Traumatic Brain Injuries (TBI)
Coping With Grief and Loss
Experienced By Caregivers
Tammara Thomas, ABD, MS, VRC
University of Iowa - Instructor
Veterans AdministrationVocational Rehabilitation Counselor
July 30, 2012
Throughout this webinar, attendees will be allowed to ask questions. Note that
presenters will provide a response based on limited and unverified information.
These responses should not be construed as direct advice regarding the issue
raised, nor should they be construed as a formal opinion issued by CRCC.
2
Objectives
• Review of Traumatic Brain Injury and Symptoms
• Veteran and TBI
• Gain understanding of the impact of TBI on Caregivers
•
•
•
and Family Systems
Attending from the perspective of grief and loss
Introduction of Conceptual Model of Health-related
Quality of Life
Strategies for families and rehabilitation professionals to
assist individuals with TBI
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Traumatic Brain Injury (TBI)
defined
Department of Defense and the Department of
Veteran Affairs (2007)
“Any traumatically induced structural injury and/or
physiological disruption of the brain function as a result
of an external force that is indicated by a new onset or
worsening of at least on of the following clinical signs,
immediately following the event.”
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5 TBI Diagnosis Criteria
1. Any period of loss of or a decreased level of
consciousness;
2. Any loss of memory for events immediately before or
after the injury;
3. Any alteration in mental state at the time of the injury;
4. Neurological deficits;
5. Intercranial lesions
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Types of TBI injuries
Focal Injury (Open):
This is an injury that results from a direct blow to the head
(penetrating). The skull is fractured with a blow. The
injury can be to a specific area of the brain.
Closed Injury:
The injury results from a blow or a violent shifting of the
brain. The skull isn’t broken, but the brain tissue can be
damaged through tearing or shearing.
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6
Epidemiology of TBI
Facts:
• TBI is a leading cause of death and disability in the U.S.
•
•
(CDC, 2007)
5.3 million people have enduring disabilities as a direct
result of TBI. (CDC, 2007)
Estimated costs such as hospital care, lost of
productivity (indirect), extended care, and other medical
are services were estimated at $60 billion. (Finkelstein,
et al., 2006)
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Military TBI
The military is calling TBI the “signature injury” of Operation
Enduring Freedom and Operation Iraqi Freedom
(OEF/OIF). Active Duty timeline is from September 11,
2001-Present.
In 2009 there were 1,313 veterans who received VA
Inpatient hospital care for TBI.
33% of all patients with combat related injuries and
60% of patients with blast-related injuries seen at Walter
Reed Army Medical Center have sustained a TBI.
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
8
Severity of Traumatic Brain
Injury (TBI)
The severity of TBI is a continuum, and the classification
used to designate if a patient has mild, moderate, or
severe TBI. The classification is arbitrary because the
level of the TBI is not able to predict the patient’s
likelihood of functional recovery.
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Severity Grades
Severity Grades are defined by using four
indexes:
1. The Glasgow Coma Scale (GCS)
2. The length of coma (duration of unconsciousness).
3. Length of period of altered consciousness (mental
4.
status) and,
Length of posttraumatic amnesia (PTA)
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Funded by RSA Grant # H264A080021. © 2012
10
Types of TBI
Closed Head Injury:
The blow to the head to leave the skull intact, but the brain
shifts within the skull resulting in damage.
Open Head Injury:
Penetration or fracture of the skull, which may cause more
localized damage.
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11
Brain Injury Measurement of
Severity and Classifications
MEASUREMENT: GLASCOW COMA SCALE (GCS)
Source: White and Likavec (1992)
An instrument that has become widely accepted as
a classification system for measuring the
seriousness of brain injury. (Jenner, Snoek,
Bond, & Brooks, 1981).
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The Glascow Coma Scale
Category
Eyes Open
Best Verbal Responses
Best Motor Responses
Score
Never
1
To pain
2
To verbal Stimuli
3
Spontaneously
4
None
1
Incomprehensible sounds
2
Inappropriate Words
3
Disoriented/Converses
4
Oriented/Converses
5
None
1
Extension (rigidity)
2
Flexion abnormal (rigidity)
3
Flexion withdrawal
4
Individual Localized Pain
5
Individual obeys
6
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Total 3 - 15
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Classification of TBI - Mild
Mild: A Glascow Score of 13 or higher
Occurs post-concussion (months/years later after injury)
Characterized by subtle but disruptive symptoms.
Disruptive Symptoms
Headache, vertigo (dizziness), sleep disturbance tinnitus,
depression, irritability, reduced attention span, and
memory impairment. There is at least one symptom that
result from disruption of brain functioning.
70% of all TBI’s are considered mild. These symptoms can
be undetectable and may not be diagnosed.
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14
Classification of TBI - Moderate
Moderate: A Glascow Score of 9-12
Characterized by a loss of consciousness for a few
minutes or several hours. There may disorientation
and confusion that can lasts for a few days or
several hours.
Disruptive Symptoms
• Physical Deficits
• Cognitive Deficits
• Psychosocial Deficits
Symptoms may resolve in a few weeks, months, or remain
permanent.
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
15
Classification of TBI - Severe
Severe: A Glascow Scale of 8 or less
Characterized by a loss of consciousness (COMA) for an
extended period of time.
Disruptive Symptoms include:
• A vegetative state
• May open their eyes in response to painful stimuli but
the response isn’t meaningful
The more severe the injury and depending on the location,
the deficits can be permanent.
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
16
Points to Remember!
• TBI is the “signature injury” of our last war.
• TBI may resolve quickly, but may be permanent
• Symptoms of TBI usually fall into three
categories:
 Physical
 Cognitive
 Emotional/Behavioral
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
17
More Points!
• Brain injury severity is classified by signs and
symptoms at the time of the original injury.
• The majority of TBI’s are mild.
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
18
Who is This Person?!
The presence of emotional and behavioral, and
personality change after a head injury has been
long recognized (Goldstein, 1942; Harlow,
1968).
The changes in personality that result from a head
injury can be the most distress after effects for
families (Lishman, 1978)
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
19
The Veteran and TBI
Poly Trauma is a word used to describe multiple or a
combination of wounds that impact more than one
physical region or organ system.
• Open wounds, eye injuries
• Traumatic amputations,
• TBI
• Spinal cord injuries
• Mental health issues
• Musculoskeletal
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20
The Veteran and TBI
Cognitive Impairments
Denote a decline in intellectual or mental processing of
information. This can occur immediate after acquiring a
TBI. The ability to mediate behavior, self-monitor,
problem solve, and strategically plan can be diminished.
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Funded by RSA Grant # H264A080021. © 2012
21
Cognitive Impairments
Cognitive effects following TBI often co-exist with other
psychological conditions such as:
• adjustment difficulties
• depression
• interpersonal conflicts
• PTSD
The overlap of both cognitive and emotional issues should
be address through collaborative interventions.
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
22
Common Cognitive
Symptoms
Problematic Symptoms:
• Attention
• Memory Difficulty
• Executive Functioning
• Communication Problems
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Funded by RSA Grant # H264A080021. © 2012
23
Cognitive Recovery
In the days and weeks following TBI, many aspects of
cognition improve quickly.
Early education about possible cognitive symptoms and
expectations for full recovery is important.
It has been shown to have a positive impact on the
resolution of cognitive problems (Mittenberg, 1996).
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
24
Cognitive Recovery Outcomes
Many patients with moderate injuries can and, for
the most part do, recover cognitive skills to a
level of independent function so that they can
return to work or resume their usual
responsibilities.
Fewer patients with severe injuries return to work
or independent living.
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
25
Cognitive Recovery Outcomes
According to Brooks et al., 1986
Physical impairments may be prominent early in
the recovery process; however cognitive and
behavioral impairments are more persistent and
make greater contribution to long-term disability.
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
26
Points to Remember!
• Concussions can generally cause mild cognitive
symptoms, while more severe injuries may have more
persistent and pervasive cognitive consequences
• In the first few months post-TBI, rapid improvement is
considered the rule
• Compared to patients with mild to moderate TBI, fewer
patients with severe injuries return to work or
independent living
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
27
Emotional Difficulties
Facts:
• Emotional difficulties, adjustment issues, and behavioral
•
problems are common following moderate to severe
brain injury (Sohlberg & Mateer, 2001).
Premorbid psychiatric problems, such as impulse control
difficulties, substance abuse, and family problems
increase the risk for brain injury (Vassallo et al., 2007).
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
28
Emotional Difficulties Cont.
• Following a brain injury, one has to deal with
both pre-injury characteristics as well as the
emergence of new post-injury
emotional/behavioral problems.
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
29
Emotional Symptoms
• Difficulty tolerating frustration or higher levels of
•
•
stimulation.
Impaired ability to process information or
understand situations accurately.
Post-TBI behavior problems can also occur
because individuals become fatigued much
more easily, increasing irritability and lowering
frustration tolerance.
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
30
Impact of Emotional
Impairment
As a result, emotional issues following a brain
injury often include:
• Increased anger
• Lowered frustration tolerance
• Increased anxiety
• Depression
• low self-esteem
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
31
Emotional/Behavioral
Additional Issues:
• Social problems, difficulty appropriately reciprocating in
social interactions
• Excessive talking
• Over-dependency
• Immature behavior
• Inappropriate use of humor
• Inappropriate sexual behavior
• Poorly controlled spending
• Self-centeredness
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
32
So What?
Besides the fact that these issues are personally
debilitating for the veteran.
The difficulties that result from physical, cognitive,
emotional and behavioral deficits serve only cause
displacement in to social group membership for the
veteran, but, further resulting in long-term obstacles for a
successful recovery (Wood & Yardukal, 1997).
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
33
Caregiver and Family Systems
The changes that occurs physically, emotionally an
cognitively in survivors of TBI can be not only
overwhelming for the veteran but caregivers and the
family.
Family systems vary in their ability to cope with life in the
aftermath of the injury.
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
34
Factors
Contributing factors to family and caregiver
adjustment include:
• Pre-existing Factors (caregivers health, hx of psychiatric
issues, socio-economic resources, etc.)
• Relationship Factors can contribute to adjustment of
caregivers (ie. Spouses who provide care report more
health and psychological issues, than parents of those
with TBI.
• Post-injury issues (i.e. financial burden, hospital bills,
loss of income, separation from military).
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
35
Lezak (1986) Stage Theory of
Emotional Reaction
adapted from Lezak
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Stage Time Since Injury
Expectation
Family Reaction
36
Lezak (1986) Stage Theory of
II
1-3 months to 6-9
Full recovery if the patient Bewildered, anxious, begin to
Emotional
Reaction
months
just tries harder
realize severity, frustrated, loss,
I
0-1 to 3 months
Full Recovery by 1 year
Relief, shock, denial,
depression, avoidance
realize their lack of knowledge
III
6 to 24 months or can
continue indefinitely
Patient can become
independent if family
knows how to help
Impatient with veteran,
recognizes the person is more
impaired than they thought,
guilty feelings, discouraged,
information seeking.
IV
9 months or later, can
continue indefinitely
Little or no change
Feeling “trapped”, exhausted
and need respite, begin to
realize the impact, experience
bereavement, veteran’s
disabilities may bother family
immensely
V
12 months or later,
usually time limited
Little or no change
Sadness and mourning, begin
to understand & begin process
of accepting losses
VI
18 months to 3 years
post injury
Little or no change
Reorganization and change in
family system, creative helping,
time, empowerment and
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Institute.
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advocacy.
37
Conceptual Model of HealthRelated Quality of Life
(Ferrans, Zerwic, Wilbur, & Larson, 2005)
Over the last 30 years the evaluation of how to evaluate
quality of life have become important in healthcare
outcomes.
The HRQ0L Model considers the idea that the following
must be considered when evaluating Quality of Life.
Additionally, certain components can relate to how
happy or satisfied someone is with life as a whole.
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38
Model Considerations
The model considers:
1. Biological Function (ie. Diagnosis, labs. The biological
function speaks to an individuals physical resiliency and
vulnerabilities.
2. Symptoms (defined as the patient’s perception of
abnormal physical, emotional and cognitive states.
3. Functional Status: characterized no only by what they
can or cannot do, but also takes into account the
environmental factor that affect functionality
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Funded by RSA Grant # H264A080021. © 2012
39
HRQoL continued
4. General Health Perception: this component is a
5.
synthesis of all the other components in the model.
The asking individuals to self report their perception of
health with a single item measure is more of a
contribution when assessing factors that need to be
addressed.
Quality of Life: This measurement is important
because differences in values, may be the difference in
how one individual sees their impairment versus
another.
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Funded by RSA Grant # H264A080021. © 2012
40
Attending to Loss and Grief
Historically, there has been the study of loss and grief in
relation to understanding individuals coping when faced
with disability.
Pitzele (1985) suggested that developing a chronic illness
represented a major loss.
Loss of:
• Health, control over body, sense of well-being, and
idyllic self-image
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Funded by RSA Grant # H264A080021. © 2012
41
Loss and Grief
Elberlik (1980) said that any physical change in the body
will like cause reactions of acute anxiety and grief.
Scholars indicate that there is an relationship between
social, psychological and cultural factors that are
operative in one’s response to loss (Marris, 1974; Parks,
1975; Shontz, 1964; Worheit, 1979).
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42
Loss and Grief
Ben-Sira (1983) suggested the better control
one has in terms of resources, the more
likely they will experience successful coping.
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Funded by RSA Grant # H264A080021. © 2012
43
Strategies for Caregiver and
Family Adjustment
Successful reintegration of a person with a
history of TBI into their previous family
structure is essential in maximizing quality of
life and independence
(Sander, et al., 2002).
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44
Steps in helping adjustment
Caregivers and Practitioners
Step 1: Validate and Normalize
Individual benefit from someone listening to
their concerns and feelings. Use of basic
counseling skills are effective (attending,
reflecting, etc.)
Step 2: Educate
Psychoeducation regarding the recovery
process and how to adjust to changes in the
survivor can reduce distress and anxiety.
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
45
Steps Continued
Step 3: Collaborate and Refer (Practitioner
Specific)
Consultation with other healthcare professional,
community resources, family, employers, etc. is
necessary. Collaboration is essential in
determining what other services are needed and
available to the veteran. Consultation can help
with adjustment, logistical needs, community reintegration and training.
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
46
Resources
Brain Injury Association, Inc- www.biausa.org
Brain Injury Resource Center- www.headinjury.com
The Perspective Network- www.tbi.org
Recovery Awareness Foundation- www.tbinet.org/raf
Rosalyn Carter Institute for Caregiving www.rosalynncarter.org
Defense and Veteran’s Brain Injury Center www.dvbic.org
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
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Comments & Questions
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Funded by RSA Grant # H264A080021. © 2012
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Thank You
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Funded by RSA Grant # H264A080021. © 2012
49
Contact Information
Tammara Thomas
University of Iowa – Instructor
Veterans Administration - Vocational
Rehabilitation Counselor
Email: [email protected]
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
50
Education Credits
CRCC Credit - (1.5)
Approved by Commission on Rehabilitation Counselor
Certification (CRCC)
• By August 10, 2012, participants must score 80% or
better on a online Post Test and submit an online
CRCC Request Form via the MyTACE Portal.
My TACE Portal: TACEsoutheast.org/myportal
TACE Center: Region IV, a project of the Burton Blatt Institute.
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51
Southeast TACE Region IV
Toll-free: (866) 518-7750 [voice/tty]
Fax: (404) 541-9002
Web: TACEsoutheast.org
My TACE Portal: TACEsoutheast.org/myportal
Email: [email protected]
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
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Disclaimer
This presentation was developed by the
TACE Center: Region IV ©2012 with funds
from the U.S. Department of Education,
Rehabilitation Services Administration (RSA)
under the priority of Technical Assistance and
Continuing Education Projects (TACE) – Grant
#H264A080021. However, the contents of this
presentation do not necessarily represent the
policy of the RSA and you should not assume
endorsement by the Federal Government [34
CFR 75.620 (b)].
TACE Center: Region IV, a project of the Burton Blatt Institute.
Funded by RSA Grant # H264A080021. © 2012
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Traumatic Brain Injuries (TBI) Coping With Grief