” They note that, “the KOSCHI scored at discharge does not appear to be a sensitive predictor of clinical outcome or rehabilitation needs at least 6 months post-TBI.”
While the GOS-E appears to be a better predictor of outcomes for brain injury in adults than the GCS, it is still a subjective test that has varying results depending on the assessor, and the GAF has been shown to demonstrate clinical symptoms, but not to be an adequate assessor of functioning. Roy-Byrne, Dagadakis Unutzer and Ries (1996) conclude that “reliance on the GAF as the only tool to assess patients’ functioning may be problematic.”
Disputes over assessment ratings achieved from these scales will lead to delay in access to treatment for people that have been injured and will result in further need for mediation, arbitration and litigation to sort out these disputes. It would be much better to use the funds required to challenge disputes, on providing treatment to people with that have been injured.
The scales being proposed will effectively narrow the definition and further limit the number of severely injured patients who will qualify for the higher benefit limit. This might be well fine and good, if the injured person does not need treatment. However, many people now who have been severely injured, but do not qualify for the catastrophic determination, will not have their rehabilitation needs met with the $50,000 cap. Only 2 to 3 per cent of the people that have been injured in automobile accidents today qualify for the catastrophic benefit levels now. To further reduce the numbers of people injured who will qualify for catastrophic levels of treatment is a ridiculous recommendation.
The expert panel should have approached their task with an attempt to ensure that people who are injured in automobile accidents are provided access to the goods and services that they require to recover from their injuries and to restore their lives at home, in the community and in their occupation. If the panel wants to identify a measure to determine what a person who has been injured will need over the course of their lifetime, on a case-by-case basis, then I would support the panel. However, that has not been in the approach of the panel. The panel appears to have undertaken their work with their major intent being to reduce the numbers of people that will qualify for Catastrophic Determination and consequently I cannot support the recommendations that the expert panel has put forward.
The entire notion of Catastrophic Definition does little more than promote an adversarial and litigation-driven environment. The best course of action in overhauling this definition would have been to scrap it altogether. The better system is one where there are sufficient caps or limits on the amount of money available to meet the reasonable and necessary needs of the person with a disability. The better system is one where people that have been injured in motor vehicle accidents, medical and rehabilitation professionals, adjusters and lawyers, work together to determine need for and provide access to the goods and services that are reasonable and necessary to help the person with the injury recover and get on with their life post injury. The panel needs to recognize that many people sustain serious injury as a result of motor vehicle accidents, and that many these people need access to more help rather than less.
I sincerely hope that you will reconsider this definition in light of my concerns.
Please do not hesitate to contact me if you have any questions or if I can be of any further help.
James Campbell, MEd (Counselling Psychology), MBA, RRP, CCRC, CCC.
Director, Rehabilitation Services
Rehab First Inc.
Calvert, Sophie et al. “The King’s Outcome Scale for Childhood Head Injury and injury severity and
outcome measures in children with traumatic brain injury.” Developmental Medicine & Child Neurology 50 (2008): 426 – 431
Chafetz,Ross et al. “International Standards for Neurological Classification of Spinal Cord Injury: Training
Effect on Accurate Classification.” The Journal of Spinal Cord Medicine 31.5 (2008)
Boy-Byrne, P et al. “Evidence for limited validity of the revised global assessment of functioning scale.”
The American Psychiatric Association (1996)
At Rehab First, one of our core values is to promote community and collaboration. In the spirit of that value, we have hosted a series of educational breakfast seminars that bring together our community partners to share insights, information and to promote discussion. These have been a resounding success.
Along the same vein, we have launched our Practice Insights Blog, where we will share up-to-date information on all aspects of rehabilitation from serious injury. We strive to continue to share the knowledge that we have, and trust that our community partners will stop by often to share their insights and join the discussion.
You can subscribe to this blog on the right-hand menu to receive email notifications when new articles have been posted. Please let us know if you have an idea for an article and feel free to contribute to the discussion by commenting below.
Post By: Jamie Campbell, Director of Rehabilitation Services, Rehab First Inc.
Brain injury continues to be one of the leading causes of death and disability in North America (Greenwald, Burnett &iller, 2003). It can happen to anyone, young or old, and during a variety of activities. It can be accompanied by other injuries such as facial/cranial and spinal cord injury. Brain injury can have life altering changes on the person injured, and is now recognized to cause significant distress and change for the family and friends of the person injured. Brain injury’s challenges can be complex and it should come as no surprise that approaches to assessment, treatment and rehabilitation vary greatly, depending on a number of clinical, demographic, environmental and social factors. By extension, professionals who are engaged as Case Managers to help people with brain injury to develop, design and implement care and treatment plans, deal with financial matters and to access benefits, require a unique combination of skills, experience, professional credentials and personal qualities.
In Ontario, persons who are deemed catastrophically injured by auto vehicle accident are entitled to funding for the services of a Case Manager. On occasion, an insurer will authorize such services for non-catastrophicaly injured claimants on a limited basis. It is by no means uncommon to see the need for a Case Manager extend for a lifetime, depending on the severity of the injury, and the ongoing level of need for treatment and care.
It is instructive to review the brain injury statistics. In Ontario brain injury occurs at a rate of approximately 18,000 per year (Ontario Brain Injury Association, 2004). In Canada, it has been reported that approximately 50,000 people per year are hospitalized with brain injury (Newfoundland Brain Injury Association, 2002). In the United States, the annual incidence of brain injury is estimated at a rate of 250-300 per 100,000 population or 1.5 million per year (Campbell, 2000). At this rate, the city of London, Ontario alone may have more than 750 people each year that sustain brain injury.
Approximately half of brain injuries are reported to be caused by motor vehicle accidents, and 80% are reported alcohol related (Newfoundland Brain Injury Association, 2002). Twice as many males as females experience brain injury. More than 50% of people that experience brain injury are men between 15 and 30 years of age. More than 50% of the people that experience brain injury are under the age of 20 years.
However, it is not just young males with risky behaviours that experience brain injury. Each year over 5,000 children in Canada experience brain injury from bicycle accidents. Brain injury can happen to an elderly person while falling down the stairs. Brain injury can happen to people of both genders, who are young or old, in a variety of settings. Brain injury in Canada is a significant issue that affects the injured person, their families, their friends and many others who provide care, treatment and emotional support.
Although brain injury is typically classified by level of severity, injury to the brain can affect control and monitoring of physical, cognitive, behavioural, and emotional functioning (Newfoundland Brain Injury Association, 2002). The brain controls heart rate, breathing, blood pressure and swallowing, and injury to the brain can be life threatening.
One of the many functions of the brain is to help assess what is going on outside of the body, so that the person can act and interact in their environment. The brain helps to perceive what is happening, to process this information, to compare this information to similar experiences encountered, to decide which action to initiate, to carry out the intended action, to monitor and assess the action, and to store the results into memory for future use. Injury to the brain can affect these types of functions (DePompei, Blosser, Savage & Lash, 1998) and how people behave, including how they behave and interact with family, friends and their caregivers. We are also learning that traumatic brain injury can cause severe and profound endocrine complications resulting from disruption of pituitary gland hormonal output, and thus has significant impact on TBI rehabilitation and its outcomes (Klein, 2009).
Practitioners in the hospital and community rehabilitation environment are familiar with the course of events after a motor vehicle accident brain injury. People with brain injury and their families typically experience the process for the first time. After the accident the person who has been injured is usually transported by ambulance to an acute care hospital. They may undergo surgery but are soon transferred to a rehabilitation hospital for more in patient care and therapy. After multi-disciplinary in patient treatment, people with brain injury are typically discharged home.
The transition from acute to alternative levels of care and rehabilitation is one that, when managed well, can have dramatic and lasting beneficial impact, not only for the injured person, but for their families as well. Indeed, experienced Case Managers know that the interdisciplinary approach to rehabilitation medicine that one sometimes sees applied to great effect in the hospital setting (Neumann, Gutenbruner, Fialka-Moser, Christodoulou, Varela, Giustini, Delarque), should also carry through to address post discharge case management issues.
Once home, community rehabilitation providers, preferably guided by a professional Case Manager, start to treat and interact with both the injured person and their family. Family members may or may not be ready at this stage, but are often required to provide care to the injured person. For many family members this type of care can be very challenging, and completely overwhelming. When brain injury happens to a loved one, family members can also find themselves struggling to cope with the impact the injury has on their own lives. For example, brain injury to a pre-accident academically gifted child who now has difficulty doing basic arithmetic, can have significant impact on the emotional or psychological well being of a parent.
Brain injury to the sole breadwinner of a family, can cause family members stress and worry over how the family will financially support itself (Williams, 1991). In a single income family, a pre-injury stay at home mother may be required to re-enter the work force and become the breadwinner for the family. Pre injury plans may need to be modified and family members may need to learn new ways to survive. Family members often need both the capacity to provide care to the person injured, and the ability to adjust their own lives.
The family member or members without injury, may not have the skills needed to return to the work force. They can now be faced with the task of preparing for work while trying to deal with their own emotional state, providing care to the injured person, all in the midst of family dysfunction. The situation is often not easy for families to deal with.
Researchers have documented that there is long term psychological distress for families after brain injury (Lezak, 1986; Gan & Schuller, 2002; Muray, Maslany, & Jeffery, 2006; Gan, Campbell, Gemeinhardt & McFadden, 2006). Families can experience denial, guilt and anger after a family member’s brain injury. The family may question why the accident or injury happened to their family? The feelings and emotional turmoil that families experience can go on for years after the occurrence of the injury. It is clear that the injury affects not only the person that has experienced injury, but often affects many, if not all, members within the family. Researchers have reported that individuals with brain injury, their mothers, spouses, siblings and the family unit, all have more family distress after brain injury as compared to norms (Gan, Campbell, Gemeinhardt, & McFadden, 2006).
Following brain injury, there may be persistent behavioural changes to the family member with injury. The person may not respond to treatment as fast as or as well as hoped and families can question their own adequacy as caregivers. Family member can blame themselves for lack of progress or outcomes. Care for the person with brain injury is often provided by parents, spouses or other family members, who may not be well prepared to provide care.
There may be anger directed at the family member with brain injury. There may be anger at other family members, a spouse, a child or a sibling, who may not be coping well with losses and changes in the family system. Family members may not function well individually, or the family as a whole may not function well. Brain injury can affect the entire family system.
Denial is often present after injury. As an emotion, denial can be helpful and harmful to families. Some families that deny potential for negative outcomes may put forth extra effort to access resources for the injured family member. The extra effort may help the family member reach maximal recovery. However, for families that deny permanent impairments or significant post injury changes, denial can cause families to have unrealistic expectations for the future and may not help in the adjustment process. The emotional distress can promote prolonged family dysfunction.
Role changes often occur within the family system. Pre injury, parents typically expect children will become more independent as they mature through teenage years. However, after brain injury parents may be required to provide much longer term care to their children than they had planned before the injury. Some parents may need to alter their retirement plans, in order to provide care and support to their children. Expectations and roles for siblings may change after injury.
Care giving needs can restrict families from pursuing their own activities. Family members may need to alter their pre-injury lifestyle. Supports that existed pre-injury may disappear. Families may become socially isolated after a family member experiences brain injury.
After having provided case management and counselling in the Southwestern Ontario rehabilitation community for several years, I can offer that in recent years, access to information and availability of services to help families after brain injury has improved. However, for some families, for example those that fall through the cracks in the system or those in rural communities, there can still experience lack of access to information and support services. Some families continue in distress with little help.
After brain injury, some families learn to cope well. They make adjustments and they learn to function. Other families are not as resilient or lucky. Some families do not remain intact and some struggle with ongoing family discord (Williams, 1991). One partner may decide to leave. Some parents may not be able to cope with the intensive care giving needs. Relationships between partners and children can be forever changed. Relationships between parents and non injured children, and relationships between siblings can change. Families are often faced with altered relationships and ongoing stress.
Counselling for families and individual family members can be helpful after brain injury (Kosciulek, 1995). I have observed in my own case management and counselling practice, that counselling has helped many families after brain injury. Published clinical guidelines (Muir, Rosenthal, & Diehl, 1990) suggest that families may require counselling help to work through anxiety and guilt, and to recognize their self worth and competence. Families may need to learn to use their individual strengths and to draw on each other for support. When needed after brain injury, counselling has the potential to help some families cope and rebuild their lives.
However, some families may not been ready to deal with the potential emotional pain that can come with counselling. They may prefer to try to continue to meet their own needs and to function independently, in spite of the distress that they may be experiencing.
The issue of whether to involve the family member with brain injury in family counselling needs to be addressed (Kosciulek, 1995) by the family and counsellor. If the family member with injury is able to participate in counselling, can explore, gain insight and understanding from the counselling, then involving the family member can be helpful. Some family members may need individual counselling, to express and explore issues too difficult or uncomfortable to divulge in family groups. Group processes can be helpful, but individual counselling to family members and the person with injury, may also be required.
Families may require help to develop appropriate support networks in the community. Publicly funded monthly support groups can sometimes be accesses by survivors, such as has been the case in a number of locations in Southwestern Ontario. This community support can be tremendously helpful to families with brain injury. Many health providers in the many community rehabilitation agencies, psychologists, psychotherapists, counselors and social workers, are often prepared to help families deal with changes after brain injury.
Case Managers, and the Counselors on their teams can help families develop peer and natural supports. Without taking anything away from the professionals providing rehabilitation care, some families can benefit more from families that have dealt with similar experiences and challenges who are willing to share their knowledge. The families that have struggled, and those that have survived and grown, may have the potential to help families in need.
After brain injury, once survivors and families have had a chance to grieve and adjust to their loss, families learn to create and tell new stories about themselves. In spite of their ongoing distress, they develop new scripts and schemas, learn new ways to cope and function. Families learn to care and interact with the person injured, with other family members, and within their communities. They continue to live and love. Families create new histories as they provide care and go about their lives. The experiences they encounter create new understanding. For people with brain injury that have survived, and for their families, life is dynamic, not static and will continue to change. There is much that an experienced Case Manager can do to help a person with brain injury, their families and their caregivers, build futures after brain injury.
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About the author:
Jamie Campbell is Director, Rehabilitation Services, at Rehab First Inc. He has been providing case management, counselling, vocational rehabilitation and future care cost services to the legal and insurance sectors since 1981. He has significant experience helping people and families that have experienced acquired brain injury, spinal cord injury and psychological distress.
For 16 years, Mr. Campbell was the President of Associative Rehabilitation Inc., a disability management firm that provided various rehabilitation and medical services across Canada and the United States. He was employed as Vice President, Insurance and Institutions, at Aetna Health Management, a subsidiary of the insurance company Aetna Canada. He has graduated with the M.Ed. (Counselling Psychology), M. Ed. (Educational Psychology/Special Education) and M.B.A. degrees from the University of Western Ontario and has completed training seminars and graduate level courses in case management, rehabilitation, research, assessment and counselling.
Mr. Campbell is a Canadian Certified Rehabilitation Counsellor (CCRC) through the Commission on Rehabilitation Counsellor Certification (CRCC), a Registered Rehabilitation Professional (RRP) designated by the Canadian Association of Rehabilitation Professionals (CARP), a Canadian Certified Counsellor (CCC) through the Canadian Counselling Association, and holds the Canadian Certified Life Care Planner (CCLCP) designation through the Commission on Health Care Certification (CHCC).