Traumatic Brain Injury (TBI): Implications for the Family of Individuals with TBI Bridget H. Staten, RhD, CRC, BCPC Associate Professor - South Carolina

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 UniversitySeptember 6, 2012

TACE Center: Region IV, a project of the Burton Blatt Institute.Funded by RSA Grant # H264A080021. © 2012

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Objectives

• 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 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 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

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 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)

Features Outcome

Trust vs doubtAcceptance of psychiatric

disabilityTrust in the concept of

recovery

Hope vs shameGrapple with loss of

control of one’s mind; illness symptoms

Coping skill development; Hope for personal recovery

Empowerment vs guilt

Address frustration and anger; empower self;

minimize disability

Focus on empowerment; Search for personal recovery plan. Use strengths; banish

guilt

Action vs inactionFight static disability & isolation; create “social

niche”

Seek purposeful work & leisure pursuits


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Recovery Stages (cont.)Features Outcome

“New” self vs“Sick” self

Am I my disease?Separate personal identity

from illness

Intimacy vs isolationEstablish intimate

relationships; integrate recovery

Seek out intimacy with a peer to share recovery life

Purpose vs passivity Establishing a “life niche”; altruistic giving

back

Living well with a mental illness

Integrity vs despair

Reflecting on life lived with psychiatric

recovery

Provide mentorship and wisdom


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Recovery Process

• Most adults with a brain injury progress 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

• 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

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

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.)• 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, 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 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

• provision for special 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 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 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 activitiesSteve 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 meaningfulWhenever possible, Steve is provided with opportunities to mentor other workers, since this was something he did prior to his injury.


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• Negotiate daily routinesSteve 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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• Adjust tasks and expectations to facilitate successSteve is given less complicated tasks in the afternoon when he’s more fatigued.

• Create positive behavioral momentumBefore 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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• Teach positive communication alternatives to negative behaviorSteve 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 behaviors Staff praise Steve for completed tasks and using appropriate behavior at the end of his shift.

• Use rewards for positive behaviorsSteve 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 behaviors occurSteve’s incentive bonus is reduced when he behaves inappropriately.

• Give time out for negative behaviorsSteve is encouraged to go to a quiet office space when he’s having difficulty.


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TCM (5)

• Planned ignoring of negative behaviorsStaff 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.• 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 Caregiving180 Montgomery Street Suite 900San Francisco, CA [email protected] http://www.caregiver.orgTel: 415-434-3388 or 800-445-8106National Institute on Disability and Rehabilitation Research (NIDRR)U.S. Dept. of Education Office of Special Education and Rehabilitative Services400 Maryland Ave., S.W.Washington, DC 20202-7100http://www.ed.gov/about/offices/list/osers/nidrrTel: 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 110Vienna, VA [email protected] http://www.biausa.orgTel: 703-761-0750 800-444-6443Brain Trauma Foundation7 World Trade Center 250 Greenwich St.34th FloorNew York, NY [email protected] http://www.braintrauma.orgTel: 212-772-0608


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Counselor Resources (cont.)

National Stroke Association9707 East Easter LaneSuite BCentennial, CO [email protected] http://www.stroke.orgTel: 303-649-9299 800-STROKES (787-6537)National Rehabilitation Information Center (NARIC)8201 Corporate DriveSuite 600Landover, MD [email protected] http://www.naric.comTel: 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).


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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


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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: [email protected]

Antoinette C. Hollis, EdD, LPC, NCC, BCPC

Assistant Professor - Clark Atlanta University

email: [email protected]


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Education CreditsCRCC 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 IVToll-free: (866) 518-7750 [voice/tty]

Fax: (404) 541-9002

Web: TACEsoutheast.org

My TACE Portal: TACEsoutheast.org/myportal

Email: [email protected]


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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)].

Documents

Traumatic Brain Injury (TBI): Implications for the Family of Individuals with TBI Bridget H. Staten, RhD, CRC, BCPC Associate Professor - South Carolina