Traumatic Brain Injury
(TBI): Implications for the
Family of Individuals with TBI
Bridget H. Staten, RhD, CRC, BCPC
Associate Professor - South Carolina State
University
Antoinette C. Hollis, EdD, LPC, NCC, BCPC
Assistant Professor - Clark Atlanta University
September 6, 2012
2
Objectives
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Review TBI Population
Identify potential impact of TBI on the family dynamics
Gain an understanding of the recovery process
Discuss the “Treatment Team” and its responsibility in
the recovery process
• Review Behavioral management strategies
• Identify coping strategies to assist family and caretakers
of TBI individuals
• Identify important factors that influence the rehabilitation
process
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TBI Definition
• Traumatic Brain Injury (TBI) is defined as “a blow or jolt
to the head or a penetrating head injury that disrupts the
function of the brain” (CDC, 2010).
• Injury varies (i.e., mild, moderate, severe)
• Short or long term problem
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TBI Impact
To assist in understanding the impact of TBI on
life changes, a patient states:
“Imagine waking up each day with a
pounding headache, always feeling like you have
a hangover plus a bad flu after being up three
nights in a row; having trouble concentrating,
remembering, and getting your thoughts together;
losing your temper and snapping at people for no
reason. On top of that, nobody believes you or
thinks your crazy.”
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TBI Population
Each year, an estimated 1.7 million people sustain
a TBI annually. Of them:
• 52,000 die,
• 275,000 are hospitalized, and
• 1.365 million, nearly 80%, are treated and released from
an emergency department.
• At least 3 people sustain a TBI every minute.
• 5.3 million people live with disabilities caused by a TBI
(CDC, 2010).
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TBI Population (cont.)
• TBI is a contributing factor to a third (30.5%) of
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all injury-related deaths in the United States.
About 75% of TBIs that occur each year are
concussions or other forms of mild TBI.
In one year alone, TBIs cost Americans $76.5
billion in medical care, rehabilitation, and loss of
work (CDC, 2010).
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TBI Population
• In every age group, TBI rates are higher for
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males than for females.
Traumatic brain injury (TBI) is a significant
health issue which affects service members and
veterans during times of both peace and war.
Blasts are a leading cause of TBI for active duty
military personnel in war zones.
(CRS Report to Congress, 2010)
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Effects: Physical and Cognitive
Physical Changes
• Headaches
• Difficulty speaking
• Blurry eyesight
• Trouble hearing
• Loss of energy
• Change in sense of taste
or smell
• Dizziness or trouble with
balance
Cognitive Changes
• Difficulty concentrating
• Trouble with attention
• Forgetfulness
• Difficulty making
decisions
• Repeating things
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Effects : Emotional and Social
Emotional Changes
• Irritability
• Getting frustrated easily
• Acting without thinking
Social/Behavioral Changes
• Getting frustrated easily
• Acting without thinking
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Effects of TBI
• TBI comprises cognitive, somatic and behavioral
•
problems, including concentration, attention, and
memory setbacks, sleep dysfunction, headache, anxiety,
depression, and irritability.
Persons with TBI sometimes experience anxiety-related
symptoms such as extreme apprehension, interpersonal
sensitivity and social alienation.
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Road to Recovery
• Everyone in the Family shares the injury
• Everyone needs to recover
• Everyone deserves time and resources
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necessary for recovery
Each person can potentially help the others
Each can potentially harm the others
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Road to Recovery (cont.)
• Rehabilitation isn’t necessarily about getting
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•
back to “normal.” It may be about creating a new
“normal.”
The family is critical to improvement in functional
abilities.
If the family is realistic in its expectations and
provide sufficient structure, guidance, and
support without fostering dependence, the
likelihood of improvement is increased.
(White, Driver and Warren, 2008)
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Recovery Stages
(Vogel-Scibilia, McNulty, Baxter, Miller, Dine, and Frese, 2010)
Trust vs doubt
Hope vs shame
Features
Outcome
Acceptance of psychiatric
disability
Trust in the concept of
recovery
Grapple with loss of
control of one’s mind;
illness symptoms
Coping skill development;
Hope for personal recovery
Empowerment vs
guilt
Focus on empowerment;
Address frustration and
Search for personal recovery
anger; empower self;
plan. Use strengths; banish
minimize disability
guilt
Action vs inaction
Fight static disability &
Seek purposeful work &
isolation; create “social
leisure pursuits
niche”
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Recovery Stages (cont.)
“New” self vs
“Sick” self
Features
Outcome
Am I my disease?
Separate personal identity
from illness
Establish intimate
Intimacy vs isolation relationships; integrate
recovery
Purpose vs passivity
Integrity vs
despair
Establishing a “life
niche”; altruistic giving
back
Seek out intimacy with a
peer to share recovery life
Living well with a mental
illness
Provide mentorship and
Reflecting on life lived
wisdom
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with psychiatric
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Recovery Process
• Most adults with a brain injury progress
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•
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through common recovery stages.
The length and outcome of each stage
cannot be predicted.
During recovery, a person may shift back and
forth between stages.
Inconsistency is common.
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Stages of Family Adaptation
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Anger
Panic
Shock
Denial / Disbelief
Guilt / Sorrow
Isolation
Hope / Adaptation
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Possible Sources of Stress
• Loss of Friends
• Family (most of the extended, even immediate family
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may be absent)
Finances
All that was normal--new routines, places, faces
Certainty--replaced by unpredictability, fear
Changing family roles (e.g., breadwinner, emotional
caretaker and sibling roles)
Reassigning Roles/Family dynamics
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Possible Sources of Stress
(cont.)
• Learning to live with these changes from TBI
•
produces stress for the injured individual and for
those who care for that person.
Helping families and caregivers identify points of
stress, replace stressors with pleasant things
and maximizing the capabilities of the family
member with TBI.
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Helping the Family Cope with
Change
• Rosenthal & Young (1988) were the first to identify
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potential family interventions including: education, family
counseling and/or family therapy, marital and sexual
counseling, family support groups, family networking,
and family advocacy.
Helping the family members plan ahead and find balance
is key to coping with change.
Communicate needs constructively
Set goals
Seek outside help and assistance
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Helping the Family Cope with
Change (cont.)
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Involve Whole Family
Acknowledge Unique Issues
Resiliency for Coping Skills
Risks for Early Intervention
Multi-Component Interventions
Identify Military/Civilian Resources
Advocate for Cohesion of Support
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The Treatment Team
• The treatment team is an important source of
•
information and support to the injured person
and family.
The treatment team can consist of family
members, caregivers, individual with TBI
Rehabilitation Counselors, Physiatrists, Physical
Therapist, Occupational Therapist,
Neropsychologist, Speech and Recreational
Therapist, Clinical Nurse, and other Specialist as
needed.
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The Treatment Team (cont.)
• The involvement of other family members,
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caregivers, friends and co-workers also can help
the person with brain injury successfully return
home and to the community.
The survivor of a brain injury often requires
extended rehabilitation and other services
tailored to the individual and family.
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Family Unique Needs
• location and affordability
• provision for special
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of housing
ordering and monitoring
medications
financial oversight needs
need for supervision or
monitoring
maintaining sobriety
maintaining proper daily
living skills
proper activity selection &
participation
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medical needs
sustainability of needed
therapies
securing transportation
maintaining employment
avoiding negative peer
pressure
constructive use of free
time
engaged in positive social
interactions
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Families Role in Treatment
• Setting realistic goals and expectations for TBI
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•
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family member and other family members
involved in the process.
Becoming an advocate
Trusting and building trust in the “treatment
team”
Remaining healthy mentally, physically, and
emotionally.
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TBI Behavioral Management
• Positive Behavioral Support (PBS) provides a
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holistic approach to behavior management
emphasizing personally meaningful life-style
changes.
Rather than focusing exclusively on the problem
behaviors, PBS provides a holistic approach to
behavior management emphasizing personally
meaningful life-style changes.
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TBI Behavioral Management
(cont.)
• Effective behavior strategies involve preventing
•
or minimizing problem behavior and using
effective consequences to increase desired
behavior and minimize dysfunctional behavior.
Rewards for behaving positively are built into
everyday routines and behaviors are taught in
the setting in which they are needed.
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TBI CASE: STEVE
Background:
Steve, 45 years old owned an auto-shop prior
to his brain injury sustained in a fall. He is now
employed in a supported work setting and
experiences challenging behaviors at the end
of his work shift.
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PBS Strategies (1 & 2)
• Provide options for choice of activities
Steve is asked what types of work activities he
would like to do that are within his abilities and the
work available.
• Insure that activities/routines are personally
meaningful
Whenever possible, Steve is provided with
opportunities to mentor other workers, since this
was something he did prior to his injury.
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PBS Strategies (3 & 4)
• Negotiate daily routines
Steve is asked when he would like to do certain
tasks at work and the best time for breaks.
• Change the environment (both setting and other
individuals, as appropriate)
Supervisors modify the style/tone of their prompting
to avoid frustrating. Steve (clear/concise directions;
not condescending). They also change his work
station to make it look more like his auto-shop work
bench.
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PBS Strategies (5 & 6)
• Adjust tasks and expectations to facilitate
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success
Steve is given less complicated tasks in the
afternoon when he’s more fatigued.
Create positive behavioral momentum
Before he’s given a complicated sorting task
involving several items, Steve is asked to do a
simpler sorting task that involves just 2 items.
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PBS Strategies (7 & 8)
• Teach positive communication alternatives
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to negative behavior
Steve is trained (coached) to ask to take a break
before he gets overwhelmed.
Natural and logical rewards for positive
behavior
Steve and his supervisors and other co-workers
enjoy a post-shift soda and chat (debriefing how
his day went) before they leave for the day.
(Teaching Research Institute, 2010)
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Traditional Contingency
Management (TCM)
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TCM Overview
This approach emphasizes decreasing
dysfunctional behaviors and increasing
positive behaviors by controlling what
happens after a behavior has occurred. It is
important to reinforce or praise only if it is
meaningful to the person.
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TCM (1 & 2)
• Reinforce positive behaviors over negative
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behaviors
Staff praise Steve for completed tasks and using
appropriate behavior at the end of his shift.
Use rewards for positive behaviors
Steve is paid an incentive bonus when he
behaves appropriately and completes all his
assigned tasks.
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TCM (3 & 4)
• Take away privileges when negative
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behaviors occur
Steve’s incentive bonus is reduced when he
behaves inappropriately.
Give time out for negative behaviors
Steve is encouraged to go to a quiet office space
when he’s having difficulty.
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TCM (5)
• Planned ignoring of negative behaviors
Staff decide to ignore Steve’s behaviors, as long
as he’s not endangering himself and others.
They assume that if they pay attention to him,
the behaviors will increase.
(Teaching Research Institute, 2010)
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Factors that Influence the
Rehabilitation Process
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Factors: Education
Education, education, education.
• Information is empowering
• Families/parents need to be educated about what
we know about TBI.
• Families/parents need to be educated about
available resources.
• Professionals (e.g., schools, physicians) need to be
educated about what is known about TBI (e.g.,
diagnosis, assessment, interventions).
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Factors: Support
Support for families and the child.
• Even with education, the process of recovery is not
clearly delineated for anyone involved.
• Find a “quarterback” for this process.
• Even if families/children are not ready for specific
interventions, the quarterback should be available to
discuss possibilities.
• If you are a parent/caregiver, take care of yourself!
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Factors: Monitoring
Active monitoring and surveillance
mechanisms are critical.
• TBI is a dynamic disorder, with changes (positive
and negative) occurring over time.
• May require different types of interventions at
different points in time.
• Families/individuals may be ready to try a
particular intervention at different points in time.
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Factors: Collaboration
There must be increased collaboration
between professionals to ensure a higher
quality of care.
• Professions from medical, psychological, allied
heath (OT, PT, Speech/Language), and education
need to have open and frequent lines of
communication.
• School/work transition issues are critical.
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Factors: Prevention Activities
Prevention activities remain critical to
addressing this health issue.
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Bicycle helmet laws
Speed limit laws
Drunk driving laws
Shaken Baby Syndrome education (especially for
young males)
• Recreational safety issues
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Factors: Advocacy
Advocacy for individuals with TBI will
remain critical.
• Educating our legislators about TBI and the
importance of key funding streams.
• Increased funding initiatives for TBI (e.g., IDEA
legislation of 1990, Medicaid waivers, Traumatic
Brain Injury Act of 1996).
• Make your needs and concerns known to your
local state and congressional representatives.
(Hopper, 2011)
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Counselor Resources
Family Caregiver Alliance/ National Center on Caregiving
180 Montgomery Street Suite 900
San Francisco, CA 94104
info@caregiver.org http://www.caregiver.org
Tel: 415-434-3388 or 800-445-8106
National Institute on Disability and Rehabilitation Research
(NIDRR)
U.S. Dept. of Education Office of Special Education and
Rehabilitative Services
400 Maryland Ave., S.W.
Washington, DC 20202-7100
http://www.ed.gov/about/offices/list/osers/nidrr
Tel: 202-245-7460 / 202-245-7316 (TTY)
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Counselor Resources (cont.)
Brain Injury Association of America, Inc.
1608 Spring Hill Rd. Suite 110
Vienna, VA 22182
braininjuryinfo@biausa.org http://www.biausa.org
Tel: 703-761-0750 800-444-6443
Brain Trauma Foundation
7 World Trade Center 250 Greenwich St.
34th Floor
New York, NY 10017
education@braintrauma.org http://www.braintrauma.org
Tel: 212-772-0608
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Counselor Resources (cont.)
National Stroke Association
9707 East Easter Lane
Suite B
Centennial, CO 80112-3747
info@stroke.org http://www.stroke.org
Tel: 303-649-9299 800-STROKES (787-6537)
National Rehabilitation Information Center (NARIC)
8201 Corporate Drive
Suite 600
Landover, MD 20785
naricinfo@heitechservices.com http://www.naric.com
Tel: 301-459-5900/301-459-5984 (TTY) 800-346-2742
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References
• Burns, D.D. (1989). The Feeling Good Handbook. New York: Penguin
•
•
•
•
•
•
Group.
Caudill, M.A. (1995). Managing pain before it manages you. New York:
Guilford Press.
Centers for Disease Control and Prevention (2006), National Center for
Injury Prevention and Control. Report to Congress on mild traumatic brain
injury in the United States: steps to prevent a serious public health
problem. Atlanta (GA): Centers for Disease Control and Prevention.
Centers for Disease Control and Prevention. (2010). Facts about
concussion and brain injury: Where to Get Help.
Chronister, J. & Chan, F. (2006). A stress model of caregiving for
individuals with traumatic brain injury. Rehabilitation Psychology, 51(3),
190-201.
Colter-Maxwell, M. Missing pieces: A coping guide for families of head
injury victims. Fort Collins, Colorado: MCM Books.
Coronado, McGuire, Faul, Sugerman and Pearson. (2012). The
Epidemiology and Prevention of TBI (in press).
TACE Center: Region IV, a project of the Burton Blatt Institute.
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References (2)
• CRS Report to Congress (2010). U.S. Military Casualty Statistics:
Operation New Dawn, Operation Iraqi Freedom, and Operation
Enduring Freedom.
• Faul M, Xu L, Wald MM, Coronado VG. (2010). Traumatic brain injury
in the United States: emergency department visits, hospitalizations,
and deaths. Atlanta (GA): Centers for Disease Control and Prevention,
National Center for Injury Prevention and Control.
• Finkelstein E, Corso P, Miller T and associates. (2006). The Incidence
and Economic Burden of Injuries in the United States. New York (NY):
Oxford University Press.
• Hopper, S. R. (2011). Treatment approaches and strategies for TBI.
Carolina Institute for Developmental Disabilities, University of North
Carolina School of Medicine. Chapel Hill: NC.
• Rosenthal, M. & Young, T. (1988). Effective family intervention after
traumatic brain injury. Journal of Head Trauma Rehabilitation, 3, 42-50
TACE Center: Region IV, a project of the Burton Blatt Institute.
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References (3)
• Teaching Research Institute. (2010). Managing Behavior
Dysfunction Post TBI Part II: Behavior Management Strategies. Brief
#3, Western Oregon University.
• Vogel-Scibilia, SE., McNulty, KC., Baxter, B., Miller, S., Dine, M. and
Frese, FJ. (2010). The Recovery Process Utilizing Erikson’s Stages
of Human Development. Journal of Community Mental Health,
45(6), 205-414
• White, B., Driver, S. and Warren, A.M. (2008). Considering
resilience in the rehabilitation of people with traumatic disabilities.
Rehabilitation Psychology, 53(1), 9017.
• Willer, B.S., Allen, K.M., Liss, M., & Zicht, M.S. (1991). Problems
and coping strategies of individuals with traumatic brain injury and
their spouses. Archives of Physical Medicine and Rehabilitation, 72,
460-464.
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Comments & Questions
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Thank You
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Contact Information
Bridget H. Staten, RhD, CRC, BCPC
Associate Professor - South Carolina State
University
email: bhollis@scsu.edu
Antoinette C. Hollis, EdD, LPC, NCC, BCPC
Assistant Professor - Clark Atlanta University
email: ahollis@cau.edu
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Education Credits
CRCC Credit - (1.5)
Approved by Commission on Rehabilitation Counselor
Certification (CRCC)
• By September 16, 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
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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: tacesoutheast@law.syr.edu
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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)].
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