Traumatic Brain Injury
(TBI)
Jason Silva
Alex Ostler
Stefanie Wright
Lora Hughes
Definitions of Traumatic Brain Injury
“A TBI is caused by a bump, blow or jolt to the head or a penetrating
head injury that disrupts the normal function of the brain. Not all blows
or jolts to the head result in a TBI. The severity of a TBI may range from
“mild,” i.e., a brief change in mental status or consciousness to “severe,”
i.e., an extended period of unconsciousness or amnesia after the injury.
The majority of TBIs that occur each year are concussions or other
forms of mild TBI.”#
“Traumatic brain injury (TBI), a form of acquired brain injury, occurs
when a sudden trauma causes damage to the brain. TBI can result when
the head suddenly and violently hits an object, or when an object pierces
the skull and enters brain tissue. Symptoms of a TBI can be mild,
moderate, or severe, depending on the extent of the damage to the brain.
A person with a mild TBI may remain conscious or may experience a
loss of consciousness for a few seconds or minutes. Other symptoms of
mild TBI include headache, confusion, lightheadedness, dizziness,
blurred vision or tired eyes, ringing in the ears, bad taste in the mouth,
fatigue or lethargy, a change in sleep patterns, behavioral or mood
changes, and trouble with memory, concentration, attention, or thinking.
A person with a moderate or severe TBI may show these same
symptoms, but may also have a headache that gets worse or does not go
away, repeated vomiting or nausea, convulsions or seizures, an inability
to awaken from sleep, dilation of one or both pupils of the eyes, slurred
speech, weakness or numbness in the extremities, loss of coordination,
and increased confusion, restlessness, or agitation.”#
“Traumatic brain injury occurs when an external mechanical force
causes brain dysfunction.
Traumatic brain injury usually results from a violent blow or jolt to the
head or body. An object penetrating the skull, such as a bullet or
shattered piece of skull, also can cause traumatic brain injury.
Mild traumatic brain injury may cause temporary dysfunction of brain
cells. More serious traumatic brain injury can result in bruising, torn
tissues, bleeding and other physical damage to the brain that can result in
long-term complications or death.”#
“Traumatic brain injury (TBI) occurs when a sudden trauma, often a
blow or jolt to the head, causes damage to the brain. The severity of TBI
can range from mild (a concussion) to severe (coma). A concussion may
cause temporary confusion and headache, while a severe TBI can be
fatal. Levels of brain trauma are characterized by the following:”#
The term “mild brain injury” can be misleading. The term “mild” is used
in reference to the severity of the initial physical trauma that caused the
injury. It does not indicate the severity of the consequences of the injury.
The Centers for Disease Control as part of its Report to Congress on
Mild Traumatic Brain Injury in the United States developed the
following definition of mild brain injury:
A case of mild traumatic brain injury is an occurrence of injury to the
head resulting from blunt trauma or acceleration or deceleration forces
with one or more of the following conditions attributable to the head
injury during the surveillance period:
 Any period of observed or self-reported transient confusion,
disorientation, or impaired consciousness;
 Any period of observed or self-reported dysfunction of memory
(amnesia) around the time of injury;
 Observed signs of other neurological or neuropsychological
dysfunction, such as—
o Seizures acutely following head injury;
o Among infants and very young children: irritability, lethargy,
or vomiting following head injury;
o Symptoms among older children and adults such as
headache, dizziness, irritability, fatigue, or poor
concentration, when identified soon after injury, can be used
to support the diagnosis of mild TBI, but cannot be used to
make the diagnosis in the absence of loss of consciousness or
altered consciousness. Further research may provide
additional guidance in this area.
Any period of observed or self-reported loss of consciousness
lasting 30 minutes or less.
The definition focuses on the actual injury or symptoms, not the possible
consequences. For many people, there are challenges in getting an
accurate diagnosis and treatment, especially when there is no
documented or observed loss of consciousness. There does not need to
be a loss of consciousness for a brain injury to occur.
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Diagnosis of Traumatic Brain Injury
“What are the Levels of TBI?
Mild (Concussion): A person with a mild TBI, which is also called a
concussion, may remain conscious or may experience a loss of
consciousness for a few seconds or minutes or perhaps not at all. Typical
symptoms can include confusion, memory difficulties, headache and
behavioral problems.
Moderate: A person with a moderate TBI is often lethargic with their
eyes open to stimulation and may lose consciousness for 20 minutes to
six hours. He/she may experience some brain swelling or bleeding
causing sleepiness, but is still able to be aroused.
Severe (Coma): A person with a severe TBI is typically in a coma state
for more than six hours.
A TBI does not include a stroke, an infection in the brain or a brain
tumor.”#
TBI can cause a wide range of functional short- or long-term changes
affecting thinking, sensation, language, or emotions.
 Thinking (i.e., memory and reasoning);
 Sensation (i.e., touch, taste, and smell);
 Language (i.e., communication, expression, and understanding);
and
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Emotion (i.e., depression, anxiety, personality changes,
aggression, acting out, and social inappropriateness).1
TBI can also cause epilepsy and increase the risk for conditions such as
Alzheimer’s disease, Parkinson’s disease, and other brain disorders that
become more prevalent with age. About 75% of TBIs that occur each
year are concussions or other forms of mild TBI.
Repeated mild TBIs occurring over an extended period of time (i.e.,
months, years) can result in cumulative neurological and cognitive
deficits. Repeated mild TBIs occurring within a short period of time
(i.e., hours, days, or weeks) can be catastrophic or fatal.”#
TBI Score
GCS
PTA
LOC
Mild
13-15
<1 Day
30 Minutes
Moderate
9-12
>1 Day to <7 Days
>30 Minutes to <24 Hours
Severe
3-8
>7 Days
>24 Hours
A contusion is a distinct area of swollen brain tissue, mixed with blood
released from broken blood vessels. A contusion can occur in absence of
skull fractures in response to shaking of the brain back and forth within
the confines of the skull. This is called the 'coup - contrecoup
mechamism'. Contusions are typically found on the inferior frontal lobes
and poles of the frontal lobes, the lateral and inferior aspects of the
temporal lobes and the cortex above and below the operculum of the
sylvian fissures. In addition, rotational movements of the brain can cause
diffuse axonal injury (DAI). The patient with DAI typically may be
unconscious with little radiological findings on CT scanning. This
results from microscopical damage to individual nerve cells (neurons)
and loss of connections among neurons. Due to the rapid stretching of
axons the cytoskeleton is damaged, disrupting cell function (Smith et al.,
2003).
Skull fractures, especially at the base of the skull, can cause cranial
nerve injuries. The facial nerve, is the most commonly injured cranial
nerve in TBI causing paralysis of facial muscles. Skull fractures can tear
the membranes that cover the brain, leading to leaks of cerebrospinal
fluid (CFS). Intracranial CFS leaks may cause a subdural hygroma.
Extracranial CFS leaks through the nose and ears allow air and bacteria
to enter the skull, thus causing pneumocephalus or infections such as
meningitis or brain abscess.
Intracranial hematoma is the most common cause of death and
deterioration after TBI. An epidural hematoma involves bleeding into
the area between the skull and the dura. A rupture of the middle
meningeal artery due to a fractured temporal bone, is the usual cause of
an epidural hematoma. It is an arterial bleeding with a fast increase in
pressure and is life threatening in de acute phase after TBI. With a
subdural hematoma, bleeding is confined to the area between the dura
and the arachnoid membrane. Subdural hematoma's are caused by
ruptured veins in the subdural space, don't grow as fast as epidural
hematoma's but may act a mass lesions causing morbidity and mortality.
Bleeding within the brain itself is called intracerebral hematoma.
In recent years hormonal problems from dysfunction of the pituitary
following TBI have received much attention. Pituitary dysfunction may
occur in the (sub-acute stage) after TBIand may develop within the first
year post onset. Especially the growth hormone axis and gonadotrophic
axis appear to be vulnerable after TBI. However, the incidence of
pituitary dysfunction due to TBI is still debated (van der Eerden et al.,
2010 and Schneider et al., 2007).
Many TBI patients have a polytrauma, injuries to other parts of the body
in addition to the head and brain. Trauma victims often develop
hypermetabolism or an increased metabolic rate, causing muscle wasting
and the starvation of other tissues. Complications related to pulmonary
dysfunction can include neurogenic pulmonary edema (excess fluid in
lung tissue), aspiration pneumonia (pneumonia caused by foreign matter
in the lungs), and fat and blood clots in the blood vessels of the lungs.
Blunt trauma to the chest can also cause cardiovascular problems,
including damage to blood vessels and internal bleeding, and problems
with heart rate and blood flow. Blunt trauma to the abdomen can cause
damage to or dysfunction of the stomach, large or small intestines, and
pancreas. A serious and common complication of TBI is erosive
gastritis, or inflammation and degeneration of stomach tissue. This
syndrome can cause bacterial growth in the stomach, increasing the risk
of aspiration pneumonia.#
What happens in a mild brain injury?
The brain is not a hard, fixed substance. It is soft and jello-like in
consistency, composed of millions of fine nerve fibers, and "floats" in
cerebral-spinal fluid within the hard, bony skull. When the head is struck
suddenly, strikes a stationary object, or is shaken violently, the
mechanical force of this motion is transmitted to the brain.
When the head has a rotational movement during trauma, the brain
moves, twists, and experiences forces that cause differential movement
of brain matter. This sudden movement or direct force applied to the
head can set the brain tissue in motion even though the brain is well
protected in the skull and very resilient. This motion squeezes, stretches
and sometimes tears the neural cells. Neural cells require a precise
balance and distance between cells to efficiently process and transmit
messages between cells. The stretching and squeezing of brain cells
from these forces can change the precise balance, which can result in
problems in how the brain processes information.
Any time the brain suffers a violent force or movement, the soft, floating
brain is slammed against the skull’s uneven and rough interior. The
internal lower surface of the skull, pictured to the left, is a rough, bony
structure that often damages the fragile tissues within the brain as it
moves across the bone surface. The brain may even rotate during this
process. This friction can also stretch and strain the brain’s threadlike
nerve cells called axons.
Although the stretching and swelling of the axons may seem relatively
minor or microscopic, the impact on the brain’s neurological circuits can
be significant. Even a “mild” injury can result in significant
physiological damage and cognitive deficits.
Another mechanism of injury involves changes that occur in the
neuron’s ability to produce energy for the cell’s vital functions in
structures called mitochondria. An initial increase in energy production
occurs followed by a dramatic decrease that affects the ability of the cell
to produce structural proteins to preserve the diameter of the axon. This
change occurs gradually after the time of impact and may be responsible
for the delay in symptoms sometimes observed.
As a person recovers, the cells re-establish the precise balance needed to
ensure effective information processing, but this may mean some
compensation or adjustments to the neural cell’s original alignments.
The more often neural cells must compensate or adjust to injury, the
more likely the task takes longer and may not be as complete. For
example, when a person sprains or fractures an ankle, professionals
recommend cold/heat treatments, rest and supports (i.e., cast, brace) and
specific exercises to help the ankle adjust to the injury and recover
maximal function. Depending on the severity of the ankle injury (i.e.,
sprain, fracture) and what is required after recovery (i.e., long distance
running, ballet), the injury to the ankle can disrupt a person’s life.
Obviously, a human brain is much more complicated than an ankle. Yet,
similarly, rest, supports (i.e., compensations, modifications) and
“exercises” (i.e., therapies, education) for the brain may be
recommended to rehabilitate and restore useful function. Depending on
the severity of the injury and what the person needs to do (i.e., care for a
family, return to work or school, manage a large company), a mild brain
injury can disrupt a person’s life for a short period of time or even
longer.
Diagnosis of Mild Brain Injury
Due to the diffuse and subtle nature of mild brain injury, it is common
for typical neuroimaging (CT scan or MRI’s) to show no evidence of
injury. The damage to the brain is a real injury. The limitation of these
brain imaging technologies is they often cannot detect mild brain injury.
Mild brain injury can often damage the "white matter" of the brain.
"White matter" consists of the axons of neurons (connections) in the
brain. This is much harder to capture or visualize using common types of
brain imaging.
There are newer, more sophisticated imaging technologies that show
promise in more effectively capturing the damage that occurs in a mild
brain injury. However these imaging technologies are currently much
more expensive, and are not as readily available. Some of the newer
imaging techniques include:
Positron Emission Tomography (PET)
Single Photon Emission Computerized Tomography (SPECT)
Functional Magnetic Resonance Imaging (fMRI)
Diffuse Tensor Imaging (DTI)
Neuropsychological assessment is typically used to assess the functional
impact of a mild brain injury. This assessment is normally done when
some type of brain dysfunction is suspected. A mild brain injury is often
initially diagnosed by evaluation of the symptoms a person reports after
sustaining the injury.
The assessment is comprised of a wide range of tests that objectively
measure specific brain functions. Testing includes a variety of different
methods for evaluating areas like attention span, orientation, memory,
concentration, language (receptive and expressive), new learning,
mathematical reasoning, spatial perception, abstract and organizational
thinking, problem solving, social judgment, motor abilities, sensory
awareness and emotional characteristics and general psychological
adjustment. The neuropsychological evaluation can be used as a starting
point for a plan of rehabilitation. It can assist brain injury professionals
in identifying specific cognitive areas that have been damaged, as well
as those areas still intact. You can read more about neuropsychological
evaluations and brain injury from the American Psychological
Association.
Mild Brain Injury and Concussion
It is important to understand that a concussion is a physical injury to the
brain that causes a disruption of normal functioning just like any other
physical injury disrupts your normal functioning. For example, some
ankle injuries (i.e., sprains and fractures) are more disruptive than
others, just as some brain injuries are more disruptive than others. The
better we understand any injury, the better our chances are for a speedier
and healthier recovery.
There is some confusion as to the definition of a concussion and the
definition of a mild traumatic brain injury (mTBI). Brain injury can be
viewed along a continuum that incorporates concussion, mild brain
injury, moderate brain injury and severe brain injury. Each type of brain
injury varies depending upon: (1) whether the person was unconscious;
(2) how long he/she was unconscious; (3) the length of their amnesia;
(4) the resulting cognitive, behavioral and physical problems; and (5) the
recovery.
The definition for a concussion and a mTBI tend to overlap.
To further clarify, a concussion is defined as a trauma (i.e., a blow to the
head or a serious whiplash) that induces an alteration in mental status
(physical or cognitive abilities) that may or may not involve a loss of
consciousness. Concussion as detailed by guidelines developed by the
American Academy of Neurology (AAN) and the Brain Injury
Association (BIA), commonly is divided into three different types.
Grade 1 Concussion
 Person is confused but remains conscious
 SIGNS: Temporarily confused, dazed, unable to think clearly, has
trouble following directions
 TIME: Symptoms clear within 15 minutes
Grade 2 Concussion
 Person remains conscious, but develops amnesia
SIGNS: Similar to Grade 1
 TIME: Symptoms last more than 15 minutes
Grade 3 Concussion
 Person loses consciousness
 SIGNS: Noticeable disruption of brain function exhibited in
physical, cognitive and behavioral ways.
 TIME: Unconsciousness for seconds or minutes
If concussion and mTBI are seen as part of the brain injury continuum,
with Grade 3 concussion and mTBI overlapping, one can get a better
understanding of how these definitions compliment each other and
enhance our understanding. The Brain Injury Association estimates that
approximately 75% of all brain injuries fall in the “concussion-mTBI
continuum.”

http://www.div40.org/pdf/NeuropscyhBroch2.pdf
What can I do if I have a mild brain injury?
Understanding the changes that have occurred from a brain injury is an
important part of the recovery process. This makes education and
awareness crucial for both the person with a brain injury as well as
family and friends. The person with an injury and others need to
understand that a “mild” brain injury can result in changes in thinking
and memory that can affect a person’s ability to return to their life.
While a person can “look fine,” brain injury is an invisible injury.
Research has shown that education and information about the possible
consequences can be helpful to the person with an injury and family
members. Some basic symptoms for family and friends to be aware of
include:
Early Symptoms:
 Headache
 Dizziness or vertigo
 Lack of awareness of surroundings
 Nausea with or without memory dysfunction
 Vomiting
Later Symptoms:
 Persistent low grade headache
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Lightheadedness
Poor attention and concentration
Excessiveness or easy fatigue
Intolerance of bright light or difficulty focusing vision
Intolerance of loud noises
Ringing in the ears
Anxiety and depressed mood
Irrability and low frustration tolerance#
Moderate to Severe TBI Overview
When the results of a head injury are worse than mild TBI or
concussion, the injury may be classified as moderate or severe TBI. The
factors used to define moderate TBI are:
 A loss of consciousness that lasts for more than 30 minutes but less
than 24 hours
 Memory loss after the traumatic event, called post-traumatic
amnesia or PTA, lasting for 24 hours to 7 days
 A Glasgow Coma Score of 9 – 12
Severe TBI is classified based on:
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A loss of consciousness that lasts for more than 24 hours
PTA lasting for 7 days or longer
A Glasgow Coma Score of 8 or less, which indicates that the
patient is in a coma
Moderate to severe traumatic brain injuries can include any of the signs
and symptoms of mild injury, as well as the following symptoms that
may appear within the first hours to days after a head injury:
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Loss of consciousness from several minutes to hours
Profound confusion
Agitation, combativeness or other unusual behavior
Slurred speech
Inability to awaken from sleep
Weakness or numbness in fingers and toes
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Loss of coordination
Persistent headache or headache that worsens
Repeated vomiting or nausea
Convulsions or seizures
Dilation of one or both pupils of the eyes
Clear fluids draining from the nose or ears
Children's symptoms
Infants and young children with brain injuries may lack the
communication skills to report headaches, sensory problems, confusion
and similar symptoms. In a child with traumatic brain injury, you may
observe:
 Change in eating or nursing habits
 Persistent crying and inability to be consoled
 Unusual or easy irritability
 Change in ability to pay attention
 Change in sleep habits
 Sad or depressed mood
 Loss of interest in favorite toys or activities#
Symptoms of Moderate to Severe TBI
The symptoms of moderate to severe TBI are very serious and can have
an effect on many aspects of the patient’s life. With moderate to severe
injuries, a coma is not uncommon. As the patient comes out of the coma,
they may have some of the following symptoms:
 a headache that gets worse or does not go away
 dizziness
 pain
 fatigue
 repeated vomiting or nausea
 convulsions or seizures
 the inability to wake up from sleep
 dilation of one or both pupils of the eyes
 problems speaking
 weakness or numbness in the hands and feet
loss of coordination
 confusion, restlessness, or agitation, and
 problems sleeping
Another symptom of TBI is memory loss, called post-traumatic amnesia,
or PTA. How long the amnesia lasts helps determine how badly the
brain is injured. If PTA lasts for more than one week, long-term
problems with thinking, planning, behavior and personality are more
likely.

Potential Effects of Moderate to Severe TBI
The long-term symptoms of TBI can be divided into several categories,
including physical changes, cognitive effects, sensory effects, perceptual
effects, social/emotional changes and others. You’ll find a partial list of
these symptoms and effects below. Keep in mind that the symptoms and
effects will vary greatly from one patient to another, depending on the
severity of the TBI.
PHYSICAL
Physical Changes:
 Sleep disorders
 Loss of stamina
 Appetite changes
 Physical paralysis/spasticity
 Chronic pain
 Control of bowel and bladder
 Seizures
 Difficulty regulating body temperature
 Hormonal challenges
COGNITIVE
Cognitive Difficulties relating to:
 Attention
 Concentration
 Distractibility
 Memory
 Speed of Processing
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Confusion
Perseveration, the abnormal persistent repetition of a word gesture
or act.
Impulsiveness
Language Processing
Executive functions," which are involved in brain processes such
as planning, cognitive flexibility, abstract thinking, rule
acquisition, initiating appropriate actions and inhibiting
inappropriate actions, and selecting relevant sensory information.
SPEECH and LANGUAGE
Speech and Language Effects:
 Receptive Aphasia – which involves difficulty understanding the
spoken word
 Expressive Aphasia - in which the patient knows what he wishes to
say but is unable to get the words out. In some cases, the patient is
able to perceive and comprehend both spoken and written language
but is unable to repeat what he sees or hears.
 Slurred speech
 Speaking very fast or very slow
 Problems reading
 Problems writing
SENSORY
Sensory Difficulties relating to the interpretation of:
 Touch
 Temperature
 Movement
 Limb position
 Fine discrimination
Perceptual Effects:
 Difficulty integrating and understanding information gained
through the five senses
Vision:
 Partial or total loss of vision
Weakness of eye muscles and double vision (diplopia)
 Blurred vision
 Problems judging distance
 Involuntary eye movements (nystagmus
 Intolerance of light (photophobia)
Hearing:
 Decrease or loss of hearing
 Ringing in the ears (tinnitus)
 Increased sensitivity to sounds
Smell:
 Loss or diminished sense of smell (anosmia)
Taste:
 Loss or diminished sense of taste
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SOCIAL EMOTIONAL
Social-Emotional Effects:
 Dependent behaviors
 Fluctuating emotions
 Lack of motivation
 Irritability
 Aggression
 Depression
 Lack of inhibition
 Denial/lack of awareness
Types of Severe TBI
There are two types of severe TBI, each described below by associated
causes:
Closed – an injury to the brain caused by movement of the brain within
the skull. Causes may include falls, motor vehicle crash, or being struck
by or with an object.
Penetrating – an injury to the brain caused by a foreign object entering
the skull. Causes may include firearm injuries or being struck with a
sharp object.
Secondary Complications
Secondary complications are conditions that develop over a period of
hours to days after the traumatic brain injury occurs. Increased
intracranial pressure is one example of a secondary complication.
It’s common for swelling and fluid build-up to occur after any part of the
body is injured. In some cases, when the brain is injured, swelling occurs
and fluid builds up inside the skull, or cranium. This is serious because
there is no place for swollen tissues to expand and no adjoining tissues
to absorb excess fluid. The higher pressure caused by the swelling of the
brain inside the skull is referred to as increased intracranial pressure.
Medical personnel measure a patient’s intracranial pressure, or ICP,
using a probe or catheter. The instrument is inserted into the brain
through a hole drilled into the skull, and is connected to a monitor that
registers the patient's ICP.
Hypoxia is the lack of oxygen to any tissue or organ in the body.
Cerebral hypoxia refers to a condition where there is a decrease of
oxygen supply to the brain, even if there is normal blood flow.
Symptoms of mild cerebral hypoxia include inattentiveness, poor
judgment, memory loss, and a decrease in motor coordination.
Prolonged hypoxia can cause coma, seizures, and even brain death.
Hypoxia is a possible secondary complication that can develop over a
period of hours to days after the initial TBI.
Anoxia is the complete lack of oxygen to any tissue or organ in the
body. Anoxic brain injury is when the brain is deprived of oxygen and
blood flow, causing damage to the brain cells. The longer an individual
goes without oxygen to the brain, the more damage occurs. Brain cells
are extremely sensitive to oxygen deprivation and can begin to die
within five minutes after the oxygen supply has been cut off. This can
lead to permanent brain damage. For this reason, first responders are
trying to administer oxygen as quickly as possible following an injury.
Hypotension is defined as blood pressure that is below the normal
expected for an individual in a given environment. Hypotension is the
opposite of hypertension, which is abnormally high blood pressure.
When blood pressure drops below a certain level, oxygen and other
nutrients are not efficiently delivered to the brain. This can lead to
dizziness and fainting or be an indication of other serious conditions.
Severely low blood pressure can lead to a life-threatening condition
called shock.#
Problems with cognition (thinking, memory, and reasoning) and
behavior or mental health (depression, anxiety, personality changes,
aggression, acting out, and social inappropriateness) are amongst the
most frequent sequelae after TBI.
Dikmen et al. (2009) performed a systematic review to examine the
relation between TBI and cognitive impairments 6 months or longer post
injury. There was a clear evidence of an association between penetrating
head injury and long-term cognitive impairments. Pre-injury
intelligence, volume of brain tissue lost and the brain region damaged
are important modifiers of this association. Severe TBI is clearly related
to long-term cognitive defects and there is suggestive evidence that this
is true for moderate TBI as well. There is insufficient evidence to
determine a relationship between a single, mild TBI and long-term
cognitive deficits. Stulemeijer et al. (2007) that 39% of patients that
suffered a mild TBI reported cognitive complaints 6 months post onset.
Lower educational levels, emotional distress, personality and poorer
physical functioning were related to cognitive complaints. This is not the
case for injury characteristics. Furthermore, the self rated cognitive
complaints were not related to outcome of neuropsychological testing.
Especially in mild TBI patients, long term complaints may be related to
premorbid traits and physical and emotional state factors rather than to
actual cognitive impairments.
TBI is strongly associated with several neurologic disorders 6 months or
more after injury (Bazarian et al., 2009). Seizures are associated with
most types of TBI. About 25 percent of patients with brain contusions or
hematomas and about 50 percent of patients with penetrating head
injuries will develop seizures within the first 24 hours of the injury.
These immediate seizures do not seem to be linked to the development
of post-traumatic epilepsy (recurrent seizures occurring more than 1
week after the initial trauma). After penetratingTBI 32%-53% suffer
from seizures. After a closed TBI the seizure risk varies with the
initialTBI severity. Compared to the healthy population the risk
increases 17-95 times after severe TBI, 2,9 to 6,6 times after moderate
TBI and 1,5 times in mild TBI resulting in LOC or PTA.
Neurodegenerative disorders such as dementia of the Alzheimer's type
(DAT) and Parkinsonism are related to mild and moderate TBI. DAT is
a progressive, neurodegenerative disease characterized by dementia,
memory loss, and deteriorating cognitive abilities. A moderate TBI
increases the risk of DAT with a hazard ratio (HR) of 2.32. In case of a
severe TBI the HR for DAT is 4.51. For the sake of ease, one could say
that the risk for DAT in patients with a moderate TBI is 2.32 times
compared to those who have not suffered a TBI. Parkinsonism may
develop years after TBI as a result of damage to the basal ganglia. It is
characterized by tremor or trembling, rigidity or stiffness, slow
movement (bradykinesia), inability to move (akinesia), shuffling walk,
and stooped posture. The association between TBI and parkinsonism has
not been studied as extensively as in DAT. However significant
associations between PD and TBI have been established. Professional
career boxers have in increased risk for dementia pugilistica also called
chronic traumatic encephalopathy or the punch-drunk syndrome. Mild
cases may present with slurring dysarthria, gait ataxia, disequilibrium
and headache. Symptoms begin anywhere between 6 and 40 years after
the start of a boxing career, with an average onset of about 16 years.
Mental and physical abilities may decline resulting in dementia and
parkinsonism.
It is difficult to predict how well someone who has had a brain injury
will recover, partly because there is no test a doctor can use to predict
recovery. The Glasgow Coma Scale is used to determine the initial
severity of a brain injury. It is often used at the scene of the accident or
in the emergency room. This scale uses eye movements and ability to
speak and move other parts of the body to determine the seriousness of
the injury. Ask your doctor to explain the tests used to determine your
loved one’s ability to recover.
Your loved one’s prognosis will depend on many factors, including the
severity of the injury, the type of injury, and what parts of the brain have
been affected. Prompt diagnosis and treatment will help the recovery
process.
Social functioning after traumatic brain injury
Social outcome or participation after TBI is a multilayered concept that
encompasses domains such as mobility, domestic life, interpersonal
interactions and relationships, and community, social and civic life.
Information about the course and prognosis of participation after TBI is
necessary to determine which patients are at risk for an unfavourable
outcome and to optimize the use of limited health care and social
resources. For TBI patients and their relatives, early information on
prognosis is important for adequate coping and anticipating long term
consequences. However, most studies have focused on short-term
outcome, 6 months to 1 year post onset. Temkin et al. (2009) performed
a systematic review on social functioning after TBI observed at least 6
months after the injury. They conclude that there is a dose-response
relationship between the severity of the injury and social outcomes.
However there is insufficient evidence to determine at what level of
severity the adverse effects are demonstrated. Willemse-van Son
performed a 3 years prospective study on patients with moderate and
severe TBI and used the Community Integration Questionnaire (CIQ) as
primary end-point. At three months post injury a decline had occurred
compared to the pre-injury situation regarding home integration, social
integration, and productivity. Substantial improvement occurred in the
first year post-injury. Improvement continued from year 1 to 3 years
post injury. Age, the post-acute Barthel Index and the pre-injury CIQ
scores were the major determinants of community integration three years
post-injury. It seems as if clinical determinants regarding TBI severity
like the GCS-score, abnormalities on CT scanning and hypoxia,
hypotension or hypothermia in the acute stage predict short term
outcome rather than long term outcome.
These findings were substantiated in 2 systematic reviews on activity
limitations and participation restrictions 6 months and one year postinjury (Husson et al., 2010 and Willemse-van Son, 2009). Strong
evidence for predicting outcome at six months was found for GCS on
admission, GCS motor score, midline shift on CT scan, subdural
haematoma and pulsatility index. For ongoing disability one year postinjury, older age, pre-injury unemployment, substance abuse, and severe
disability at rehabilitation discharge were strong predictors. Pre-injury
unemployment, longer posttraumatic amnesia, substance abuse, and
more disability at rehabilitation admission, were strong predictors for
being unproductive one year post-injury.
Although these profiles are best evidence for prognosis of restrictions in
activities and participation one year after TBI, they seem to be of limited
value. Most factors are not modifiable by prevention or treatment.
Hence, it is not possible to change the course and prevent a future worse
outcome. Further, the identified prognostic factors are of limited value in
planning adequate and cost-effective long-term care. In the Rotterdam
TBI study, the presence of unmet needs in patients with moderate and
severe TBI was assessed three to five years post-injury with the
shortened version of the Impact on Participation and Autonomy
Questionnaire (Willemse-van Son, thesis 2009). 17% of the patients
reported long-term unmet needs. Most unmet needs concerned work
(31%), education (45%), and supporting others (46%).
Overall it can be concluded that much information is needed on long
term outcome at the level of activities and participation after mild,
moderate and severe traumatic brain injury. Which patients are at risk of
losing their jobs, of developing marital or parental difficulties? Who is at
risk of developing substance abuse, will become dependent in
transportation or leisure activities or will depend heavily on the
caregiver? What patient can be helped by treating his depression or
posttraumatic stress disorder and what patient will benefit from
structured day time activities. These are examples of unanswered
questions that are of paramount importance in clinical practice. As long
as these issues are not dealt with, traumatic brain injury patients as well
as their caregivers should be followed-up over long periods of time.
Specific needs for people with Traumatic Brain
Injury
In the USA 1.6 million people sustain a TBI each year, approximately
50.000 people die from a TBI and 125.000 are disabled one year after
injury. In 2000 it was estimated that the economic burden of TBI of all
severities in the USAwas about 60 billion dollars
“Clients who have had a head injury have special needs in verbal
communication about sexuality. Common needs are:
 more time than the average person to take in information
 more time to process information
 more time to respond
 more repetition
 small chunks of information at a time
 external limit-setting or prompts about appropriate behaviour
People who have had TBI often get easily overloaded with too much
information delivered too fast. People who have memory problems need
a lot of repetition and reminders.
Taking time to plan how best to deal with a client's sexual issues saves
time in the long term. The longer an undesirable behaviour continues,
the harder it is to change. There will be a short term increase in work to
tackle the problem, but a decrease in effort in the future once it is
resolved.
Inappropriate sexual behaviour is not personal. The client is not doing it
to intentionally upset the worker. He or she is acting out the effects of
the TBI while the worker is present. Keeping the focus on the behaviour
that needs to be addressed rather than feeling personally involved helps
to maintain distance between the worker and the client's behaviour.”#
Some important information to share, from families and people who
have sustained a mild brain injury:
The recovery from a mild injury is not always quick.
For mild brain injury, the issues are the same as moderate to severe brain
injury. While there are general guidelines for recovery, there can be
wide individual variations in the timeframe for recovery. It can take
several weeks, or several months for symptoms to fully resolve.
Recovery is often uneven.
There will be “good days” and “bad days.” This is normal in recovering
from a brain injury. An important thing to keep in mind: on the “good
days”, people want to get as much done as they can. Often, this can lead
to overdoing it, which can bring back symptoms that were previously
gone. Even on the good days, it is important to give yourself more time
to complete tasks, and to listen to your body. You cannot “tough out” a
brain injury.
Create the best possible environment for recovery.
Substances like caffeine, alcohol and nicotine can affect a person with a
brain injury much more than it did before the injury. Be aware of the
possible consequences of alcohol on recovery post injury. It is
recommended to abstain from alcohol consumption during the recovery
period post injury. You can read more about alcohol use and recovery
from a brain injury at the Ohio Valley Center for Brain Injury
Prevention and Rehabilitation.
Give yourself more time to complete things.
Issues like fatigue, attention and memory issues can cause delays in
completing tasks that were easily done before the injury. Allowing
additional time to do things like laundry, menu planning, shopping, bill
paying can help. Thinking out the steps needed to complete tasks and
writing them down can be helpful too. Better planning can decrease
stress and anxiety.
Professional help is important.
It is important to understand the effects of a brain injury. The injury
itself can impair the ability of a person to accurately assess their
abilities. And once problems are identified, often a person with a mild
brain injury struggles with figuring out effective strategies to
compensate for problem areas. Working with a trained brain injury
professional can help identify specific problem areas, and can help
implement effective strategies. You do not need to figure out brain
injury all on your own. There are useful books and resources available.
Support groups can be helpful.
Brain injury can be isolating. People say things like “you look fine,”
with the implication that you should be fine. It is an invisible injury.
Sometimes talking with others who have experienced similar
experiences can help a person with a brain injury understand they are not
the only one dealing with these issues. Contact the Brain Injury
Association in your state to find out about support groups or other
resources that may be useful to you.#
Rehabilitation
The goal of rehabilitation is to help your loved one live and function as
independently as possible. Rehabilitation helps the body heal and assists
the brain in relearning processes so that an individual recovers as
quickly and efficiently as possible. Rehabilitation will also help the
person with TBI learn new ways to do things if any previous abilities
have been lost.
After your loved one’s initial life-saving treatment at the time of the
injury, he or she will most likely start a rehabilitation program and will
work with a team of specialists. The person with TBI and his or her
family are the most important members of the rehabilitation team.
Family members should be included in the rehabilitation and treatment
as much as possible. Some of the other professionals who may be part of
this team include:
 Physiatrists - doctors who are experts in rehabilitation medicine
who typically oversee the rehabilitation process.
Neurologists - doctors who are trained in the diagnosis and
treatment of nervous system disorders, including diseases of the
brain, spinal cord, nerves, and muscles.
 Occupational, physical, speech and language therapists therapists that help the person regain thinking skills,
communication skills, physical abilities and behavioral skills.
 Neuropsychologists - specialized psychologists who focus on
thinking skills and behavior problems.
 Vocational rehabilitation experts - employment coaches who
help with regaining job skills.
It is important to remember that rehabilitation may last years and that
your loved one will benefit from the ability to receive rehabilitation
services throughout this time. Appropriate programs and treatments will
also change as your family member’s needs change.
A variety of treatment and rehabilitation programs may help your loved
one. Some of the different types of rehabilitation facilities include:
 Acute rehabilitation - an intensive rehabilitation program.
 Coma treatment centers - provide coma-specific medical care.
 Transitional living programs - nonmedical residential programs
that teach skills for community living.
 Long-term care and supervised living programs - residential
facilities that provide care and
 rehabilitation to people with TBI who are not able to live
independently.
 Behavior management programs - typically community-based
(i.e., not residential) programs that teach self-control and
appropriate social behaviors.
 Day treatment programs - provide rehabilitation during the day
so the person can return home at night.
The Brain Injury Association of America’s Guide to Selecting and
Monitoring Brain Injury Rehabilitation Programs is a good resource for
figuring out what questions to ask a rehabilitation provider and can help
in choosing a rehabilitation facility. The Brain Injury Association of
America also publishes the National Directory of Brain Injury
Rehabilitation Services, which lists services in each state.

How Much Therapy is Too Much Therapy?
We used to think that most recovery took place within 12-18 months
after a brain injury. We know now that recovery can continue for longer
periods; however, more likely at a slower pace. Unfortunately, the
majority of people can’t afford to provide the optimal amount of
rehabilitation or care. In fact, the Brain Injury Association of America
estimates that only 5 percent of individuals with severe brain injuries
have adequate funding for long-term treatment.
Any rehabilitation during this period should be focused on functional
goals. Your description leads me to think that your son’s speech may be
difficult to understand or that he may require a great deal of assistance to
transfer from his wheelchair to the bed. Generally speaking, one hour a
week of physical therapy or speech therapy at this stage may not be
enough to see progress. Currently, researchers are trying to establish
how much therapy is enough and which therapies are the most effective
when.
Depending on your family’s circumstances and your ability to spend
time at home practicing skills, a re-evaluation and a few sessions of
physical therapy may be useful in setting up a home exercise program to
prevent complications such as contractures or skin breakdown. Speech
therapy for a limited time could help develop an alternative
communication system such as a communication board if verbal
expression is frustrating for your son.#
Caregiving
When someone suffers a Traumatic Brain Injury (TBI), the entire family
is affected. Studies show that caregivers of people who have suffered a
brain injury may experience feelings of burden, distress, anxiety, anger
and depression. If you are caring for a partner, spouse, child, relative or
close friend with TBI, it is important to recognize how stressful this
situation can be and to seek support services.
Services that may be most helpful to you include in-home assistance
(home health aides or personal care assistants), respite care to provide
breaks from caregiving, brain injury support groups, and ongoing or
short-term counseling for caregivers to adjust to the changes that have
come as a result of the injury. You also may need to ask your support
system of family, friends and community members for help with your
loved one’s care, so that you don’t get burned out. (See Family
Caregiver Alliance’s Fact Sheet: Taking Care of YOU: Self-Care for
Family Caregivers for additional tips on taking care of yourself.)
In your role as a caregiver, you will probably find that it can be difficult
to find appropriate and adequate services for your loved one. It is
important to know that you will most likely need to be persistent in your
search for assistance. You should use your network of family and
friends, as well as professionals, to get tips about available resources.#
Specific tests, equipment, medication, etc.
“Tests and diagnosis
By Mayo Clinic staff
Because traumatic brain injuries are usually emergencies and because
consequences can worsen swiftly without treatment, doctors usually
need to assess the situation rapidly.
Glasgow Coma Scale
This 15-point test helps a doctor or other emergency medical personnel
assess the initial severity of a brain injury by checking a person's ability
to follow directions and move their eyes and limbs. The coherence of
speech also provides important clues. Abilities are scored numerically.
Higher scores mean milder injuries.
Information about the injury and symptoms
If you observed someone being injured or arrived immediately after an
injury, you may be able to provide medical personnel with information
that's useful in assessing the injured person's condition. Answers to the
following questions may be beneficial in judging the severity of injury:
 How did the injury occur?
 Did the person lose consciousness?
 How long was the person unconscious?
 Did you observe any other changes in alertness, speaking, coordination
or other signs of injury?
Where was the head or other parts of the body struck?
 Can you provide any information about the force of the injury? For
example, what hit the person's head, how far did he or she fall, or was
the person thrown from a vehicle?
 Was the person's body whipped around or severely jarred?
Imaging tests
 Computerized tomography (CT). A CT scan uses a series of X-rays
to create a detailed view of the brain. A CT scan can quickly visualize
fractures and uncover evidence of bleeding in the brain (hemorrhage),
blood clots (hematomas), bruised brain tissue (contusions) and brain
tissue swelling.
 Magnetic resonance imaging (MRI). An MRI uses powerful radio
waves and magnets to create a detailed view of the brain. Doctors don't
often use MRIs during emergency assessments of traumatic brain
injuries because the procedure takes too long. This test may be used
after the person's condition has been stabilized.
Intracranial pressure monitor
Tissue swelling from a traumatic brain injury can increase pressure
inside the skull and cause additional damage to the brain. Doctors may
insert a probe through the skull to monitor this pressure.”#

TR Implications when working with people who
have Traumatic Brain Injury
Three scholarly articles from the Therapeutic Recreation Journal were
reviewed to explore the implications of therapeutic recreation in treating
a traumatic brain injury. Following is a review of all three articles.
Article 1: The Impact of a Therapeutic Recreation Community Liaison
on Successful Re-integration of Individuals with Traumatic Brain
Injury#
This article follows one woman’s inpatient and outpatient treatment as
she recovered from a TBI. During her inpatient treatment her individual
needs were assessed and goals of “improv[ing] her motor skills,
encourag[ing] social interaction, and increas[ing] her endurance.”# After
she was released she was put in contact with a Therapeutic Recreation
Community Liaison (TRCL) “whose purpose was to build bridges
between hospital-based therapeutic recreation treatment and communitybased leisure programs.”# In the beginning she needed a great deal of
help from the TRCL. They organized recreational outings with her to aid
in her rehabilitation and participated in the outings with her. After
several months she began to rely on them less and less. By the end of the
article she would only come to them occasionally for referrals. This
article utilized the leisure ability model.
Article 2: “A Multidisciplinary Approach to Teaching Anger Coping
After Sustaining a Traumatic Brain Injury: A Case Report”#
This article from the Therapeutic Recreation Journal sheds light on
treatment of anger issues in people with TBIs. The following excerpt
from the article describes the premise for the study:
“In addition, emotional side effects may be experienced, such as
agitation, irritability, apathy, egocentricity, impulsivity, lack of
inhibition, depression, denial, withdrawal, and lack of tolerance
(Carter, Van Andel & Robb, 1995). Carter et al. suggested that
emotional and personality changes caused by the trauma to the
brain may have more of an impact on the individual's life than the
actual cognitive and physical impairments. For example, if the
individual experiences difficulty controlling verbal or physical
aggression, he or she would likely experience adverse effects such
as difficulty maintaining friendships or professional relationships.
Furthermore, a person might experience a decrease in ability to
appropriately cope with anger-producing situations as a result of
the TBI, thus rendering that person potentially dangerous to his or
herself or other people.”#
This article follows the APIE process (Assessment, Planning,
Implementation, and Evaluation) to go through the program used to help
an individual with a TBI better cope with the secondary symptom of
anger.
Article 3: “A Personal Narrative of Involvement in Post-Traumatic
Brain Injury Rehabilitation:
What Can We Learn for Therapeutic Recreation Practice?”#
From abstract:
“This paper is an autoethnographic exploration of one woman’s
illness narrative. It provides an in-depth understanding of her lived
experience of rehabilitation after sustaining a traumatic brain
injury and poly-trauma. The narrative confirms the importance of
providing people with self-determined choice as a primary
component of rehabilitation. The voice and values of clients are
integral to professional judgment. This narrative supports clients’
personal choice and freedom during the rehabilitation process as a
means of increasing their sense of self-determination and
empowerment while improving overall health outcomes.”#
Study showing the implications of aquatic therapy on people with
TBI.
“”Aquatic Rehabilitation
As a result of the myriad of deficits that can occur following a TBI,
rehabilitation specialists are presented with a challenging opportunity to
devise appropriate rehabilitation programs and adapted physical activity
specialists to provide lifelong physical activity and recreation programs
(Driver, 2002).
Specifically, aquatic recreation therapy allows an individual with a TBI
to attempt patterns of movement in the water without fear of falling or
weakness (Driver, O'Connor, Lox, & Rees, 2003). Further, completing
movements in the water leads to strengthened postural muscles and
increased stability. These benefits are particularly important to people
with brain injuries whose balance may be compromised (Hrenko, Rees,
Lox, & O’Connor, 2003).
Movement exploration in the water helps individuals understand their
bodies, which is especially applicable to people with a brain injury who
often lack feeling and knowledge of what their body is capable of doing
(Lepore, Gayle, & Stevens, 1998). Some therapeutic psychomotor
effects of water exercise include muscle relaxation, relief of pain and
muscle spasms, maintenance or increased range of motion in joints, and
improvement in muscular strength and endurance. This may lead to an
increase in enjoyment of life, self-esteem, and self-awareness, as
individuals are able to complete tasks on their own (Lepore, Gayle, &
Stevens, 1998).
Therefore, it is important to include recreation programs, such as
adapted aquatics, that help to tackle the cognitive, physical, and social
problems resulting from a brain injury (Zoerink & Lauener, 1991).
Programs in rehabilitation are usually planned around the level of
cognitive functioning a person exhibits (Lepore, 1987). The Adult Head
Trauma service at Rancho Los Amigos Hospital (Downey, CA) has
formulated a description of the levels of cognitive functioning at each
stage of recovery:
 Level 1 No response
 Level 2 Generalized Response
 Level 3 Localized Response
 Level 4 Confused - Agitated
 Level 5 Confused – Inappropriate – Non-agitated
 Level 6 Confused – Appropriate
 Level 7 Automatic - Appropriate
 Level 8 Purposeful and Appropriate
The revised 10 level scale includes:
 Level 9 Purposeful, Appropriate - Stand-By Assistance on Request
 Level 10 Purposeful, Appropriate - Modified Independent
Individuals in levels 1-4 are not appropriate for community aquatics
(level one – person is comatose; level 2 & 3 – person shows inconsistent
stimulus response; level 4 – person is confused, and exhibits bizarre
behavior, often aggressive) (Lepore, 1987).”#
Resources (local, state, national, & international)
Resources
Brain Trauma Foundation
http://www.braintrauma.org
Brain Injury Association of America
http://www.biausa.org/
Find your state BIA affiliate: http://www.biausa.org/state-affiliates.htm
National Brain Injury Information Center: 1.800.444.6443 (brain injury
information only)
National Resource Center for Traumatic Brain Injury (NRCTBI)
http://www.tbinrc.com/
Brainline
http://www.brainline.org/
TBI Education
http://www.cbirt.org/tbi-education/
Family Caregiver Alliance
http://www.caregiver.org/caregiver/jsp/home.jsp
TBI Recovery Center
http://www.tbirecoverycenter.org/
Social Security Disability Insurance (SSDI) & Supplemental Security
Income (SSI)
www.ssa.gov or (800) 772-1213.
Centers for Independent Living (CIL)
http://www.virtualcil.net/cils
National Disability Rights Network Protection and Advocacy for
Individuals with Disabilities
www.napas.org
Centre For Neuro Skills:The Bridge to a Meaningrul Recovery
http://www.braininjuryresources.org/
The Glossary of TBI Terms
http://www.neuroskills.com/resources/glossary.php
What is TBI?
http://www.whatistbi.org
Other Related Websites
http://www.ninds.nih.gov/disorders/tbi/tbi.htm
http://www.cdc.gov/traumaticbraininjury/
http://www.mayoclinic.com/health/traumatic-braininjury/DS00552
http://en.wikipedia.org/wiki/Traumatic_brain_injury
If you suspect you have a mild brain injury, contact a brain injury
professional to help with the diagnosis and treatment of a brain injury.
Also contact the Brain Injury Association in your state. State Brain
Injury Associations will have information to share and can connect you
with support groups, programs and professionals who understand the
injury.
Possible youtube videos
http://www.youtube.com/watch?v=U1ybfdb7YvM
http://www.youtube.com/watch?v=m0xuJtVVK8A
Too long for class, but a great one to watch:
http://www.youtube.com/watch?v=VZnALI7Lz1A
Appendix
The following are research studies done that
involve therapeutic recreation and Traumatic Brain
Injuries
The Impact of a Therapeutic Recreation
Community Liaison on Successful Re-integration
of Individuals with Traumatic Brain Injury
Sharon Baker-Roth, Eileen McLaughlin, David Weitzenkamp, and Lori Womeldorff
This case history describes a client's use of Therapeutic Recreation Community Liaison (TRCL), a on the
reintegration of a woman with a traumatic brain injury. The thirty year old woman, who was in an automobile
wreck, was a very active independent woman before her injury. After injury, her self esteem, which appeared low,
made her reluctant to participate in recreational activities with unfamiliar people. Over the course of three years,
leisure recommendations by the TRCL focused on re-establishing trust in unfamiliar people and positive self esteem,
while providing positive alternatives to substance abuse, depression, and a troubled family life.
KEY WORDS: Traumatic Brain Injury, Community Integration, Self Esteem, Substance Abuse
Sharon Baker-Roth, BA, CTRS, is a CTRS functioning as a Therapeutic Recreation Community Liaison for
individuals with traumatic brain injury at Craig Hospital. Eileen McLaughlin, BA, is a community reintegration
specialist who assists persons with traumatic brain injury in returning to work, school, or volunteerism in the
community. David Weitzenkamp, BA, is a research assistant at Craig Hospital. Lori Womeldorff, BA, RTR, CTRS, is
a CTRS on the brain injury team at Craig Hospital.
316 Therapeutic Recreation JournalBiographical & Demographic Information
The motor vehicle crash on June 19,1992 that left Gabrielle with a brain injury was the culmination of a seemingly
troubled ado- lescent and adult life. Her father died in an alcohol related car crash when she was twelve years old.
Gabrielle was placed in a juvenile center as a teenager where her son would later be placed for his own delinquent
behavior. She admitted regularly abusing drugs and alcohol. In addition, she suffered from hemochromatosis, a
blood disease. De- spite these problems, Gabrielle was self-em- ployed, physically fit, out-going, and com- petitive.
Finally, at age thirty, she was in- volved in what was possibly a drug-related car wreck.
Gabrielle took the steering wheel in the chest on impact causing a tear on her heart. Her subsequent hypotension led
to a hypoxic brain injury. At the acute care hospital, she underwent surgery to repair the cardiac tear. She came out
of surgery in a coma with occasional tonic/clonic seizures. She was placed on Dilantin to manage the seizures.
Five days later, Gabrielle emerged from her coma demonstrating physical and cogni- tive deficits. Her therapists
discovered that she had problems with very severe apraxia, per- severation, and impaired problem solving abil- ity.
A month later, Gabrielle was transferred to Craig Hospital in Englewood, Colorado for comprehensive inpatient
rehabilitation. Upon admission, she was confused, though appro- priate. She cried whenever she had any diffi- culty.
She displayed dysarthria, impaired ex- ecutive functioning, apraxia (a motor planning disorder), paresis affecting
primarily her dom- inantrightwrist and hand, and dependence on a wheelchair for mobility. Her motor planning was
so impaired that, for example, she could not sequence the appropriate movements to pedal a stationary bicycle.
Purpose of the Case This case study demonstrates the success of an "empowerment" model and an multidimensional facilitation approach to the tran- sition and community involvement of Gabri- elle, a woman with a
severe brain injury. A full time Therapeutic Recreation Community Liaison (TRCL) works as a liaison between
clinical, transitional and community service providers. Funded and housed in the hospi- tal, the TRCL does not
provide direct ther- apy but coordinates local service providers to develop recreation programs and in- creased
opportunities for individuals with brain injuries. Additionally, the TRCL facili- tates inclusion of individuals with
brain in- juries in mainstream programs by addressing potential barriers to participation. Where programs already
exist, the TRCL educates the recreation providers about the specific needs of clients with brain injuries to ensure
safe participation. Information about avail- able programs is compiled and mailed to in- dividuals with brain injuries
living in the Metro Denver area. The TRCL laid a frame- work that welcomed, funded and supported Gabrielle's
redevelopment of leisure skills and participation in the community. Gabri- elle herself stated that the supported
recre- ational activities developed by the TRCL were a crucial factor in her dramatic func- tional gains and positive
life choice. Long after her physical and cognitive recovery had slowed, her performance level in vocational activities
and her independence in the com- munity increased dramatically with her im- proving confidence, using her coping
strat- egy of choice: Recreation.
Case Content
Pre-injury condition. Before her injury, Gabrielle used her leisure activities to chal- lenge and improve herself and
to cope with stress. In addition to being social, she was very active. Her activities tended to be physi- cal, such as
downhill skiing, skating, and thrift-store shopping; solitary and exacting, such as embroidery or needlepoint; or selfdestructive, such as substance abuse. Gabri- elle strove for perfection and independence recreationally and
vocationally. The same
Fourth Quarter 1995
317
stressors she faced before her injury—the blood disease, marital problems, and prob- lems with her son—were still
there. The in- jury reduced her ability to return to her pre- injury leisure activities and increased her risk of returning
to substance abuse. Inpatient sessions with a therapeutic recreation spe- cialist were designed to give her skills to
help her replace or adapt her prior leisure interests. In collaboration with the TRCL, these skills could then be
applied to move along the therapeutic recreation continuum.
Inpatient treatment. The initial assess- ment indicated Gabrielle did not have the endurance or cognitive ability to
participate in pre-injury physical leisure activities. She lacked the fine motor skills and motor plan- ning ability to
easily participate in less stren- uous activities such as embroidery or needle- point. Finally, Gabrielle expressed fear
of being perceived as disabled. She felt suffi- ciently frustrated by her physical limitations that she could not
comfortably interact so- cially and trust the help of unfamiliar people. Before being referred to the TRCL, initial
treatment by the hospital-based certified therapeutic recreation specialist (CTRS) and the rest of the rehabilitation
team worked to improve her motor skills, encourage social interaction, and increase her endurance. Therapeutic
recreation specific goals in- cluded increased self esteem, increased sense of physical accomplishment,
independence in leisure, and improved stress management.
In order to increase her post-discharge recreational opportunities, Gabrielle needed to address her impaired motor
skills, poor social comfort, and trust other's abilities to assist her. She worked on ceramics to im- prove her upper
extremity coordination and dexterity. Gabrielle was encouraged to par- ticipate in outings and group social events to
increase her social interaction and social comfort. Improvements in physical skills, which increased her comfort in
social situa- tions, allowed her to begin work on trusting unfamiliar people.
Outpatient treatment. In the middle of 318
November of 1992, Gabrielle was dis- charged from her inpatient status to continue her rehabilitation program as an
outpatient. In addition to her initial referral to the TRCL, her program, which included hospital-based sessions with
the a CTRS, OT, PT, speech pathology, psychology, and a vocational re- habilitation specialist, aimed to increase
Ga- brielle's independence in her community. Her endurance and coordination improved enough to walk
independently. Her cognitive ability also improved. More important, Ga- brielle had gained enough confidence in
her own physical ability to feel less fearful of new activities. Moreover, her motivation for participation in recreation
had changed. She perceived physical activity as a way to return to her pre-injury condition. Through the hos- pital
therapeutic recreation program, Gabri- elle went on a day ski trip offered by the National Sports Center for the
Disabled at the Winter Park ski resort. Though her apraxia caused noticeable problems, Gabri- elle was now ready
for referral to the TRCL (Figure 1) whose purpose was to build brid- ges between hospital-based therapeutic recreation treatment and community-based lei- sure programs.
Several factors affected the recreational opportunities the TRCL could offer Gabri- elle. Although Gabrielle's
endurance and so- cial interaction skills were improved in the supportive setting of the hospital, her apraxia and poor
coordination caused her enough emotional stress outside the hospital to make her fearful within her community.
Depres- sion and her marital difficulties remained problematic. In addition, she resumed her substance abuse when
she returned home where it was readily available. Gabrielle indi- cated that, because of her complex physical
impairments, she was afraid that unfamiliar people may not be able to provide appro- priate help. She did not feel
safe in the com- munity. She could not step off a curb or cross a street safely. She preferred participating in activities
with familiar trusted people, such as her mother and the TRCL. To manage her
Therapeutic Recreation Journal
depression, she was advised to stop smoking marijuana and was placed on Pamelor. De- spite the difficulties,
Gabrielle remained mo- tivated to improve herself through participa- tion in recreation. She stated that her goals
were to "wear high heels again, to drive, to enjoy play and to work".
Gabrielle expressed interest in activities that would both maintain or improve physi- cal ability and act as a positive
outlet for stress. In her initial discussion with the TRCL, Gabrielle expressed interest in con- tinuing downhill
skiing, but was frustrated by the complexity of many obstacles such as the cost, transportation, and the need for
physical assistance. The TRCL had devel- oped a five week ski program in cooperation with the National Sports
Center for the Disa- bled. The TRCL helped Gabrielle obtain a scholarship and complete the necessary pa- perwork
to enroll in the program.
With encouragement from her volunteer ski instructor and the TRCL, Gabrielle showed improvement throughout the
les- sons. Gabrielle had rediscovered an activity that was both physically challenging and en- joyable and
corresponded to her self image as daring and fun loving. Her success prompted her to sign up for further sessions.
As a result of the ski program her physical ability, endurance, self-confidence, trust in others, and social interaction
skills appeared improved.
Reduced outpatient treatment. In May of 1993, Gabrielle separated from her husband and moved in with her mother
(Figure 1). At the same time, she was discharged from most of her formal outpatient rehabilitation therapy. Gabrielle
feared that, with less ther- apeutic activity, her physical ability might deteriorate, and she worried that her stress
might further impair her problem-solving ability and weaken her resolve to avoid sub- stance abuse. Gabrielle's
concern prompted her to call the TRCL for information about recreational programs offered through the lo- cal
Parks and Recreation Department. On her own, she had confidently assessed her situation and identified a potentially beneficial action—becoming involved in swimming and fitness programs offered by
her local parks and recreation district. However, she did require the assistance of the TRCL to follow through with
necessary steps for reg- istration and accommodating her physical and cognitive needs.
Gabrielle and the TRCL discussed recre- ational possibilities and reviewed the local Parks and Recreation
Department brochure. She decided on a tennis program and a moun- tain getaway program. Unlike the ski program, Gabrielle completed all the paperwork and signed up for the programs on her own. The tennis program
included five lessons. In the tennis program, Gabrielle tended to com- pare herself with the non-disabled participants. Consequently, she became frustrated. In order to hold her interest and reduce unfa- vorable comparisons with
other students, a volunteer tennis instructor worked with Ga- brielle individually on basic skills. Receiving
individual lessons in a group class made Ga- brielle feel too awkward and disabled to con- tinue the tennis program.
The mountain getaway, which included: hiking, mountain biking, and river rafting, was more successful. Though
she enjoyed the rafting and hiking, Gabrielle benefitted most from the mountain bike portion. She began riding a
tandem bicycle with a pro- gram staff member. The TRCL rode close behind Gabrielle calling out cues to help her
with the physical skills of riding, which were complicated by apraxia, such as pushing on the pedal. With repetition,
she required fewer cues. After three trips, Gabrielle needed only initial cuing from the TRCL at the start of the ride.
However, she continued to require assistance from her tandem partner.
From her mountain bike experience, Ga- brielle had learned to trust a stranger, her tandem partner, to help her with a
difficult new activity. She had begun to make more choices for herself, becoming more open to new activities. Even
more important to Ga- brielle was incorporating her new boyfriend
Fourth Quarter 1995
319
Inpatient
Outpatient
Home Therapy
Vocational Rehabilitation
Present
Physical Gains
wslkino
writing
8 hour endurance
Cognitive Gains
automatic appropriate
purposeful appropriate
Increased speed of thinking
Functional Gains
independent in basic ADLs
computer class
work adjustment training
managing finances
independent bus use
volunteer work
independent living
Emotional Status
rapid improvements
resumes drug use
marital breakup
new relationships ends drug use
fails driving evaluation
Recreation Involvement
ceramics TRCL referral
skiing
tennis biking and camping
dance stained glass
swimming
FIGURE 1. GABRIELLE'S PROGRESS. GABRIELLE'S PARTICIPATION IN REC- REATION PARALLELED
PROGRESS IN OVERALL FUNCTIONING.
into her leisure activities. The TRCL encour- aged Gabrielle's boyfriend to participate in order to learn more about
her abilities and needs for assistance. After learning how he could help Gabrielle, they went mountain bike riding
together. Her reliance on profes- sionals lessened.
Post-discharge. In June of 1993, Gabri- elle was discharged from her remaining ther- apies. As she received less
formal therapy, she looked for activities to further improve her physical ability. She began feeling enough selfconfidence to begin initiating more leisure activity and showing more abil- ity to follow through on tasks. Gabrielle
still became confused or frustrated if the leisure activity had many cognitive demands. She required another person,
the TRCL, to verify correct completion of the preparatory steps.
Gabrielle's apraxia continued to impede her participation in certain leisure activities.
She participated in an integrated ballet class. Like tennis, the ballet class offered opportu- nities for Gabrielle to
compare herself unfa- vorably to other class members. While she did not fear the social interaction with fellow class
members, she was concerned that her impaired motor planning would both an em- barrassment to herself and an
obstruction to the others in the class. For the first time, Gabrielle quit an activity when she became too frustrated
with her progress. However, her difficulties with ballet did not deter her from further leisure activities.
In late 1994, Gabrielle contacted the TRCL about a stained glass class offered by a local community center. Though
she pre- viously felt stained glass was too difficult, her self-confidence was such that she was ready to try an
integrated class. Gabrielle requested help with the complex arrange- ments necessary to enroll in the class as a
320
Therapeutic Recreation Journal
scholarship participant. Since she could not drive (Figure 1), the TRCL put Gabrielle in contact with the correct
transportation agency. Though frustrating, she made the rest of the transportation arrangements her- self. Gabrielle
and the TRCL worked with the scholarship administrator, the instructor of the class, and a volunteer coordinator to
determine what accommodations Gabrielle might need to participate in the class. She began making all these
arrangements by her- self, but, because of the sequencing prob- lems, she was unable to finish without help from the
TRCL. The volunteer coordinator arranged for someone to assist Gabrielle dur- ing the class. Though she still
required some assistance with following through with tasks, she demonstrated improved problem-solving skills.
Summary. Her rehabilitation was a slow process, spanning three years, with some vo- cational and psychological
therapy still con- tinuing. Gabrielle continues to require the reassurance and some assistance from the TRCL before
participating in a program. For a few years she needed minor help with reg- istration procedures or in
communicating her needs for assistance. Even though she has participated in the ski program for three con- secutive
winters, she still called the TRCL to confirm details. Although she was not completely independent in her leisure,
the affirmation and support Gabrielle received from the TRCL with her recreational activi- ties contributed to
Gabrielle's improvement.
Throughout her rehabilitation, Gabrielle sought employment. Together with a com- munity reintegration specialist,
she devel- oped a Plan for Achieving Self Support (PASS) where social security monies would be used to fund
vocational education and occupational therapy. During the process of arranging the PASS plan, Gabrielle ap- peared
to have more self esteem than she had upon her inpatient discharge. The reha- bilitation team attributed her
increased self esteem to her involvement in the positive and productive leisure activity facilitated by
the TRCL. Gabrielle, herself, reported being better able to handle the stress and life changes because of her
increased leisure ac- tivity. She participated in a challenging work adjustment program as a clerk-recep- tionist,
began managing her own finances and mastered her activities of daily living such as complete independence in
grooming and meals. She finally stopped using mari- juana after almost 20 years of heavy use when she realized it
was impeding her prog- ress and might be impairing her performance on pre driving screens.
Gabrielle's self esteem was central to her ability to successfully cope with her injury. Before injury, Gabrielle was
driven to al- ways be active. Her self esteem came from being perceived to be attractive and indepen- dent. After her
injury, she believed others perceived her as less attractive and less capa- ble than she had been before her injury. Gabrielle's drive to be productive now focused on regaining her pre-injury physical abilities. She was motivated in all
her endeavors, by a desire to be as good as she was before injury. Seemingly trivial goals, such as wear- ing high
heels, involved hard work and per- sistence. She approached recreation as a means to bring about physical improvements. Her own enjoyment was less im- portant. As Gabrielle participated in more recreation programs, she gained
both confi- dence and, through repetition, improved physical ability. Gradually, she gained in- trinsic motivation to
participate in leisure ac- tivities. She began to participate in recreation for her own enjoyment. If the activity benefitted her physically, so much the better. Al- though she still is not able to drive, she reached her personal goals of
wearing high heels, true "play" and resumption of work.
Gabrielle's lack of income, transportation and her cognitive, physical and emotional challenges were almost
insurmountable bar- riers to true community involvement (Figure 2). The complex network of support, scholarships and transportation developed by the TRCL had the solutions already available
Fourth Quarter 1995
321
Assistance of TRCL
Unassisted
Gabrielle
T Barriers:
Physical needs, low income, low self esteem, no transportation
Recreation Services
Finances
Transportation
FIGURE 2. GABRIELLE'S PATH TO COMMUNITY RESOURCES. THE TRCL HELPED GABRIELLE WORK
THROUGH THE BARRIERS OF HER DISABILITY, LOW INCOME, LOW SELF ESTEEM, AND LACK OF
TRANSPORTATION TO ES- TABLISHA POSITIVELEISURELIFESTYLE.
and in place for Gabrielle to access. This empowerment approach enabled Gabrielle to initiate the activity and then
safely partici- pate without struggling with secondary is- sues such as how to get to an activity or how to budget for
the costs of a lift ticket. Gradually, Gabrielle assumed responsibility and control of not only her choices in leisure,
but also all the details of participation. Gabri- elle now only checks in with the TRCL for occasional information.
Authors' Comments
In order to achieve a sense of freedom, personal growth, involvement and creativity in life it is vital that a person
have a sense of fulfillment. Within recreation, this requires that the person have a role in decision making and the
development of the activity. A person
can only benefit from making her own deci- sions when she has the skill and knowledge to make such choices.
Through her rehabili- tation program, Gabrielle began regaining important leisure skills. After discharge, Ga- brielle
applied those skills, through assistance of the TRCL, to gain knowledge of commu- nity resources that could meet
her leisure needs. With the knowledge and skills re- quired, Gabrielle functioned more indepen- dently to achieve a
fulfilling leisure lifestyle.
During her formal therapy program, Ga- brielle had progressed through the treatment portion of the therapeutic
recreation contin- uum. Early in her inpatient stay, her therapist initiated activities and persuaded Gabrielle to
participate. Gradually, she showed improved self-direction of activity, but, even upon her final discharge from
outpatient therapy, she
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Therapeutic Recreation Journal
required a therapist to structure and guide her through the activity. With the help of the TRCL, Gabrielle became
involved in pro- grams that, initially, provided similar struc- ture and guidance as that received from her hospital
therapist. Eventually, as Gabrielle gained skill and confidence, she used the TRCL as only an occasionally consulted
re- source. She had assumed responsibility for her own leisure activities. Without the TRCL to provide information
and programs, Gabri- elle would not have been able to progress through the continuum beyond her final dis- charge.
Gabrielle's use of community re- sources, facilitated by the TRCL, was critical to Gabrielle's success in advancing
through the therapeutic process. With continued prac- tice and growing trust in community recre- ation providers,
Gabrielle may one day achieve an independent leisure lifestyle.
By reducing the barriers of the commu- nity and Gabrielle's injury, the TRCL con- tributed to Gabrielle's
improvement. Ini- tially, Gabrielle lacked self-confidence and feared trying unfamiliar activities or working with
unfamiliar people. By providing safe therapeutic interventions and information about established community
programs, the TRCL helped Gabrielle increase her the con- fidence she had in her own abilities. Gabrielle faced the additional barriers of a low income and a lack of transportation. She was unable to drive, unable to
afford taxis, and, when under stress, unable to consistently use the bus system. The TRCL assisted Gabrielle in
arranging for a limited paratransit service at night when she most required help. Fi- nally, the TRCL reduced
community barriers by setting up new programs and educating established program providers to address the needs of
a previously under served popula- tion, allowing Gabrielle to have a full leisure lifestyle.
The TRCL calls on established commu- nity programs to meet the needs of individu- als with disabilities for
supportive, benefi- cial, and safe recreational programs. Without the community programs, Gabrielle may have
easily returned to substance abuse in reaction to stress or boredom. Instead, with this innovative use of a CTRS,
Gabrielle was able to take advantage of the many therapeu- tic benefits of community recreation.
As health care changes, increased net- working between clinically-based and com- munity-based therapeutic
recreation special- ists is critical. Continued cooperation be- tween recreation professionals will increase the positive
opportunities for client partici- pation and inclusion in the community.
Fourth Quarter 1995
323
A Multidisciplinary Approach to Teaching Anger
Coping After Sustaining a Traumatic Brain Injury: A
Case Report
Elizabeth L. Gongora, Alexis McKenney, Caroline Godinez
This case report describes an anger coping program that was used with an individual who sustained a traumatic brain injury as a
result of an automobile accident. A certified therapeutic recreation specialist and a neuro-psychologist implemented the program
to teach coping skills as part of the client's treatment in an outpatient brain injury program. Skills taught throughout the program
included: (a) identifying anger, (b) reacting to anger, (c) recognizing the boiling point, (d) coping with stress and anger, (e)
discussing assertive reactions, (f) modeling assertive behavior, (g) role-playing assertive behavior, and (h) processing feelings. A
review of the program indicated that the participant demonstrated an improved ability to cope with, and respond to, anger as a
result of participating in the anger coping program.
KEY WORDS: Anger, Coping, Therapeutic Recreation, Traumatic Brain Injury
Each year approximately 1.5 million indi- viduals will sustain a traumatic brain injury (TBI) in the United States. Of those,
50,000 die from a TBI and 230,000 are admitted to
hospitals (Centers for Disease Control, 2004). A TBI involves "an insult to the brain, not of a degenerative or congenital nature
but caused by an external physical force, that may proElizabeth L. Gongora is a Certified Therapeutic Recreation Specialist at Miami Jewish Home and Hospital for the Aged. Dr.
Alexis McKenney is Associate Professor of Therapeutic Recreation at Florida International University. Caroline Godinez is a
Certified Therapeutic Recreation Specialist and Coordinator of the Brain Injury Program at Baptist Hospital in Miami, FL. All
correspondence
may be addressed to Alexis McKenney at Florida International University, Miami, FL
Third Quarter 2005 229duce a diminished or altered state of con- sciousness" (Campbell, 2000, p. 19).
An individual who has sustained a TBI may experience either temporary or permanent impairments in cognitive, physical, social,
and/or behavioral functioning (Campbell, 2000). Cognitive impairments experienced by a person who has sustained a TBI may
include: attention, memory, perceptual deficits, disori- entation, mental fatigue, confusion, difficulty making judgments,
planning, and solving problems. In addition, emotional side effects may be experienced, such as agitation, irrita- bility, apathy,
egocentricity, impulsivity, lack of inhibition, depression, denial, withdrawal, and lack of tolerance (Carter, Van Andel & Robb,
1995). Carter et al. suggested that emo- tional and personality changes caused by the trauma to the brain may have more of an
impact on the individual's life than the actual cognitive and physical impairments. For ex- ample, if the individual experiences
difficulty controlling verbal or physical aggression, he or she would likely experience adverse effects such as difficulty
maintaining friendships or professional relationships. Furthermore, a per- son might experience a decrease in ability to
appropriately cope with anger-producing situ- ations as a result of the TBI, thus rendering that person potentially dangerous to his
or herself or other people.
Therapeutic recreation (TR) professionals are in the position of not only helping improve a person's functional abilities, but
assisting in improving that person's life-skills, as well. TR interventions can be designed with the aim of helping individuals who
have sustained TBIs develop anger coping strategies, which in turn could help individuals to learn or relearn the social skills
necessary for success in their personal or professional lives. One such pro- gram is the Anger Coping Program (ACP) that is
offered as part of TR services rendered through outpatient services in a general and rehabilitation hospital in the southeastern
United States. The purpose of this case report is to examine the ACP offered as part of a TR program designed for participants
with TBIs.
Specifically, this case report provides a sum- mary of how one patient progressed through the ACP after suffering a TBI as a
result of an automobile accident.
Theoretical Foundations
Anger is a natural response to a situation in which a person might feel threatened, at risk of being harmed, treated unfairly, or as
though that person's needs or desires are neglected (Reilly, Shopshire, Durazzo, & Campbell, 2002). Anger is often thought of as
having the following three components: thought, bodily reaction and attack (Seligman, 1993). Accord- ing to Seligman, a thought
can be so "discreet" that a person might not be aware of it. When a person's nervous system and muscles prepare for assault, that
person is experiencing a bodily reaction to anger. The attack response is aimed at stopping the cause of the anger and might be
physical or verbal. A well-socialized individ- ual, however, can usually control the attack.
How to cope with anger and channel it properly is not an innate human trait; the development of anger coping strategies must be
learned (Golant & Crane, 1987). This is particularly true for an individual who has sustained a TBI. Feelings of frustration, stress,
and anger are common accompaniments of a TBI (Denmark & Gemeinhardt, 2002), with as many as 36% of individuals with
TBI's de- scribing uncontrollable feelings of anger (Hanks, Temkin, Machamer, & Dikmann, 1999). Injury to the brain can affect
the areas of the brain that regulate emotional control as well as an individual's ability to think, reason, understand, and
communicate (Denmark & Gemeinhardt, 2002). Cognitive-behavioral treatment (CBT) strategies provide one means for helping
a person who has sustained a TBI learn compensatory skills necessary for learn- ing to cope with and channel anger constructively.
In contrast to treatment approaches that center on environmental manipulations, CBT strategies provide an example of an
approach that focuses on training of compensatory
230
Therapeutic Recreation Journal
skills. Mateer and Raskin (1999) suggested that such an approach might include teaching a person " . . . to individually record in
and refer to a memory system or organizer" (p. 254), much like an individual's use of a journal to document his or her thoughts
and feelings that is often used as part of a CBT strategy. Fur- thermore, compensation might include the use of a new or
substitute skill, learning to adapt to a new situation by changing self-expectations, or selecting new means for coping (Mateer &
Raskin). CBT strategies were developed on the premise that thoughts and emotions play important roles in the acquisition and
mainte- nance of behavior (Hart & Morgan, 1993). CBT strategies, such as the ones used in anger coping programs, are
comprised of a combi- nation of two theoretical models: behavioral and cognitive (Hart & Morgan). Whereas the behavioral
model is centered on the tenet that behavior is determined by external events (Good & Brophy, 1990), the cognitive model is
driven by the argument that a person's behavior is determined by how that person cognitively processes the event (Beck, 1995).
CBT strategies are grounded in the argument that cognitions and emotions play a critical role in behavior change (McKenney &
Dattilo, 2000). When learning and applying CBT strat- egies, a facilitator helps a person to identify and examine the validity of
his or her thoughts as a precursor to engaging in a process of changing these thoughts and emotions.
CBT strategies have been found to be ef- fective in the treatment of mental health prob- lems such as depression (Beck, 1995)
and anxiety (Brown, O'Leary, & Barlow, 1993); however, they are more commonly used to treat individuals who have
demonstrated angry and aggressive behavior (Lochman & Curry,
1986; Smith, Siegel, O'Connor, & Thomas, 1994), in particular, children and adolescents. Recently, Medd and Tate (2000)
investigated effects of a CBT strategy on adults with TBIs who have, similarly, demonstrated angry be- havior.
To investigate effects of a CBT program on children identified as aggressive, Lochman
and Curry (1986) compared the effects of two strategies, an anger-coping (AC) program with interpersonal problem-solving
skills and an anger-coping program plus self-instruction (AC-SIT) program, to determine if partici- pants' behaviors could be
influenced by the addition of self-instruction on interpersonal problem-solving skills. Twenty participants, identified as
aggressive (ages 9-11), were as- signed to either the AC program or the AC- SIT program. Both groups engaged in 12 one- hour
sessions designed to help participants identify problems, generate solutions, and practice self-statements. The AC-SIT group also
participated in six self-instruction ses- sions. The authors found an overall trend re- vealing a reduction in off-task passive behavior associated with the AC-SIT group. Compared to 13% in the AC-SIT group, 3% of the boys in the AC group demonstrated a
decrease in passive off task behavior.
Smith and colleagues (1993) examined ef- fects of a CBT intervention (six 30 min ses- sions), the "zipper" strategy, on three
children (ages 10-11) identified as angry and aggres- sive. A multiple baseline design across partic- ipants was used to investigate
effectiveness of the strategy in decreasing noncompliance, blaming, bullying, threatening, verbal assaults, and destruction of
property. Frequency of physical self-cues and correct self-statements displayed during role-play activities was ob- served and
recorded. All three participants demonstrated the ability to learn and apply the skills and exhibited a decrease in aggressive and
angry behaviors as a result of the program.
Although CBT strategies are commonly used to teach children and adolescents with behavior disorders anger coping skills, researchers have found such strategies to be helpful in treating individuals with TBIs (Medd & Tate, 2000). In a study that involved
28 participants (26 males, 2 females), Medd and Tate (2000) evaluated results of an anger- management therapy program (six 1
hr ses- sions). Compared to participants in a control group who did not participate in the program, participants in the treatment
group were
Third Quarter 2005
231
guided through a process that began with learning principles of brain injury and how anger problems can result, to practicing
strat- egies, such as relaxation, self-talk, and time- out procedures. Using the State-Trait Anger Expression Inventory (ST AXI)
(Spielberger, 1988), participants in the treatment group demonstrated improvements from pre-test to post-test and again
two months after complet- ing the program. Just as a person with behav- ioral problems who has not sustained a TBI, a person
who has sustained a TBI might lack skills needed to appropriately channel anger. Strategies for coping with, and appropriately
expressing, anger must be learned. CBT strat- egies provide individuals experiencing diffi- culties coping with anger with a
means for developing such skills. This case report pro- vides a review of how one patient, Roberto, progressed through a CBT
anger coping pro- gram that he began shortly after admission to an outpatient brain injury program.
Participant Information
Roberto was a 21 year old Hispanic male who sustained a TBI as a result of a severe motor vehicle accident. Although Roberto
had no history of receiving mental health services, as an adolescent he spent most of his free time with his friends drinking
alcoholic beverages, using and selling illegal narcotics, and stealing items from other people. Roberto's parents were separated
when he was 15 years of age. After the separation, Roberto's relationship with his father deteriorated. Roberto lived with his
mother, who was a registered nurse, and his younger brother, who was attending high school. According to Roberto, the only
person he trusted was his mother because he felt as though she was the only person who provided him with consistent support.
Despite chal- lenges Roberto confronted in his home life, he maintained a goal of attending college and helping his mother
financially by finding and maintaining part-time employment. It was dur- ing his trip to begin college that Roberto sus- tained
multiple injuries and a TBI as a result of
a motor vehicle accident. After the accident, Roberto was transported in an unconscious state to a hospital where he was
intubated and placed on a ventilator.
After one week in intensive care, Roberto was stabilized and transferred to a hospital in his home community where he was
extubated six days later. Six days after extubation, he was transferred to a center for inpatient reha- bilitation where he remained
for one month. Upon transferring, Roberto was documented as physically having poor proprioception, low endurance, and poor
balance as a result of right side weakness. Similar to before the accident, cognitively, Roberto demonstrated poor in- sight and
difficulty solving problems; how- ever, after the accident, Roberto began to dem- onstrate difficulty handling frustrating and/or
anger provoking situations. Upon returning to live at home, Roberto began therapy (three times per week, for one month) at a
long-term outpatient treatment facility. After that, he en- tered an intensive outpatient brain injury pro- gram (IOBIP). Upon
admission, Roberto was reported to have improved physically; how- ever, cognitively, he continued to demonstrate poor insight
and a low frustration tolerance. Consequently, as part of IOBIP, Roberto was referred to the TR specialist to begin the ACP.
Program Background
The IOBIP assisted Roberto in his transi- tion back into family, work, and community life. Roberto attended outpatient therapy
ses- sions three times a week from 8:30 a.m. to 4:30 p.m. Each day, Roberto participated in highly structured life-skills and
recreation ac- tivities. Roberto received services from a treat- ment team comprised of a certified therapeutic recreation specialist
(CTRS), neuro-psycholo- gist, physical therapist, occupational therapist, and speech therapist. The IOBIP promoted family
involvement through the transition pro- cess by offering members counseling and ed- ucational services. The treatment team
focused on improving Roberto's communication, vo- cational, life, social, and anger coping skills,
232
Therapeutic Recreation Journal
fitness level, and readiness to re-enter the com- munity. Part of Roberto's treatment involved completing
the
ACP ,
which was
co-adminis- tered by the CTRS and neuro-psychologist.
Case Content
The purpose of this case report is to exam- ine the ACP implemented by the CTRS and neuro-psychologist designed specifically
for one participant, Roberto, who had sustained a TBI as a result of a motor vehicle accident. To illustrate how Roberto
progressed through the ACP, the program is presented based on the TR process that was used to organize the delivery of services.
The TR process includes: assessment, planning, implementation, and evaluation.
Assessment
During the assessment phase of the TR process, data were collected, organized, and analyzed so that the CTRS was prepared to
render clinical judgments regarding which TR programs were appropriate for helping Rob- erto meet clinical goals (Austin &
Crawford, 2000). Within 48 hours of admission into the IOBIP ,
Roberto
was
administered
two
assessment tools, the Functional Independence Mea- sureTM (FIMTM) (Guide for the Uniform Data Set for Medical Rehabilitation,
1997), and the Functional Assessment MeasureTM (FAMTM) (Hall, 1997) to score his overall levels func- tioning. Each
member of the treatment team administered components of the assessment relative to their disciplines. For example, the physical
therapist administered sections re- lated to Roberto's physical functioning and the TR specialist administered sections related to
social interaction skills. In addition, a TR de- partment specific leisure assessment was ad- ministered by the CTRS to discern
Roberto's past and present leisure interests. The FIMTM
assessment results are categorized on a seven point rating scale from "complete indepen- dence" to "total assist." Specifically, the
FIMTM measures independent functioning in self-care, transfers, communication, locomotion, and social cognition (COMBI, 2003). Results indicated that Roberto was at a "mod- ified independence" level for social
interac- tion. In particular, results indicated that he interacted appropriately with other people in many situations, yet had a
tendency to lose control of his temper when frustrated. He was observed reacting in a verbally aggressive manner towards his coworkers when he ex- perienced frustration. Roberto's tendency to lose control of his temper was also increas- ingly evident to his
mother.
Similar to the FIMTM, the FAMTM involves a seven point rating scale that is used to categorize patient functioning levels from
"in- dependence" to "complete dependence" (Hall, 1997). The purpose of the FAMTM is to sup- plement the FIMTM so that the
major func- tional areas relevant to brain injuries are ad- dressed (Hall, 1997). Examples of items assessed include swallowing,
community ac- cess, communication, attention and concentra- tion, psychosocial adjustment, reading, adjust- ment to limitations,
and safety judgment. Roberto scored a six on the FAMTM scale, thus indicating that he was functioning at a modi- fied
independence level. Based on results, therapists concluded that Roberto was experi- encing the following deficits: limited
memory, attention, concentration, and decreased read- ing comprehension.
In addition to the FIMTM and FAMTM as- sessments, a leisure assessment specific to TR services was administered to
determine Rob- erto's past and present leisure interests. When Roberto was asked about his leisure interests prior to the
automobile accident he stated that he enjoyed socializing with friends and draw- ing. Roberto emphasized that his cognitive
deficits seemed to have affected his drawing, for he noticed that he did not draw as well as he did prior to the accident. Roberto
reported that he was frustrated because drawing was something he enjoyed doing in his free time. Although he was frustrated,
Roberto hoped to continue drawing in the future.
Third Quarter 2005
233
Planning
During the planning phase of the TR pro- cess, priorities were established, goals were formulated, and strategies and approaches
were determined (Austin & Crawford, 2000). Based on the leisure assessment, the CTRS planned for Roberto to attend the
following programs: (a) computer games and skills, (b) safety education, (c) sports, and (d) commu- nity re-entry. In addition, to
help Roberto ex- plore his previous interest in drawing, he was offered an art program designed specifically for him. Based on a
combination of assess- ment results, the treatment team determined that Roberto would also benefit from the ACP. The ACP was
identified as the program that would assist Roberto in learning how to iden- tify the causes and reasons for his anger, and learn
how to cope with stressors that led to his anger outbursts.
Based on recommendations from the treat- ment team, the CTRS and the neuro-psychol- ogist developed ACP goals relative to
his skills, interests and needs. Established goals included the following: (a) increase awareness of anger and anger provoking
situations, (b) increase awareness of physiological signs of anger escalation, (c) demonstrate an under- standing of anger coping
strategies, and (d) demonstrate ability to apply anger coping strategies in different environments.
To achieve the four predetermined goals, the CTRS and the neuro-psychologist orga- nized and titled eight sessions specifically
for Roberto to assist him in meeting his goals (Table 1). Sessions titles included: (a) identi- fying anger, (b) reacting to anger, (c)
the boiling point, (d) coping with stress and anger, (e) discussing assertive reactions, (f) modeling assertive behavior, (g) roleplaying assertive behavior, and (h) processing feelings.
Implementation
The implementation phase of the TR pro- cess involved the actual delivery of the ACP as outlined during the planning phase. For
Rob- erto, it was determined that he would move
Table 1. Anger Coping Program Sessions
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Session 1: Session 2: Session 3: Session 4: Session 5: Session 6: Session 7: Session 8:
Identifying Anger Reacting to Anger The Boiling Point Coping with Anger Discussing Assertive Reactions Modeling Assertive
Behavior Role-Playing Assertive Behavior Processing Feelings
through a (Three times per week for 45 minutes) de- signed to help him achieve goals established related to his need to develop
anger coping strategies. Five sessions were conducted inde- pendently with Roberto by the CTRS with the neuro-psychologist in
attendance. The neuro- psychologist assisted the CTRS with three ses- sions by participating in modeling and role- play activities.
Each afternoon a session was held; Roberto attended a half hour debriefing session with the neuro-psychologist. These sessions
were designed to reinforce what Rob- erto learned in the morning session and help him prepare for the next ACP session.
Session One: Identifying Anger. During the first session, activities were implemented to assist Roberto in meeting the first goal,
which involved increasing Roberto's awareness of what made him angry. Roberto was asked to define anger, identify stressors he
experienced in his daily life, and categorize his stressors into levels of anger (Table 2). The CTRS discussed how anger is used as
a means of responding to stressors and explained that an- ger is a feeling that might be expressed in the forms of verbal or
physical aggression. Rob- erto was then asked to identify situations that triggered his anger and categorize these situa- tions into
ones that irritated him, made him angry, and/or caused him to "explode" with anger (e.g., curse or behave aggressively) (Ta- ble
2). Roberto identified one stressor during this session. He explained that he experienced
series of eight morning sessions
Table 2. Identified Anger-Producing Situations
Irritates
A Little Irritated by Situation (Accept the Situation)
Mad
Upset (React Verbally)
Explosive
Very Angry (React Physically)
Other people's lack of compassion & consideration
Over stimulation Inability to be flexible with unexpected
changes Other people's lack of awareness of his
diagnosis Lack of involvement and consistency from
father in relationship Multi-tasking and over-stimulation Inability to contribute to daily family activities Lack of understanding
from father in
reference to his diagnosis Brother not helping around the house with
chores Overprotective Mother Lack of commitment and support from Father Anybody driving fast Frustration with trying to
reintegrate into the
community Difficulty driving at night Awareness of deficits as they emerged People not living up to their word Memory
problems Other people behaving irresponsibly
anger when his mother asked him to do some- thing for her when he was busy doing some- thing else.
Session Two: Reacting to Anger. During the second session, Roberto was asked to recall the last time he was angry and describe his feelings, both emotionally and physically, and identify the bodily reactions
produced by the anger. Roberto responded that he had experi- enced an increased heart rate, his muscles tensing up and breathing
quickening, and a cold feeling in his hands and feet. The CTRS used this technique to help Roberto identify his bodily reactions
to anger, thus helping him to achieve the second goal of increasing his awareness of his physiological signs of anger escalation.
The CTRS explained to Roberto that when he experienced an escalation in feelings of anger, bodily reactions would oc- cur that
might help him to become aware of his feelings. The CTRS explained that a bodily reaction is when a person's nervous system
and muscles prepare for an "attack." A reac- tion might occur in one or more ways: (a) physically, (b) verbally, or (c) no attack.
Session Three: The Boiling Point. During the third session, Roberto was asked to com- pare his anger to temperatures measured
on a thermometer. The CTRS explained to Roberto that when situations arise that anger him, his personal thermometer
temperature increases. For this session Roberto was provided with a picture of a thermometer to help him visualize his personal
"boiling point" and to acknowl- edge what triggered his anger at different times throughout the day. It was explained to Roberto
that a boiling point represents the cumulative result of anger producing stressors that occur at any given time. For example,
Roberto identified the anger that he felt as a result of the consequences he experienced af- ter missing the morning bus. In
addition to the anger he experienced after missing the bus, he arrived late to work, causing him to be docu- mented for tardiness.
After having already experienced two stressors that day, Roberto raised his voice at his supervisor after she asked him why he
was late. Ordinarily, being asked such a question would not cause him to react in a verbally aggressive manner. Al- though the
source of his anger was related to incidents that occurred earlier in the day, Rob- erto reached a boiling point after the third
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incident, thus causing him to have an aggres- sive response. During this session, Roberto was able to identify that he ordinarily
needed to experience three stressors before reaching his personal boiling point.
Session Four: Coping with Stress and An- ger. During the fourth session, Roberto was taught how to identify the "fight or flight"
response to anger. Recognizing that coping with stress is related to coping with anger, this session was designed to help Roberto
achieve the third goal of demonstrating an understand- ing of strategies necessary for confronting both emotions. Roberto was
asked to imagine that he was in the woods when he saw a bear that he thought might attack him. The CTRS then presented three
means for coping with the stress of such a confrontation, which included reacting aggressively by trying to injure or kill the bear,
diverting the attention of the bear by tossing food toward the bear, or withdrawing and avoiding further contact with the bear by
running away. The CTRS explained to Rob- erto that the bear might be considered a met- aphor for other stressors or anger
producing situations he might face in life, such as the one he confronted when angered by his supervisor who raised her voice at
him. Roberto ex- plained that he would typically cope with an- ger by reacting aggressively. At this point in the program, Robert
felt that he was ready to explore the possibility of walking away from (flight) an anger or stress provoking situation rather than
responding aggressively (fight).
Session Five: Discussing Assertiveness.
During the fifth session, the CTRS presented Roberto with a fourth means for coping with anger, reacting assertively. The CTRS
ex- plained to Roberto that assertiveness requires a direct and honest approach to expressing feel- ings. When individuals act
assertively they respect the rights of other people and recog- nize the importance of having their own needs and rights respected.
They speak clearly and confidently, and are aware of their ability to make choices in life. These individuals confi- dently express
their needs, opinions, thoughts, ideas, and feelings in most situations, particularly in situations that produce angry feelings. During such situations, assertively verbalizing feelings without becoming
aggressive is a form of channeling anger. Individuals who behave passively, on the other hand, are fear- ful and less apt to
express their feelings. Dur- ing the discussion, Roberto shared with the CTRS that prior to his injury he passively avoided or
ignored threats. After the accident he began reacting with physical and verbal aggression to similar threats. Roberto ex- pressed
that he now realized that he needed to stop and think before he reacted to anger- provoking situations.
Session Six: Modeling Assertive Behavior.
Session six involved the CTRS and the neuro- psychologist modeling ways to appropriately ex- press feelings of anger. This
session was de- signed to prepare Roberto for achieving the fourth and final goal of demonstrating an ability to apply coping
strategies in various environ- ments. For example, the therapists modeled var- ious verbal and physical reactions that Roberto
could use when confronted with a threat. After sustaining the TBI, Roberto had a history of reacting with physical aggression
(e.g. fighting) when experiencing a perceived threat. After ob- serving his behavior modeled by the therapists, Roberto concluded
that he needed to change his behavior. The CTRS asked Roberto to identify alternative means for handling a perceived threat.
Roberto identified walking away as his preferred manner of handling a similar situation. To illustrate, the therapists then
demonstrated how it would appear to leave a potentially threat- ening situation; the CTRS modeled turning and walking away
after the neuro-psychologist called her an unflattering name.
Session Seven: Role-Playing Assertive Be- havior. The last two sessions were similarly designed to help Roberto achieve the final
goal. During the seventh session, the therapists organized and implemented role-play activi- ties that were similar to situations
Roberto had confronted in the past or that he would likely confront in the future. For instance, in one role-play activity the CTRS
played the role of Roberto's mother and asked him to do things
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Therapeutic Recreation Journal
that he would rather not do, such as take out the trash. Before each role-play activity was implemented, Roberto would decide
how he should react to his mother in that particular situation. Other role-play activities involved anger-provoking situations that
Roberto would likely confront at work or in social situations. These activities were designed to help Roberto to communicate his
feelings in an assertive manner.
At the close of the seventh session, the CTRS provided Roberto with a notebook that he would use to document anger-provoking
situations that he confronted each day for the remainder of the ACP and for as long as necessary after the last session. The CTRS
asked Roberto to be prepared to discuss at least one of his entries in the last ACP session. After each entry, Roberto was asked to
re- spond to the following questions: (a) What is one positive result of the confrontational situ- ation?, (b) How did you handle
the confronta- tional situation?, (c) Could you have handled the confrontational situation differently?, (d) How could you have
handled the confronta- tional situation differently?, and (e) What ar- eas that should be addressed in the next anger management
session?
Session Eight: Processing Feelings. Dur- ing the eighth and last session, Roberto dis- cussed an anger-provoking situation that he
had written about in his notebook that in- volved a recent confrontation he had experi- enced with his mother and his brother.
Roberto felt that his brother was not helping with household chores. Roberto expressed to the CTRS that as soon as he felt a
tensing of his muscles, he knew that his anger was escalat- ing. He then let his mother know that he needed time alone to "cool
down." The CTRS told Roberto that he had handled the confron- tation well by using one of the techniques that he learned during
the ACP. The CTRS empha- sized that he could have responded aggres- sively by screaming at his mother, hitting walls, or
throwing things in the house, but he chose to calmly let his mother know he was angry before taking some time to collect his
thoughts. The CTRS reinforced Roberto's de- cision by telling him that she was proud of the way he handled the situation.
Evaluation
The final phase of the TR process, evalua- tion, involved an appraisal of how the partic- ipant responded to the planned
intervention (Austin & Crawford, 2000). An evaluation typically involves a systematic process of gathering and analyzing
information to assess quality, effectiveness, and/or outcomes of an intervention (Peterson & Stumbo, 2000). Rob- erto's progress
through the ACP was assessed through an informal formative evaluation pro- cess; that is, information about how Roberto
responded was collected by the CTRS and the neuro-psychologist on an on-going basis by observing his behavior and asking him
fol- low-up questions to determine whether he achieved each of the pre-established goals. Additional information was also
gathered from staff.
Based on observed improvements in be- haviors and on responses to therapists' spe- cific questions throughout the program, Roberto appeared to respond positively to the ACP. Progress was tracked with the use of documentation in his medical record
specific to observations of Roberto as he participated in the ACP. In particular, Roberto stated that the thermometer provided "a
good way to look at it" because it helped him visualize exactly how many anger-producing or stressful occurrences that he could
tolerate before he had an anger outburst. Further- more, Roberto explained that he understood what was happening to him
physiologically. Roberto explained that when he felt he was approaching his personal boiling point, he would feel his muscles
tensing. During these times, Roberto would get nervous because he knew his next reaction would be to hit a person or an object.
Roberto felt that he needed the visual cues to understand what he was experiencing. This helped him to under- stand how quickly
his anger escalated
Third Quarter 2005
237
throughout the day as he confronted various stressors.
Roberto expressed how the ACP sessions helped him handle difficult situations with- out reacting aggressively. He had begun to
learn how to identify when something was bothering him and express his feelings calmly and appropriately. Furthermore,
Roberto explained that he developed the confidence necessary to apply the ACP tech- niques in situations that he encountered in
his work and home environments. For exam- ple, while working as a volunteer at the hospital in which he received treatment,
Roberto confronted a number of situations that were potential anger triggers. Roberto stated that he would visualize how he was
feeling by thinking of his personal thermom- eter. If he felt that it was rising too high, he would excuse himself long enough to
decide how to calmly handle the situation. Roberto stated that he felt better about himself be- cause he was learning to control his
anger.
The therapists concluded that the ACP program provided Roberto with opportuni- ties to apply learned anger coping tech- niques
and help to raise his self-esteem. According to Roberto, he felt better about himself and more confident because of par- ticipating
in the program. Staff observed that Roberto was dressing better and had a neater appearance than he had demonstrated previously. In addition, Roberto began to social- ize more with other people, eat healthy foods, and monitor his weight. Consequently, Roberto's participation in the ACP program potentially helped him to transition to work and social environments outside
of the hospital setting.
Authors' Comments
A person who has sustained a TBI might experience a dramatic change in personality, strained relationships, loss of employment,
and a perceived inability to participate in his or her favorite leisure activities (Denmark & Ge- meinhardt, 2002). Any or all of
these changes
can result in a person experiencing stress and anger. For this reason, an anger coping pro- gram offered as part of TR services
provides participants with a critical service. Anger cop- ing programs have been found to be helpful because participants learn
new skills and learn to cope with anger provoking situations in a variety of environments (Denmark & Gemein- hardt, 2002).
For many individuals, it is difficult to un- derstand how to appropriately express anger. These individuals often need a trained
profes- sional to help them identify and utilize anger coping strategies. When confronted with an- ger-provoking situations, these
individuals may not know how to react safely and appro- priately. Furthermore, they may not be aware of the pain their loved
ones or their friends are experiencing as a result of their aggressive responses. Roberto was aware of his aggres- sive tendencies
and knew that his behavior was adversely affecting his family and friends. It did not escape Roberto that his personality changed
considerably as a result of the auto- mobile accident. He began to react aggres- sively to things that did not previously pro- voke
such a reaction in him, and he began experiencing increased difficulty recognizing and sharing his feelings about personal situations.
Upon beginning follow-up outpatient treat- ment, Roberto began attending a brain injury support group that he found helpful.
Roberto identified that by participating in the support group and listening to former patients discuss how they confronted angerproducing situa- tions, that he was able to identify additional coping strategies. In addition, Roberto re- ported that by sharing his
experiences, he felt as though he was helping other people who have experienced similarly stressful situations. Roberto
informally offered this information in discussions with the CTRS, thus highlighting the potential of having follow-up ACP sessions. Roberto might have benefited from pro- cessing new information with the CTRS and the neuro-psychologist after
completion of the
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Therapeutic Recreation Journal
ACP with the intention of helping him to assimilate what he was learning in the support group with what he learned while
participating in the ACP. Such sessions could be held one or two times per month.
In addition to the provision of follow-up sessions, another change might involve the introduction of the notebook earlier in the
ACP. Roberto was not provided with a note- book until the second to last session, however he continued to keep a notebook
documenting his reactions to anger-provoking situations while he attended a support group at the hos- pital. According to Mateer
and Raskin (1999), teaching an individual to record thoughts as- sists that individual in learning compensatory skills. Introducing
the idea of recording thoughts into a journal at the onset of the ACP could potentially assist the participant to recall events that he
or she might not have otherwise recalled. This, in turn, would provide both the participant and the therapist with more information about anger triggers and the manner in which he or she responded to various anger producing situations.
Upon completion of the ACP, and while he participated in a support group, Roberto wanted to help other people by volunteering
at the hospital. Through his participation in the ACP, Roberto stated that he learned to identify his physiological reactions to
anger and how to identify and react appropriately to anger-pro- ducing situations and stressors, thus providing him with
confidence and a motivation to help other people. In addition, Roberto acknowl- edged that learning to cope with anger helped
him to experience a sense of control over his life. This sense of control became evident to Roberto as he found that he was
reacting to anger producing situations in an assertive rather than an aggressive manner and applying problem solving techniques
rather than react- ing impulsively. In summary, Roberto devel- oped the confidence necessary to cope with challenges that he
would continue to confront each day.
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A Personal Narrative of Involvement in Post-Traumatic Brain
Injury Rehabilitation: What Can We Learn for Therapeutic
Recreation Practice?
suzanne lawson, Fern M. delamere, and susan l. hutchinson
Abstract
This paper is an autoethnographic exploration of one woman’s illness narrative. It provides an in-depth understanding of her lived
experience of rehabilitation after sustaining a traumatic brain injury and poly-trauma. The narrative confirms the importance of providing
people with self-determined choice as a primary component of rehabilitation. The voice and values of clients are integral to professional
judgment. This narrative supports clients’ personal choice and freedom during the rehabilitation process as a means of increasing their
sense of self-determination and empowerment while improving overall health outcomes.
Today I go past the accident site. They have closed off that service road to Jean Talon where the truck brought me down. .....Lying under
that truck with its two sets of large back wheels advancing; I thought that this is the end. Nothing more, nothing less; clear and simple.
Suzanne Lawson – Journal Entry, September 1, 1998
KEYWORDS: Health Care, Illness Narrative, Personal Narrative, Patient Self-Determination, Traumatic Brain Injury, Therapeutic
Recreation
Suzanne Lawson is a retired nurse and health educator, formerly with McGill University.
Fern Delamere, Ph.D., is an Assistant Professor in Applied Human Sciences at Concordia University.
Susan Hutchinson, Ph.D., is an Associate Professor in the School of Health and Human Performance at Dalhousie University.
236
personal narraTiveIntroduction
Suzanne Lawson wrote an original manu- script early in recovery during full-time rehabil- itation after sustaining a traumatic brain injury
and poly-trauma1. Suzanne also wrote poetry and kept a journal throughout rehabilitation. The current paper is a collaborative research
initiative that began 5 years after Suzanne’s ac- cident. The research process provided a means to autoethnographically reflect on
Suzanne’s original article, journal notes, and poetry writ- ing, as well as interview data collected 4 years later. It interweaves Suzanne’s
narrative with an exploration of other autobiographical and scholarly writings that resonate with her ex- periences. Suzanne’s goal in
providing an ac- count of her journey, and her involvement in documenting, researching, understanding and writing that experience, is to
evoke recogni- tion by health care professionals of the integral role that client self-determination plays in cli- ent care and rehabilitation.
We begin with a description, written by Suzanne, of the personal and professional context of her accident and the experiences that
followed during rehabilitation. Following this description, we discuss how the current research came to be, elaborate on autoethnographic research methods, and explain the relevance of illness narratives as an important form of knowledge dissemination. The remainder of the paper is organized around two themes that represent the collective combina- tion of Suzanne’s original manuscript and the
current research process, followed by a discus- sion, conclusion, and epilogue.
Suzanne’s Story
Fate
When all else fails, slit a throat. To cut, or not to cut? That is the question never pondered. There is no time to consider Whether it is
nobler to draw artificial breath Through blood,
Or simply let be, to die.
And I looked on, Coolly watching from above Apart from, yet still a part of,
This painful, broken, brainless body With its blackened pumpkin head And blinded racoon eyes; Within and yet without simultaneously.
Men play at gods When administering heroic measures. But it is others who must struggle To live with ensuing consequences.
Maybe this is my destiny; But it is a destiny much altered By man and by machine. Do humans or the gods Have any place In such a
destiny?
S.L. July 5, 2001 Written 2 1/2 years, post-accident
Until a few years ago I was working as a nurse and health educator with students at McGill University in Montreal. During my over 20year career as a community health nurse, I have worked with diverse popula- tions—nationally and internationally: babies, children,
adolescents, young single mothers, families-at-risk, battered women, people with AIDS, the elderly, the house-bound and the dying. My
pre-occupation has always been to demystify the medical system, to integrate the clients in their own care, and to share with them the
tools needed for them to have con- trol within the system and over their lives.
My hands have received babies into this world, cleansed wounds, and soothed the pas- sage of the dying. I have worked often with
underprivileged and frequently struggling populations, in the poorest areas of Maine and Montreal. I have taught pre-natal classes and
conducted post-natal groups. I have worked on a Mohawk reservation and with the Cree and Inuit of Northern Quebec. I have spoken on
Northern community radio and at inter- national conferences. I have trained native
1
This was quite a challenge and could not have been achieved without the guidance and support of Gilles, B., orthopedagogue (special education counselor).
Lawson, deLaMere, and hutChinson
237
interpreters about health care and supervised student peer-health education. I have trained village health workers and traditional birth attendants in rural Bangladesh. I have worked in primary health care in war-torn Burundi.
None of these experiences prepared me for my encounter with my own mortality on March 4th, 1998 and my struggle to regain all
aspects of my life since living with a brain in- jury. I suffered my traumatic brain injury and poly-trauma as a result of a bicycle collision
with a heavy truck in a major urban center with a well-equipped trauma hospital. This made available the miracles of modern technology and a highly skilled medical team who saved my life.
The direct impact of my unprotected head on the pavement caused me to lose conscious- ness at the time of the collision. I regained
consciousness trapped under the back double set of wheels of the truck, which dragged me forward for 10 meters destroying the flesh of
my right upper arm. I was completely blind. An emergency tracheotomy was performed upon my arrival at the hospital and I was
artificially ventilated in the intensive care unit for 9 days. My left (dominant) arm was completely pa- ralysed. Blind and unable to speak,
move, or even breathe on my own, I was totally depen- dent upon hospital personnel; however, those around me also sustained my will
to live, fight for consciousness, and recovery:
[after moving from intensive care]
On the floor my room became full of colour - posters, cards and flowers, and the messages of love that they conveyed; such
encouragement to get literally on one’s feet and become functional once more. If it is apparent that one is val- ued, one has to live up to
that evalua- tion. One has to prove oneself worthy of such caring by others. I am convinced that my recovery is due in a major part to the
active support of those around me. The Monday end of day nursing meetings were transferred to my bed- side where I would show off
my newly acquired shaky walking skills. First to the end of the room; then accompanied to the end of the corridor; then to the elevators
at the end of the visit, to re- turn alone. It hurt my poor broken
ribs to laugh, but oh, it felt so good.
(Journal, October, 1998)
I was physically and psychologically trau- matised by this accident. Although I am no longer dependent upon others for my activities of
daily living, this ‘moderate’ brain injury has left me with permanent lesions in the right frontal, parietal, and occipital lobes of my brain,
along with a small lesion in the right cau- date nucleus. Consequently, I have left hemi- anopsia (blindness of the left side of each eye)
and an anomaly (blind spot) in my right eye. I have problems with perceptual integration, sometimes not recognizing faces even of those
close to me. I become dizzy when I change my head position. My left arm and hand lack co- ordination and dexterity due to hemiparesis. As I used to be left handed, I have needed to change dominance and learn to write with my right hand. My hand-eye coordination is poor. Reading and writing are laborious. My emo- tions are labile and unpredictable. I become stressed and panic easily. I
have lost confidence in my abilities and in myself. It takes little to irritate me. I have difficulty with higher orga- nization. My
concentration is limited. I fatigue with mental and/or visual effort.
As my poem suggests, such was my state at the time of rehabilitation:
Brain Damage
Through the eye of the needle Backwards and forwards I untangle Then rejoin
The broken threads Of my torn remnants.
Thus, I reweave the fabric Of my battered being.
But the texture is changing, The same, yet so different – A work in progress!
The shape is distorted The material unstable, Quicksilver—elusive Forever breaking, reforming Constantly registering heat and cold.
238
personal narraTive
Along the line of the fault The earth quakes The tides change And foul black water Flows from the cracks.
So it is with the brain.
S.L Nov. 25, 2000
Hemi-anopsia, hemi-negligence, and he- mi-paresis made the mechanics of reading and writing difficult. Cognitively I discovered that
even when I read an article more than once I was unable to pick out what was important in reference to my thesis of client involvement.
‘Organic’ fatigue augmented my trouble with concentration. Added to my personal chal- lenge was the fact that my neuro-psychologist
at the rehabilitation center, although validat- ing the quality of my work, felt that I should be researching and writing on a subject in
which I had less personal and emotional involvement. Then, as now, I believe writing about my own trauma and rehabilitation to be
appropriate and beneficial for these very same reasons.
I met with a writing specialist weekly for help with organization and breakdown of tasks. The librarian at the rehabilitation center did the
literature search for me. I also received articles from a friend. When I finally wrote, a friend of mine typed the manuscript. Two other
friends in turn helped with the French translation so that the article could be shared with the center’s rehabilitation practitioners to whom
I presented my reflections at the end of my rehabilitation (in June of 2000). Most re- cently, I have also had the opportunity to share my
story at two therapeutic recreation confer- ences (Delamere & Lawson, 2006; Lawson & Delamere, 2006).
Meeting Suzanne
This section explains how the other two authors met and consequently collaborated with Suzanne in the writing of this paper. Each coauthor presents their first-person rec- ollection of these events.
I (Fern Delamere) met Suzanne socially at a community dog park during the summer of 2004. We would occasionally see each other
while enjoying the company of our canine companions. As with many hidden disabili- ties, it was not apparent to me that Suzanne
Lawson, deLaMere, and hutChinson
had a brain injury. It was through circumstance that I discovered Suzanne’s experience with trauma. A bike courier race was being held
near the dog park. A former bike courier who sustained major injuries entered the park us- ing his electric wheelchair, accompanied by
his companion dog. I first became aware of Suzanne’s accident and subsequent traumatic brain injury through our conversation and their
open sharing of trauma experiences. After he left, our subsequent conversation led to Su- zanne stating her desire to share her experience
publicly. I validated the importance of sharing this information and suggested we collaborate on research together with the goal of
publish- ing her personal narrative so others might also benefit. As an academic, following 8 years as a Recreation Therapist, I
recognized the value Suzanne’s story has in helping advance current understandings of client-centred health care. I also felt it would be
useful to include Susan Hutchinson in the development of this paper. Here is how Susan explains her interest in this collaborative work.
My research has focused on how people cope with and adjust to living with a life alter- ing injury or illness, and the role that leisure
(personally meaningful and enjoyable activity/ experiences in the free time context) may play in coping and adjustment (Hutchinson,
Loy, Kleiber, & Datillo, 2002). Because of this re- search interest, Fern asked me to join her and Suzanne and on this project. However,
it was not until almost a year later that I met Su- zanne, just before she and Fern were going to share Suzanne’s story at a large national
con- ference. Afterwards, conference attendees, the majority of whom were therapeutic recreation practitioners, expressed how
overwhelmed and appreciative they were to hear Suzanne’s story. This reinforced to me how important it is for practitioners to reflect on
what it means to ex- perience a life-altering injury, and the tangible implications of this for client-centred care.
Illness Experiences and Autoethnography
In this next section we describe the re- search context for Suzanne’s personal nar- rative. Numerous theoretical and method- ological
approaches have been used to explore people’s lived experiences. Proponents of nar- rative theory have long argued that the stories
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that people tell themselves and each other are not just reflections of experience—they are constitutive of experience (Bruner, 1986;
Gergen & Gergen, 1997; Polkinghorne, 1991). What people understand about their experi- ences become their stories and personal narratives. By extension, stories of experiences of illness or injury are also viewed as the means by which people can make sense of the
disrup- tions they experience to their sense of self and life following a traumatic injury (Brody, 1997; Bury, 1982; Kleinman, 1988;
Mattingly & Gar- ro, 2000; Williams, 1984). Stories are said to help people affirm valued aspects of who they were in the past, and at the
same time recon- cile their present situation. For proponents of client-centred care, narratives are the lens to understanding clients’
experiences of suffer- ing and triumph in the context of illness or injury: “To restore the human subject at the center—the suffering,
afflicted, fighting, hu- man subject—we must deepen a case history to a narrative or tale; only then do we have a ‘who’ as well as a
‘what,’ a real person, a pa- tient” (Sacks, 1987, viii).
Autoethnography has been utilized as a research methodology in the social sciences to explore and understand personal experi- ence.
Ellis and Bochner (2000) described au- toethnography as “an autobiographical genre of writing and research that displays multiple layers
of consciousness, connecting the per- sonal to the cultural” (p. 739). The expression of personal experience and emotion are the essence
of autoethnographic writing (Ellis & Bochner). Autoethnography provides a pro- cess whereby the social and cultural features of
personal experience, in this case the experi- ence of traumatic brain injury rehabilitation, can be highlighted in a reflexive way. Reflexive
ethnographies often study the researcher’s ex- perience of doing the research in conjunction with the personal narrative being explored.
As such, the goal is to highlight the personal ex- perience of Suzanne during rehabilitation, but to also acknowledge the collective
narrative of this project.
The Research Process
An autoethnographic method was used in this research. This article is based on Suzanne Lawson’s illness narrative. As noted earlier,
Suzanne wrote an original manuscript early in
recovery during full-time rehabilitation. She also wrote poetry and kept a journal throughout this period. The original manuscript forms
the foundation for this article. Suzanne’s poetry, journal writing, and additional interviews (conducted 4 years post accident) were used
as data. They were collectively analysed and interwoven into this paper as a means of sup- porting key points that Suzanne made in her
original manuscript.
The research process began in March 2005, when Suzanne and Fern collectively wrote an ethics proposal and submitted it to the Human
Research Ethics Committee of a large Quebec University. After approval for the project was granted, unstructured informal interviews
be- tween Fern and Suzanne were conducted in July and August, 2005, and transcribed over the winter of 2006. The interviews focused
on Suzanne’s experience as a client and her use of various writing and leisure-based activities as a means of recovery. In addition,
Suzanne shared with her co-authors (Fern and Susan) her jour- nals (seven hand-written books filled with al- most daily entries) and also
the poetry she had written during rehabilitation. Here is an exam- ple quote from one interview, in which Suzanne was talking about the
process and meaning of writing poetry during this time:
SL: I don’t know, but I think you’ve read some of my poetry? Some of it is pretty black, but just writing it gets you through, and I still
write a journal. (Interview, 2005)
The descriptions Suzanne shared during the interview process were studied closely for content that representatively supported Suzanne’s personal narrative and poems written during her rehabilitation process.
The process began with Fern reading Su- zanne’s poems and narratives and making note of thematic materials that helped explain Suzanne’s experience. In addition to Suzanne’s prior reading of the brain injury and health literature, other scholarly work guided our analysis of Suzanne’s writing as to the important salient points of her narrative (e.g., literature about client-centred care; illness
experience). Fern also systematically analyzed transcripts from a series of interviews that she had with Suzanne. The coding of data
proceeded in- ductively. Inductive coding involved brack- eting segments relevant to understanding
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Suzanne’s experience of rehabilitation, and her everyday life. Through repeated meetings we shared input on our findings, stating
rationale as to why one interpretation or narrative fit well over other possible interpretations or nar- ratives. Suzanne, having lived this
experience, was best positioned to make final determina- tions about which quotes, poems, and journal entries best represented and
supported what she was trying to say. It was important to her co-authors that Suzanne played an integral role in the academic process and
that she made the final decision about all narratives used. This ensured that her narrative was enhanced and her voice strong through the
paper.
Richardson (2000) outlined five criteria to evaluate the quality and rigor of autoethno- graphic manuscripts. After completing the
processes described above, we employed these criteria to assess the “trustworthiness” of the co-constructed autoethnographic account
represented here. These criteria included: 1) Substantive contribution - Does the writing sub- stantively contribute to our understanding
of social life?; 2) The aesthetic merit of the writing - Does the paper succeed aesthetically and is it artistically shaped, satisfactorily
complex in its writing, and not boring?; 3) Reflexivity - Did the author/s demonstrate how they came to write the text and how has the
author’s subjectivity been both the producer and production of the text?; 4) Impact of text - Does the text move me emotionally and/or
intellectually? Has it gen- erated new questions for me or moved me to action in some way?; and 5) Expression of reality - Is the text a
representative embodiment of a lived experience? The following text inten- tionally attends to these criteria as a guideline for framing
Suzanne’s story. In doing so, it is hoped that this manuscript makes an academic contribution that is transformative for the reader and
health care professional.
Major Themes of Research: Defining Experiences in Rehabilitation
As we went back and forth between the various sources of data and our respective in- terpretations of what were the important sto- ries to
tell, Suzanne identified two “points” that defined what she believed was important for health care professionals to hear and under- stand
in relation to her experience. First is the importance of continuity of self in the face of
life-altering injury. Second is the importance of client-centred care and the meaningful in- clusion of clients in the decision-making aspects of their care and, therefore, their lives. In Suzanne’s experiences, there was a disjuncture between the client-centred theory
espoused in her rehabilitation centre and her lived expe- riences. These two themes are communicated through representative poems,
excerpts from Suzanne’s journals, the narrative she wrote during her rehabilitation, and the interviews.
The Importance of Continuity of Self in the Face of Life-Altering Injury
A narrative of illness and chronic dis- ability, such as Suzanne’s, is a salient represen- tation of what Frank (1993) described as the
“rhetoric of self-change.” Autobiographical ac- counts of illness shed light on the disruption in self-hood and identity, but also illuminate
the continuity of life. Suzanne’s struggle for this continuity and reconstruction of self-hood is an important part of her narrative. Essential
to this is how Suzanne’s narrative informs health care practitioners how to best help clients dur- ing rehabilitation and beyond.
The following is a continuation of Su- zanne’s original manuscript infused with our analysis of her data. The opening words repre- sent
Suzanne’s accidental “life event” (Frank, 1993), and her difficulties with shifting self- identity, whereas her prose represents her desire
for continuity of life. The analysis and added scholarly references, interwoven with the original manuscript’s narrative, affirm and
reinforce Suzanne’s experience.
Suzanne’s accidental “life event”. My acci- dent was certainly a life event, and adjusting with the associated changes was very challenging. Because of the suddenness of the trauma, and the seeming change in the essence of self from one day to the next, it was very
difficult to grasp the reality of the situation--a reality which was forever changing, at a time when my brain had a hard time adapting to
any change. I had become more rigid at a time when I needed to be more flexible. I had be- come less adaptable at a time when I needed
to adapt to all the different personalities of the various professionals involved in my care and my rehabilitation; and, most basically, I had
to adapt to my diminished self. I was frightened, anxious, and angry. I could not grasp the realLawson, deLaMere, and hutChinson
241
ity of the present nor envision anything for the future.
Survival—for M.G.
Life compounds That is true. But when one survives Against all odds, It is not merely to wither.
My orchid died; Neglect post trauma. Yet I guard it still As I myself cling to life Despite the little that I do.
Our challenge, Dear doktor, Is to discover How to use My near death, My fractured vision, My splintered brain For benefit
In this, our world.
Dead orchid—to garbage; Live woman—to living!
S.L. Nov. 30, 2000
When I reached the tertiary stage of re- habilitation—integration into the community, with an emphasis on work—I felt that who I was as
a person was becoming engulfed by a medical system that seemed ignorant of what it meant to be a person who had experienced a life
altering injury. Here is what I wrote in one journal entry, approximately 5 months after my injury:
I feel that I am losing my identity to a system which saved my life and thus seems to assume that it has a right to my soul; a system made
up of well meaning people who, through their professional arrogance, feel that they can control the path of their client’s progress; that
they understand their client’s strengths and weaknesses from their few hours of professional evaluation, and that with their professional
status and control of the purse strings they can impose their
values and dictate the life course of their client who becomes a passive patient even if no longer hooked up to the fancy lifesaving
equipment of the intensive care unit. (Journal, Aug. 15, 1998)
It seemed that I had taken a more active role in my treatment plan in intensive care on a respirator than in a program that boasted a
theoretical goal of client autonomy. Ironically, I felt that I was treated more as an individual in intensive care, where I was continually
con- sulted despite my severe limitations, than at my tertiary rehabilitation centre where I felt I was treated as just another ‘brain injury’.
During any intervention, one appre- ciates people introducing themselves when they approach—especially when one cannot see, one
appreciates the timbre of voice and the quality of touch. Fear of the unknown and helplessness are terrifying, yet strangely these fears are
easily quelled by information, how- ever bad. When one is told how one can actively contribute to a procedure, one immediately feels
better, less help- less, less passive, however minimal one’s contribution is in concrete terms. (Journal, September 18, 1998)
Part of what exacerbated my profound sense of loss of self was the loss of my role as a valued member of the health care team. For
myself, I needed to find meaning in my situa- tion and I needed to be heard by the health care professionals. In living with a traumatic
brain injury, this proves particularly difficult when the nature of the injury decreases the ability to concentrate and formulate ideas. When
one is easily fatigued and emotionally labile it is hard to trust oneself, let alone establish credibility with one’s experienced rehabilitation
team. In my own case, with the aid of critical insight from my neuropsychologist and the active sup- port of my rehabilitation team, I was
able to use my experiences of negative interactions and lack of control to constructive benefit in redeveloping my own strengths, selfcontrol, and confidence.
A fundamental part of how I defined my- self was associated with my previous work as a health care professional. I defined myself—and
my sense of competence and compassion—in this role. As noted earlier, before my accident,
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personal narraTive
working as a community health nurse, my pri- ority over many years had been to involve my clients in their care, to the maximum degree
that they were willing and able. I saw my job as listening to their needs and concerns, shar- ing knowledge, tools and expertise with
them, pointing out their rights, and demystifying the medical system. Together we would work out and decide upon a plan of action that
made sense for them. I saw myself as a resource per- son rather than someone who could tell others what to do and how to live their
lives. Knowl- edge is power, and sharing whatever knowl- edge one has with others gives them a sense of power and control over their
lives. As a health care professional I learned from the popula- tions and individuals with whom I worked and I made use of this
knowledge with other clients. Hopefully, I gave them some tools that allowed them to take control of their own health by using available
resources and being as autonomous as possible.
I have attempted to demystify the sys- tem, to share with my clients whatever knowledge and skills that I possess and to help them
develop ways by which to have more control over their health and their lives - even if their way is not my way! I have no right to impose
my val- ues upon others just because as a health care professional I am in a position of power. (Journal, August 15, 1998)
These basic beliefs influenced how I felt as a patient in rehabilitation process.
The Disjuncture Between Theoretical Beliefs and Suzanne’s Reality of Client- Centred Care
When I arrived at the L.B. Rehabilita- tion Center, 5 months after my accident, I was shocked and angry to find that well-meaning
professionals planned to set my goals and that I was expected to passively adjust to their sys- tem. I did need their expertise, and
although I received much practical help for which I am truly grateful, I felt totally invalidated as an individual. Decisions were made for
me, not by me. It seemed to be assumed that the pro- fessional staff ‘knew’ what was ‘best’ for me. The system became more important
than the individual.
What to do with the rest of one’s life fol- lowing a head injury. It is humiliating to be victim to the judgments of young professionals
who are secure that they know how another should live, should work, what tires them, what is difficult, what is dangerous. I feel that I
am rendered totally impotent. Decisions are made by others—I am incidental. (Journal, August 24th, 1998)
For example, when I attended L.B. Re- habilitation Center, one staff member could promote or refuse a service such as physical fit- ness
and neuromotor training, even if it had been part of my treatment plan at the previ- ous rehabilitation centre. It was assumed that home
visits would be wanted (because the physical effort would be less for me if I did not have to transport myself there), without first
verifying with me, and without acknowledg- ing the fact that the only part of my body not harmed by the accident was my legs. Physical
activity was the only thing that did not aug- ment my tiredness and that made me feel “nor- mal.” Yet this fact seemed irrelevant to those
“in charge” of me and my treatment plan.
S.L.: Well, there was definitely one big thing—they changed my physical re- hab plan from one facility to the next. They would not let
me go to the gym at the second rehab centre that I went to, even though I had been doing this at my previous rehab. They said I couldn’t
go to the gym and I was in full-time re- hab???!!! (Interview, July 11, 2005)
It was also assumed that I would not wish to be present when the team discussed their goals for me with the automobile insurance agent.
I felt like I was an unwanted spoke in- terfering with the smooth running of the wheel of rehabilitation.
I acknowledge that many of those feelings were fuelled by a conflict of personalities and by my own discomfort at being in a position of
weakness and dependence upon the system. Later I was given a copy of the Code of Ethics of the Rehabilitation Center that placed the
client at the centre of her rehabilitation plan. From my experience, there was something mis- sing between the theory and the practice. I
found with time that the more that I insisted
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upon being involved in every aspect of my reha- bilitation plan the greater became my credibility with the rehabilitation team. However,
when the members of this team changed, it was necessary to reassert my demands for active involvement.
Throughout the entire process there seemed to be a general assumption by health and social service personnel that clients must learn to
accept their limitations.
Seven months have now passed since the accident. Seven long months, seven short months—an eternity and no time at all. I cannot
accept my disabilities. I feel that if I work hard enough, then I shall overcome them. (Journal, October 5th, 1998)
Research has shown that those clients who refused to accept their situation and who kept searching for options achieve increased control
over their lives (Lord & Farlow, 1990). Lord and Farlow observed that health care workers tend to see their clients in terms of their
problems, which makes it difficult for cli- ents to break free of the system’s definition of them. Lord and Farlow’s observations resonated with my own experiences. They noted that health and social service workers rarely realise the deep dependency fostered by the system
and its resulting negative impact upon clients, who become passive victims. I personally felt as powerless in the system as I had felt
when I was literally trapped under the rotating wheels of the truck—even after years of experience demystifying the system and helping
my own clients take control of their own lives.
Discussion
At the time of her original search of the traumatic brain injury literature, Suzanne found many articles discussing clients’ lack of
motivation, but none examining client’s involvement in their rehabilitation plan. Su- zanne discovered, however, that this was not the
case in the health promotion literature. She also theorized that the literature from oth- er disciplines has pertinent application to posttraumatic brain injury rehabilitation. In fact, health psychology and sociology literature re- lated to empowerment, patient self-determination, and illness narratives reinforce Suzanne’s experience of living with traumatic brain in- jury. Our observations are relevant for
multiple
health and rehabilitation settings and contexts, although we have suggested specific implica- tions for therapeutic recreation practice.
Empowerment and Patient Self- Determination
Much of the emphasis in the health psychology literature is directed towards the popularized concept of “empowerment,” i.e., clients
feeling and objectively having personal power within their present situation and, by extrapolation, over their lives (Rissel, Perry, &
Finnegan, 1996; Zimmerman, Israel, Schulz, & Checkoway, 1992; Zimmerman, 1995; Zim- merman & Rappoport, 1988; Zimmerman &
Warschausky, 1998). The concept of empow- erment “integrates perceptions of personal control, participation with others to achieve
goals, and a critical awareness of the factors that hinder or enhance one’s efforts to exert control in one’s life” (Zimmerman & Warschausky, p. 4). Empowerment theory is based on the belief that empowerment is ecologically embedded (Perkins & Zimmerman, 1995).
That is, empowerment is influenced by the in- teractions between individual characteristics and features of social settings and the broader
socio-political context in which these actions and interactions occur.
Although the concept of empowerment has long been theoretically associated with rehabilitation services (Zimmerman & Rap- poport,
1988; Zimmerman & Warschausky, 1998) there has been less attention to how patients in a medically-oriented rehabilita- tion context
can gain power in this context, or be empowered by other health care profes- sionals. We suggest that in order for clients to have control
over their lives, even when all aspects of their lives have been disrupted by injury, they need meaningful opportunities to experience
choice and make decisions if they are to be empowered as part of the rehabilita- tion process. In Suzanne’s narrative, this is accomplished by involving clients in their plan of treatment—not just in theoretical principle, but instead in actual practice. Rehabilitation,
therefore, becomes a collaborative endeavour that fosters potential for client empowerment and more positive outcomes.
Because the concepts of recreation and leisure are based on principles of personal choice and self-determination, the facilitation
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of a range of individual or group opportunities for people to make choices and express pref- erences can directly contribute to personal
empowerment. Recreation participation op- portunities are particularly important in a re- habilitation environment, where opportunities
for other choices and decisions are more lim- ited. Opportunities to exercise some choice can help people feel more in control of their
situation which can, in turn, contribute to personal empowerment; however, in order to make informed decisions, clients need access to
information. For some, this may mean learn- ing about therapeutic recreation and the ways it can contribute to one’s rehabilitation goals;
for others it may mean being fully informed of the opportunities for recreation that are avail- able to them within their room,
rehabilitation hospital, or surrounding area.
Curtis (1998), a vocational rehabilitation counsellor, suggested that rehabilitation should incorporate values of self-control, independence, self-determination, self-reliance, free- dom, responsibility and self-actualisation—in other words, empowerment. Curtis sees em-
powerment as the ability to act on choice; however, one has no ability to act upon choice until these choices are known. From Suzanne’s
perspective, as a patient in a rehabilitation centre, one often has no idea as to the range of choices for that are available. This leads to
feelings of impotence and insecurity.
Such feelings are similar to those voiced by the mothers of the chronically ill children in a study by Gibson (1995) of their process of
empowerment. As with Suzanne, the process for these women to move from being recipi- ents of the system to participants within the
system involved discovering reality; a period of critical reflection, followed by taking charge and holding on. Like Suzanne, the women
in this study needed information and they need- ed to be heard. They needed to vent feelings rather than to be evaluated and reassured.
Also similar to Suzanne, the mother’s uncertainty led to a quest for information and empower- ment through knowledge. Developing and
employing knowledge led to the mother’s com- petence and confidence to make their voices heard by those in power. Similar to
Suzanne’s case, they were no longer subordinate to the health care system, but started to interact ef- fectively with it.
Client-Centred Practices in Health Care
Although there has been a recent theor- etical movement towards client-centred care, the responsibility for initiating and directing the
therapeutic relationship remains with the health care professional (Lindsey & Hartrick, 1996). From Suzanne’s experience, previously as
a provider and then as a recipient of services, both client and practitioner tend to tacitly fall into the habitual roles of the traditional medical model—even if intellectually critical of it. Often, both client and professional want the professional to have all the answers and to be
able to heal the injury.
Lindsey and Hartrick (1996) argued that the power to define health needs and problems belongs to those experiencing them. They
recommended a shift from the traditional ‘top- down’ model where services are provided to passive recipients, to a ‘bottom-up’ approach
where the client-expert engages in a synergis- tic process with the health care professional. It is difficult, however, for professionals to
give up a controlling role in a paternalistic system where clients’ dependency benefits the person- nel (Sakalys, 2003). In addition, it is
difficult for a client who needs services not to feel at the mercy of the service provider. While med- ical expertise and guidance is both
indispens- able and often reassuring it can also be over- whelming to the patient and intensify one’s sense of alienation.
A client-centered approach operates from a self-determined perspective whereby client’s perspectives and goals are the primary directive for treatment as opposed to goals deter- mined only by the medical team (DeHope & Finegan, 1999). A client-centered approach
involves sharing information, negotiating care, and giving each individual the tools necessary to feel healthy within the constraints of
illness or disability. Empowerment within the context of rehabilitation enables the client to be a par- ticipatory member of a
multidisciplinary team rather than a mere recipient of interventions by that team. As it relates to therapeutic re- creation practice, a clientcentered approach is reflected in all aspects of the treatment process, from assessment to goal-setting and making decisions about leisurebased projects or activ- ities that will be utilized to accomplish goals. It also implies that the client has a right to refuse
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participation in any aspect of therapeutic re- creation treatment or programming.
Several general principles that facilitate empowerment can be applied to clients living with brain injury (DeHope & Finegan, 1999; Lord
& Farlow, 1990; Sakalys, 2003). First, clients must be able to identify their problems and plan solutions in consultation with health- care
professionals but based on the client’s own experience. Second, workers need to listen to clients and to believe in their capabilities. In
cases of post-traumatic brain injury this is ex- tremely important, as one often has difficulty knowing and believing in one’s own capabilities. Third, people need a sense of being val- ued in order to participate and to take respon- sibility. The process of intervention, not just
the outcome, is important in order for clients to feel in control, which in turn decreases their level of stress, and gives them the freedom
to make decisions - having a positive impact on their lives. All these principles are easily ac- commodated in a therapeutic recreation
pro- gram that emphasizes client strengths and interests in the assessment, goal-setting, and treatment process.
As a patient or client (‘’politically cor- rect’’ semantics do not change one’s actual pos- ition in the system) one feels very vulnerable; the
caregiver, who plans the intervention, is in the position of power in the system (Krouse & Roberts, 1989; Roberts & Krouse, 1988). From
Suzanne’s perspective as a client, one feels helpless and thus one has a tendency to always try to please one’s practitioners. What can be
done to shift this balance of power? In their examination of the active negotiation process in nurse/client relationships, Krouse and Roberts found that the client’s participation is in- fluenced by the nurses’ (health care profession- als’) behaviour. They noted that rather than
the traditional attitude where the professional dominates, an equalisation of the client/nurse relationship must occur in order to return
con- trol to the client and thus decrease the client’s feelings of helplessness.
The three levels of dependence/independ- ence in the nurse/client relationship delineat- ed by Orem (1985) also apply well to those
living with traumatic brain injury. The first level, ‘’wholly compensatory,’’ as in emergency, life threatening and intensive care
situations, defines a client totally dependent upon professionals. The second, ‘’partially compensatory,’’ calls for guidance and co-operation; and the third, ‘’supportive-educative,’’ requires
mutual participation and places increased respon- sibility for care in the control of the client. As Krouse and Roberts (1989) pointed out,
professional behaviour influences this process and, for interpersonal, cultural and social rea- sons, not every provider and client can work
together.
Practitioner values, while somewhat elu- sive, must be recognized as unwittingly influ- encing intervention and understandably can- not
be kept out of the therapeutic relationship (Curtis, 1988). Clients, however, need to be able to voice their desires and to set goals based
on their own values rather than upon those of the worker. Responsible professionals need to share their ‘educated’ views and opinions
with their clients, and at the same time help them recognise their own values and avoid incorpo- rating the professional’s values as their
own. As it relates to therapeutic recreation prac- tice, Carter, Van Andel and Robb (2003) sug- gested that, in order for therapeutic
recreation practitioners to establish effective therapeutic alliances with their clients, they need to be self-aware of their motives or needs
for being a helper, as well as being aware of their own per- sonal values and biases. Hutchinson (in press) noted that that there is a
greater chance for the therapeutic recreation process to result in posi- tive change when practitioners intentionally try to define and frame
their work with clients in ways that are consistent with clients’ world- views and values. This includes understanding clients’ views of
themselves, leisure, and reha- bilitation.
As Curtis (1988) pointed out, the thera- peutic relationship must be based on integrity and trust, recognizing and respecting individuality. From Suzanne’s experience as a client living with a brain injury, it was very important for her trust and security to know some of
the values of her therapeutic team, whether or not they correspond with her own. The willingness of the practitioners working with
Suzanne to share of themselves allowed her to re-establish her own individuality within the rehabilita- tion process. For rehabilitation to
be effective, clients must be involved in decision-making, and their right to make life choices must be honoured. When workers
differentiate their
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personal values from those of the client, they give the client the opportunity to re-establish and explore their own values and to make
their own decisions upon which they can act. Understanding the capacity of values to influ- ence clients can increase the effectiveness of
interventions and decrease the risk of hidden persuasion. From Suzanne’s experiences, the more she knew about members of her
rehabili- tation team, even in terms of their limitations, the more secure she felt in the relationship.
Illness Narratives as an Integral Part of the Healing Process
What does it mean to live with ongoing limitations associated with a life-altering in- jury? Lindsey (1996) developed the concept of
“health within illness” to suggest that, for cli- ents to gain self-knowledge and to feel in con- trol, irrespective of their medical condition,
emphasis needs to be directed to the health- illness experience of the individual rather than to that of their pathology. From the
perspective of the care provider, actively listening to the client’s experience can lead to increased client awareness, empowering the
client to make choices, then to act upon these choices—own- ing and taking responsibility for them. Lindsey concluded that to promote
health effectively, within the context of chronic illness/disabil- ity, a collaborative relationship is needed; the client then becomes a
partner with the health care professional, who takes on the role of fa- cilitator and resource person.
The other side of an illness experience is helping clients to understand and explore how their past and present are both part of shaping
their future, even in the context of a life al- tering injury. Suzanne’s journal writing became a way to both rediscover and reclaim
glimpses of her self during the rehabilitation process. Suzanne’s experiences of journaling and poetry writing throughout the
rehabilitation process supports the therapeutic value of writing ill- ness narratives (Sakalys, 2003). Therapeutic recreation practitioners
can facilitate and sup- port self exploration and personal reflection in a myriad of ways, from ensuring clients have access to supplies
(e.g., painting or writing sup- plies, adaptive equipment), providing skills training (e.g., incorporating different forms of poetry or art,
computer use), and creating
environments for people to feel they have the safety and comfort to explore their own feel- ings and thoughts (e.g., a private space).
However, Suzanne’s experiences also emphasize the importance of reclaiming one’s self through active involvement in decision- making
throughout the rehabilitation process. Clients living with brain injury tend to under- estimate the importance of their own contri- bution
to their rehabilitation; the therapeutic team frequently interprets clients’ hopes as being a defensive denial and lack of awareness of their
present situation (Pössl & Cramon, 1996). These different perspectives often arise because the client’s reference is pre-brain in- jury,
whereas the professional’s reference is just from the time of admission. Pössl and Cramon maintain, however, that the clients’ ‘subjective` perspective regarding treatment and out- come deserves more attention. There is lim- ited data on how brain injury clients describe
their experiences; usually studied are physical activities of daily living along with cognition/ communication tests. Pössl and Cramon
con- clude that it is necessary to listen to clients and to stress their competences rather than their failures.
Suzanne reflected that examining her thoughts and feelings, during a time when she was evolving in her own adaptation to living with a
brain injury, placed her in a unique posi- tion of living her research. At the same time it raises the question as to whether one can, or
should be, “objective” under such circumstanc- es. The whole question of subjectivity/objec- tivity is fascinating, especially as it relates
to illness narratives such as Suzanne’s. While the medical system is changing, it is still predomi- nately based on objectivity and a
traditional medical model approach to health. As Sakalys (2003) aptly states, “by defining health, illness, care, and patienthood in terms
of disease, med- ical metanarratives suppress subjectivity and the uniqueness of the experience, dominating and objectifying the person
who is the patient” (p. 230). Suffice it to say that as human be- ings we are never totally objective in any situ- ation and that we always
see things to a lesser or greater degree from the position of the sum total of our personal, educational, and profes- sional life experience.
Lawson, deLaMere, and hutChinson
247
Conclusion
This co-constructed autoethnography began with Suzanne’s personal desire to aug- ment her cognitive abilities post traumatic brain
injury. She wanted to find out what she could and could not do in terms of concentra- tion and conceptualization. She wanted to see
where her difficulties lay and to hopefully, with professional help, find some ways to overcome them. Her writing also served as a link
between her past experiences as a health care provider and her present experiences as a health care consumer; however, it evolved to
become a ve- hicle for communicating about the importance of client-centred care in post-traumatic brain injury rehabilitation and, more
generally, user empowerment within the health care system.
Although Suzanne held on to values of personal empowerment against all odds dur- ing the rehabilitation process, she also reflects here,
in this conclusion, on how the research process affirmed her beliefs: Finding support for my experiences in the general literature on
health, health promotion, and rehabilita- tion increased my confidence in my new role as a client—as health care professionals we
receive years of training; as a client follow- ing a trauma we receive none. All people are unique; whether increased involvement leads to
increased motivation and empowerment for all of us living with brain injury remains to be seen. Being a health care worker prior to my
accident makes involvement in my rehabilita- tion a natural continuation of my way of life. What helps others become more involved in
their own rehabilitation and if this involve- ment, as I would contest, is something that motivates and empowers, requires further investigation.
Lament
Out of the biting chill of winter morn air The greasy spoon waitress nurtures with care. Oh, but that those professionals of
rehabilitation Would forget about paltry punitive
correction. Rather than wanting a social norm to
recover, They could listen to clients caught in their
lair.
So much should they learn and discover, Therewith enhance skills and knowledge to
share.
S.L. Jan. 30, 2001
Le Retour
Returning to the present I see naught Yet in that nothingness, all is pure This present is not the present of before. My ancient dreams and
memories have
faded Into the receding wall that cuts across my
soul. Now life begins anew.
Returning to the present I wonder, no longer wandering, Where have I been dwelling These past four years and more?
The struggle is over; I have lost the tug of war
Between what was and what will be. Thus have I won the right of return to the
present A present that I know not, but shall discover As I embark upon this journey Ere half my life is spent—and more!
Returning to the present I am enrobed in the cool breeze of evening Turning into night before the break of dawn. My knees are locked
together as a child
baulking Before fearfully taking those tentative first
steps Towards the brave new world of an
unknown present Of venturing into the to be discovered here
and now.
I have stumbled reluctantly Through that valley of the shadow of death And I feared all good and all evil. I have seen no end and
dreamed of no new
beginning Yet, despite myself, I have been reborn Far from the madding crowd of memories of
my life before;
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personal narraTive
A life which, in retrospect, prepared me adequately
In my inadequacy to return to the present.
Now I smell the rain Before a new storm breaks Before tomorrow’s robin calls. Returning to the present, I see nothing And, thus, see all.
S.L Sept. 5, 2002
Suzanne’s Epilogue
Ten years have passed; now all of this seems history. My deficits remain; but I have learned to live relatively peaceful with them,
integrating them into my being and manag- ing to enjoy a life which is still rich and ac- tive. It is not my previous life. Most people live
once; I have had the opportunity to live twice. I am supplementing, or, should I say, complementing my pre-accident/ brain injury life
with my present life. I do not know at what point I stopped mourning what I was to simply become what I now am. I know that many
fac- tors, some of which are discussed in this paper played their role.
Is not recreation about being and becom- ing? Each of us be and become in our own time and in our own way—with a little help from
our friends and our therapists!
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