Marilyn Lash, M.S.W.

Too many losses after brain injury

Surveys, research studies and published articles repeatedly cite facts and data about the multiple losses experienced by survivors of brain injury. Loss of friends, separation and divorce, unemployment, limited transportation, and inadequate housing – these regularly top the list. Whether the information has been gathered from a scientific study, telephone interviews or personal accounts – the results strike a common theme of lost relationships, social isolation, and limited choices.

Too often the direction and choices that persons with brain injury have in their lives are controlled by the availability of funding and resources for services and programs rather than by the survivor’s dreams and vision for the future. Despite the growth and expansion of brain injury rehabilitation over the last 30 years, the goals and wishes of most survivors and their families still have not been met. Al Condeluci asserts that it is time for rehabilitation professionals to ask the critical question of, “What do the people we serve want for themselves?”

A new look at the meaning of community and relationships

Condeluci’s vision of change is founded on the concepts of community and social capital. He defines “community” as a network of people who regularly come together for a common cause or celebration. Community is not defined or limited by its geography – it is based on the relationships among its members. The behaviors of people within the community develop the culture of the community.

Once you think of a community as a network of people rather than a place, then you realize it is the common cause of the members that unites them and forms their connections. This results in a sense of “social capital” among the members. Condeluci explains that, “Social capital refers to the connections and relationships that develop around community and the value these relationships hold for the members.”

Time to change our focus

Once you view personal relationships and community within this concept of social capital, then you readily see how limited or absent it is for too many persons with brain injury and other disabilities. Social capital is directly linked to building relationships, getting a job, finding someone to live with, and living a meaningful life. Condeluci suggests that our traditional rehabilitation model and philosophy has focused too narrowly on “fixing” people. It is time to shift the focus from fixing to helping people build and connect with their community. This requires envisioning and developing a new framework for human services that builds social capital for persons with brain injury and disabilities in order to address their goals and to finally provide a fulfilling quality of life.

References:

Condeluci, Al (2011). The Power and Potency of Social Capital. Brain Injury/Professional,  8(3), 8-11. 

Recommended Reading:

Together is Better: Creating a community where each belongs

Al Condeluci, Ph.D.

Book explores people with disabilities in society, including challenges and rewards of tolerating differences and developing a community where there is a place for young and old, children and adults, people with and without disabilities.

Essence of Interdependence: Building community for everyone

Al Condeluci, Ph.D.

By exploring the roles, expectations, behavior and stereotypes of people with and without disabilities, Condeluci shows how to support the development, growth and independence of people with disabilities in their communities.

 By Annie Pixley

Questions about the way a person who has experienced a brain injury will act and what their personality will be like are the most frequently asked.  Over time, it is the changes in social skills and behavior that are the biggest concern to families.  More than the physical effects of a brain injury, changes in how a person acts post brain injury can be more difficult to adjust to.   

After a brain injury, not everybody’s behavior will be affected or change in the same way.  Behavioral problems can occur in children and family members as well as the injured person.  Their change in behavior may be tied to a sense of loss over something as simple as a change in household routines.

Here is a sample of some basic myths and facts about behavior after brain injury:

• Myth … brain injury causes behavior problems

 

• Fact …. a person may act or behave differently because of changes in the brain after an injury or in reaction to how life has changed because of the injury

 

• Myth …. he acts that way to get attention

 

• Fact ….  all people act in different ways to get attention

 

• Myth …. changes in  behavior after brain injury are a sign of mental illness

 

• Fact ….   behavior can change for many reasons, but it is usually not because of mental illness

 
 
For more detailed information on these myths and facts, see;

Myths and Facts about Behavior after Brain Injury   

By Harvey Jacobs, Ph.D.
Brain injury behavior problems are reinforced by myths with inaccurate information about changes in behavior after head trauma. Helps families and caregivers understand causes and reasons for behaviors and learn how to respond positively.
 
 
 
 
 
 

If you’re looking for a comprehensive book to help understand the factors that cause behavior, see Dr. Jacobs’ new book;

Understanding Everybody’s Behavior After Brain Injury – Don’t “Don’t” ™

By Harvey Jacobs, Ph.D.

This book addresses the many different people, places and resources that are involved.  Everybody can work together more effectively when behavior is de-mystified.

By Annie Pixley

According to the Office on Disability, one out of two people with a brain injury has some sort of substance abuse. In contrast, the substance abuse rate among the general population is one in ten. Several factors contribute to this increased risk, including medicine and health problems, enabling by family and friends, an inability to identify potential problems and a lack of appropriate prevention and treatment services.

Among the many obstacles people recovering from a brain injury encounter are depression, isolation and boredom. Some survivors trying to cope with these myriad feelings turn to alcohol or drugs. Even casual use of these substances can have negative consequences for people recovering from and living with brain injuries.

The adverse effects alcohol and drugs have on a healing mind can be devastating to the quality of life for the brain injury survivor. The brain has to re-learn skills and this process can be inhibited by the consumption of alcohol and drugs, slowing the recovery.

People who have sustained one brain injury are more likely to sustain another.  Some traumatic brain injuries cause problems with balance, coordination, vision and judgment, all of which can be compounded with substance use. It is important to remember that no matter how much alcohol or drugs a person was able to use before, they can tolerate less after an injury. This is because the brain is more sensitive to alcohol and other drugs after a brain injury.

Seeking treatment for substance abuse is of the utmost importance. Too often, substance abuse treatment is not accessible to people living with a brain injury because of learning barriers caused by the injury. Treatment centers not familiar with brain injuries may misinterpret certain behaviors, classifying them as intentionally disruptive or resistant to treatment. It is essential for a person recovering from a brain injury to work with a counselor who understands the common behavioral challenges associated with brain injuries. 

References: 

Duane Reynolds, LSW, LADC, BCCR – The Challenge magazine, Fall 2010, pg. 36

Recommended Reading: 

Understanding Everybody’s Behavior After Brain Injury – Don’t “Don’t”

By Harvey Jacobs, Ph.D.

This innovative and comprehensive book helps you understand the intricate factors that cause behavior after brain injury. It shows how a person’s behavior is affected by other events and circumstances as much as the actual injury. It helps the many people, places and resources that are involved with the individual be more responsive and effective. It is ideal for training and staff development as well as for case consultation, service planning and program development.
 
 
Substance Abuse After Brain Injury

By John Corrigan, Ph.D. and Roberta DePompei, Ph.D. 

Brain injury tip card discusses risks of alcohol and drug use after head injury in adolescents and adults. Identifies signs of substance abuse and prevention.

By Annie Pixley

The caregivers and families of severely injured veterans, many of whom have traumatic brain injury and blast injury, face ongoing emotional and financial pressures.  There are thousands of unpaid caregivers, mostly parents, spouses and siblings, who assist vets injured in Iraq and Afghanistan, as they struggle to get through each day.  Many caregivers do not receive military benefits, and have had to quit jobs, move out of their homes and deplete their savings in order to care for their family member.  And since many caregivers of veterans are women, that puts additional strains on family responsibilities.  These family caregivers carry some unique burdens….they have had to endure the excruciating wait for the veteran’s return home after deployment and then eventually being there to help with the healing process of the physical and emotional wounds.  These burdens can be lifelong, creating frustrations for caregivers and veterans alike. 

Family caregivers can get more information on accessing services and resources supporting recovery by going to the National Resource Directory.

Veterans’ disabilities are not always service-related, including chronic illnesses and other health issues linked with aging.  However, the caregivers of veterans with combat-related injuries like post-traumatic stress disorder (PTSD), traumatic brain injury, paralysis, etc., make up the majority of critical cases.  

In May of 2010, President Obama signed into law the Caregiver and Veterans Omnibus Health Services Act of 2010, enabling family caregivers of seriously disabled veterans to receive required training and certification, access to ongoing support services, counseling and mental health services, as well as respite and medical care and a personal caregiver allowance. 

Information specifically for families and veterans dealing with PSTD and TBI can be obtained from Lash and Associates Publishing/Training Inc.at  www.lapublishing.com.  

References:  

Medical News Today – kaiserhealthnews.org,   vawatchdog.org,

Sherri Snelling – www.rl.tv/shows/Taking-Care/resources.cfm?id=17

Recommended Reading:

Explaining Brain Injury, Blast Injury and PTSD to Children and Teens 

By Marilyn Lash, M.S.W., Janelle Breese Biagioni, Tonya Hellard

When a parent is injured, sons and daughters often feel confused, scared, anxious and angry. This guide helps parents explain the physical, cognitive, behavioral, social and communicative changes that can follow a brain injury, blast injury or PTSD. Using examples from children of all ages, it helps them understand their emotional reactions to a parent’s injury or PTSD. Each chapter has an exercise for children and practical tips for children, parents and professionals.
 
 

Understanding the Effects of Concussion, Blast and Brain Injuries

A Guide for Families, Veterans, Service Members and Caregivers

Published by  Lash and Associates Publishing/Training Inc.

Blast injury, PTSD and brain injury guide for families and caregivers on the consequences of concussion in veterans. Used by many VA Hospitals and Army Medical Facilities.
 
 

Brain Injury – It is a Journey

By Flora Hammond, M.D., Tami Guerrier, C.T.R.S./L

This brain injury book for families explains consequences of traumatic brain injury and gives strategies for coping with changes in the survivor’s physical abilities, memory, attention, thinking and emotions.

Managing Care and Services after Brain Injury

By Donald R. Hood, B.A., Marilyn Lash, M.S.W., Ann Glang, Ph.D., Bonnie Todis, Ph.D.

Information and tips for families on adapting professional case management skills and applying them to managing care and services for a brain injury survivor at home and in the community.

These and other books on brain and blast injury to veterans, and the effects on caregivers are available from Lash and Associates Publishing/Training Inc at www.lapublishing.com/blast-injury-ptsd-military-veterans/.

By Annie Pixley

Traumatic brain injury is the leading cause of disability among children and youth.  Students returning to school with traumatic brain injuries may have an entire range of physical, cognitive, behavioral, social and emotional challenges.  Exposure to education can aid in the recovery of these functions. Much as schools promote learning, recovery is a re-learning process, so it is important for educators in the school system to provide support and services to students with brain injuries. 

Unfortunately, brain injury has dropped off our educators’ radar, and often goes unnoticed due to under-reporting and/or misidentification. However, more and more children, adolescents and young adults are surviving their injuries due to advances in medical technology. But students with brain injury who return to school  are often at a disadvantage because they require special accommodations, supports and services of which educators have little knowledge and training. Without these educational programs and services, students with brain injuries are at greater risk for lower academic performance, failing grades and dropping out of high school. If we are to meet the challenge of educating students with brain injuries, then we need to take some major steps toward changing our national educational system. 

Currently, there are 5.3 million Americans living with the effects of a long-term disability due to a brain injury, with 1.5 million sustaining a traumatic brain injury annually. Educators will admit to not knowing much about brain injury.  They believe that they have not had many, if any students in their classrooms who have sustained brain injuries. This, unfortunately, is a wide-spread misconception. The epidemic of TBI in our youth has posed many problems. Effectively educating these students can only occur if educators are given appropriate supports and transitional services. By not knowing how best to support the students, teachers are liable to inhibit the cognitive recovery of their students, compounding the challenges faced by them, and failing to prepare them for adulthood.

The SYSTEM needs to change

Right now, the mission is to increase teachers’ awareness of brain injury so that they can provide effective and appropriate educational supports and transitional services for the student brain injury community.  Access to this information will enable educators to provide students with improved opportunities for their futures – futures that encompass not only academic success, but also include the transition from high school into communities, businesses and higher-learning institutions. 

• Level 1 Change

use professional development to increase the level of competency among  

educators by providing a foundation of knowledge about brain injury

• Level 2 Change

expand educators’ skills to include identification and assessment of cognitive, 

physical and psychosocial challenges

• Level 3 Change

train educators in the learning differences of students with brain injury 

compared to other disabilities

• Level 4 Change

learn instructional strategies

• Level 5 Change

increase educators’ competency regarding awareness of how students’ learning

environments and social interactions can change after brain injury

Achieving any systematic change requires increasing the competency level of not only teachers, but also parents, administrators, professionals and the students themselves.

References

Almli, C. & Finger S. (1992). Brain injury and recovery of function: Theories and mechanisms of functional reorganization. Journal of Head Trauma Rehabilitation, 7(2), 70-77.

American Council on Education (1989). Head Injury Survivor On Campus: Issues and Resources. HEATH Resource Center (pp.1-11). Washington, DC.

Brain Injury Association of America (2001). [Media Resource Kit].

Finger, S. (1999). Margaret Kennard on Sparing and Recovery of Function: A Tribute on The 100th anniversary of Her Birth. Journal of the History of Neurosciences, 8(3), 269-285.

Gray, D.S., (2002). Mechanisms of Brain Injury, Markers of Severity, Classification, Sequelae of Injury and Recovery from Injury. BIRPP. Retrieved October 20, 2002 from Internet.

Johnson DA, Ruston S. & Shaw J. (1996). Virtual reality enriched environments, physical
exercise and neuropsychological rehabilitation. Proc 1st Euro. Conf. Disability. Retrieved October 19, 2002 from Internet.

Perna, R. (2002). Brain Injury: Does Age Really Matter? Brain Injury Source 6(2), 32-34.

Savage, R.C. & Wolcott, G.F. (Eds.) (1994). Educational Dimensions of Acquired Brain Injury. Austin, TX: PRO-ED, Inc.

Wehman, P. (1996). Applications for youth with traumatic brain injury. Life beyond the classroom: Transition strategies for young people with disabilities (pp. 445-478). Baltimore: Paul H. Brookes Publishing Co.

Recommended Reading

These and other books on brain injury symptoms, treatment and recovery are available from Lash and Associates Publishing/Training Inc.

Students with Brain Injury  

By Katherine Kimes, Ed.D., Marilyn Lash, M.S.W. and Ron Savage, Ed.D. 

This TBI manual for educators and parents provides a foundation for understanding the educational needs and behavioral challenges of children with traumatic brain injuries. 

Signs and Strategies for Educating Students with Brain Injuries  

By Marilyn Lash, M.S.W., Gary Wolcott, M.Ed. and Sue Pearson, M.A.

Manual describes the consequences of brain injuries on a student’s learning, behavior, communication, cognition and adjustment in school and at home.

By Annie Pixley

There is an overlap between traumatic brain injury (TBI) and violence which is an important yet little understood problem.  The exact number of violence-related TBIs each year is not known, yet the CDC estimates 11% of TBI deaths, hospitalizations, and emergency room visits combined are related to assaults.  To further complicate the problem of TBI and violence is the fact that violence is not only a cause, but a consequence of TBI.  In other words, cognitive and behavioral problems resulting from a traumatic brain injury can trigger aggressive behavior.  This behavior can lead to violence.  A lack of judgment and insight after TBI can result in vulnerability and victimization.

Violence as a Cause of TBI – Intimate Partner Violence

The term intimate partner violence is more commonly known as domestic violence, spouse abuse or woman abuse.  After a relationship ends, people can be at risk for violence from former partners.  There is no way to calculate the number of TBI cases associated with partner violence.  Many victims do not report such violence to the authorities, their family or friends because they think no one will believe them, and that the police cannot help.

Violence as a Consequence of TBI – Victimization

Victimization can include physical and sexual violence, psychological or emotional abuse, stalking and neglect.  A victim is defined as a target of emotional abuse, or someone who has been threatened with or actually physically and/or sexually abused.  Persons with disabilities are more vulnerable to violence – 4 to 10 times more likely to become a victim of violence, abuse or neglect.  Again, there is no way to calculate the number of persons with TBI in the U.S. who are victimized each year.

Reducing the Toll of Violence after TBI

Screening for possible TBI among persons who have experienced either intimate partner violence or victimization is key to ensuring that the people with TBI-related problems are diagnosed and receive necessary services.

References:

Jean A. Langlois, ScD, MPH;  Jeffrey Hall, PhD;  Matt Breiding, PhD;  Audrey A. Reichard, MPH, OTR;

Anne McDonnell, MPA, OTR/L;  Marlena Wald, MLS, MPH.

This fact sheet is based on an article:  Breaking the Silence:  Violence as a Cause and a Consequence of  Traumatic Brain Injury, Brain Injury/Professional,  Vol.5  Issue 1  2008, pages 8-12.  Brain Injury/Professional is the largest professional circulation publication on the subject of brain injury and is the official publication of the North American Brain Injury Society (NABIS).  Brain Injury/Professional is published jointly by NABIS and HDI Publishers.  Members of NABIS receive a subscription as a benefit of NABIS.  Visit www.nabis.org to order the entire issue or to become a member.

Recommended Reading:

Undiagnosed Brain Injuries in Youths and Adults

By Michael Mozzoni, Ph.D. and Marilyn Lash, M.S.W.

Describes signs and symptoms of traumatic brain injury and concussion in youths and adults that are often missed or overlooked. Provides checklists for identifying physical, cognitive, behavioral and social changes that may indicate a possible undiagnosed brain injury or concussion

Brain Injury It is a Journey

 By Flora Hammond, M.D. and Tami Guerrier, B.S., Editors

This brain injury book for families explains consequences of traumatic brain injury and gives strategies for coping with changes in the survivor’s physical abilities, memory, attention, thinking and emotions.

By Carolyn Rocchio

Puberty is the initiation of many hormonal and physical changes in the body – all of which frame a teenager’s identity, sense of self, independence and world view (Barton & Tepper).

The transition from childhood to adolescence is fraught with many physical and emotional changes. It can be a difficult time for the child and parents alike. Most families experience a period of major adjustment to the child’s changing mannerisms, quest for privacy and greater independence. When a child experiences a brain injury, either at a younger age or during this period of transition, it commonly creates many more problems than a child arriving at this age without a brain injury.

What does research tells us about adolescents and brain injury?

Research has been limited but a few studies have indicated that these youngsters:

•  have more than average difficulties in how they view themselves

•  often experience depression

•  function better when gender identity was well established before the injury.

•  will have difficulty with social behavior, such as, inappropriate touching, sexual aggression, and exhibitionism.

Rehabilitation professionals need to be knowledgeable about sexual development when treating these youngsters.  Sexual development includes physiological development, psychological development, social development and development of sexual knowledge (Barton & Tepper). Puberty is a time when adolescents can be highly emotional as they try to figure out issues relative to their development of self-esteem.  Changes in communication skills after a brain injury can make it even more difficult for adolescents to develop socially, understand relationships, identify gender roles, comprehend sex education, use contraception, and take responsibility for their actions.

Just as adults may experience hyposexuality and hypersexuality, so too do adolescents. When adolescents seem to have little or no interest or curiosity about sexuality, as most youngsters normally do at an age when hormones begin raging, they may be experiencing hyposexuality. The opposite effect of hypersexuality can become a very difficult behavior management issue. These adolescents often make crude remarks indiscriminately, masturbate or exhibit their genitals in public, tell off color jokes and display socially unacceptable behavior.

Congenital vs. Acquired Brain Injury

Adolescents normally experience a myriad of changes during adolescence.  Transitioning through this phase can be very emotional and puzzling at times as their bodies change along with their self perception. An injury at birth prepares a child very differently for the adolescent experience. Congenitally injured youngsters are often subjected to many tests and evaluations as they pass through their developmental years.  They may view their bodies as objects of evaluations. “Human touch has objectified the child’s body and it is not uncommon for children born with brain injuries to be unable to distinguish {good touch} from {bad touch.” (Barton and Tepper). They may experience a blurring of the line between what is right and what is wrong.

When the brain injury occurs after birth, yet during the developmental years, the adolescent period will still have the usual changes. However, the issues may be somewhat different depending on the level of learning, life experience and cognitive preservation. All adolescents experience some degree of cognitive change as a normal consequence of hormonal changes, such as:

•  poor problem solving and judgment

•  impaired reasoning skills 

•  memory and attention difficulties

•  mood swings

•  disinhibited thought and actions, an inability to judge what is private and what may be appropriate in public settings

•  inability to read social cues from others and poor ability to manage relationships

These common problems may be magnified as a result of brain injury, making management very difficult for parents as well as extended family, teachers and peers whom, for lack of understanding, often choose to distance themselves from the adolescent.

Promoting Healthy Sexual Attitudes

Sex education is vital for developing wholesome attitudes about sex. All instruction should be clear and structured and leave the adolescent knowledgeable about body parts, sexual acts, safe sex and awareness that sexual health is not just intercourse. The goal is to help adolescents with brain injuries understand that although they may have some residual cognitive and physical deficits, they are still sexual beings. They must feel free to communicate with family, providers and others appropriately and comfortably about sexual issues and have opportunities to meet with and form relationships with others as appropriate. Families must be vigilant about monitoring abuse in all settings particularly when others besides the family are providing care. All adolescents with brain injury need help in realizing their dream to be like their peers.

References:

Barton, B, Tepper, M. Adolescence, Brain Injury, and Sexuality: Promoting Sexual Health. Brain Injury/Professional. 7(1) 18-20, 2010.

Recommended reading:

This Fact Sheet is based on an article: Adolescence, Brain Injury, and Sexuality: Promoting Sexual Health. Brain Injury/Professional. 7(1) 18-20, 2010. Brain Injury/Professional is the largest professional circulation publication on the subject of brain injury and is the official publication of the North American Brain Injury Society (NABIS). Brain Injury Professional is published jointly by NABIS and HDI Publishers. Members of NABIS receive a subscription as a benefit of NABIS. Visit www.nabis.org to order the entire issue or become a member.

Books on brain injury symptoms, treatment and recovery are available from Lash and Associates Training/Publishing, Inc.

Tool Kit for Life Care Planners and Case Managers on Teens with Brain Injury

This Tool Kit provides families with…

• Information on cognitive and behavioral issues for teenagers with brain injury.
• Strategies to help adolescents with social skills and peer relationships
• Planning for transitions within school and after high school

By Carolyn Rocchio

Brain injury rehabilitation overlooks sexual impact of trauma

One of the common consequences of traumatic brain injury (TBI) is sexual dysfunction. Unfortunately addressing sexual issues as a component of rehabilitation is often overlooked for a variety of reasons.

“Sexuality is an integral part of the human experience” (Sander). We are all sexual beings and sexuality is part of our life experience. Social mores and cultural differences make sexuality a taboo issue in some societies. Many therapists and other direct care providers in hospital and rehabilitation settings are untrained about sexuality and persons with disabilities. Their personal values often interfere with their ability or comfort level discussing the topic. When sexuality is overlooked as part of rehabilitation, sexual dysfunction can become an issue that is very difficult for families to understand.  Social isolation, common for persons after TBI, limits opportunities for developing meaningful relationships. 

Decreased dollars for rehabilitation services add to the problem.  With shorter number of days for care in rehabilitation programs to address the life altering effects of brain injury, such as mobility and cognitive impairments, there may be little time to discuss sexuality. Reimbursement for extended psychological and counseling has been all but eliminated from many insurance policies.

Hyposexuality and hypersexuality after brain injury

Sexual dysfunction after a brain injury may take the form of hyposexuality, as in loss of libido and lack of satisfaction. Hypersexuality can be equally problematic, but far more troubling to manage in rehabilitation and community settings. Hypersexuality manifests as inappropriate behaviors, such as verbal remarks, touching one self or others, exposing genitals, and sexual demands that are considered aberrant. These issues appear equally between men and women.

Cognitive, physical and emotional changes affect sexual functioning   

Injury to structures of the brain can result in varying degrees of dysfunction. Systemically a complex set of changes can occur affecting emotions, cognition, behavior, and mobility. Physical changes may alter the ability to enjoy satisfaction, particularly when there are residual physical changes such as:

• spasticity
• hemiparesis
• ataxia
• movement disorders 
• decreased balance    

Body positioning, balance, and arousal may require greater patience and guidance from partners. In addition, damage to the frontal or temporal lobes of the brain can affect the endocrine system and neurochemistry, resulting in such emotional responses as apathy, disinhibited behaviors, impulsivity, as well as physical changes in hormone levels.

Even more disabling are the cognitive changes. The frontal and temporal lobes of the brain regulate sexual functioning and are more frequently injured in car crashes and falls causing the brain to bounce around in the skull striking the bony protuberances on the inside of the skull. This often results in the following difficulties in maintaining or initiating satisfying sexual experiences: 

• decreased empathy for others
• inability to understand nonverbal cues (feedback)
• impaired social interaction with partners (inappropriate verbal/physical responses)
• difficulty self monitoring (can become aggressive)

Emotional issues, such as depression, can have a negative effect on sexuality. Some persons with brain injury may exhibit a child-like dependency on their partner.  Self centeredness in the person after TBI may result in exclusion of the views of others.  Any of these can sabotage  relationships. Medications commonly prescribed to control seizures and other residual medical and psychological complications of TBI can create additional problems with sexual functioning.

Rehabilitation professionals do not routinely treat or even discuss sexuality with patients for some of the following reasons: 

• family members’ discomfort discussing the subject
• therapists’ lack of training about sexuality
• lack of reimbursement for services
• level of cognitive recovery at time of individual’s discharge

How, when and what information on sex and sexuality should be addressed?

There is probably no perfect time that applies to all individuals due to the uniqueness of TBI, the person’s age and life situation, and the individual’s interest in resuming or initiating sexual activity. It is important that rehabilitation programs have printed materials for discussions with the patient, if appropriate during the inpatient stay.  They should also be included as part of a discharge plan to help guide discussion once the person is in the community and indicates interest and readiness for sexual activity.

These materials should include:

• general discussion of the many ways brain injury or TBI can affect sexual functioning, i.e., emotionally, physically, cognitively, and psychologically
• safe sex practices, HIV/AIDS, birth control, and sexually transmitted diseases
• methods and devices for self stimulation in the absence of a partner
• community resources should further treatment be required

With proper guidance, family and community support, most survivors of TBI will find ways to express themselves sexually in a responsible manner as part of the experience of their humanness.

References

Sander, AM. Integrating Sexuality into Traumatic Brain Injury Rehabilitation. Brain Injury/Professional. 7(1) 8-12, 2010

Recommended reading

This Fact Sheet is based on an article: Integrating Sexuality into Traumatic Brain Injury Rehabilitation. Brain Injury/Professional. 7(1) 8-12, 2010. Brain Injury/Professional is the largest professional circulation publication on the subject of brain injury and is the official publication of the North American Brain Injury Society (NABIS). Members of NABIS receive a subscription as a benefit of NABIS. Visit www.nabis.org to order the entire issue or join.

For more information, see:  

Sexuality after a Person has a Brain Injury

By David Strauss, Ph.D.

Corrects myths about sexuality among adults with disabilities and brain injuries. Gives strategies for families and caregivers on how to respond to sexual behaviors, disinhibition and changes in judgment and social skills.

Brain Injury It is a Journey

By Flora Hammond, M.D. and Tami Guerrier, B.S., Editors

This brain injury book for families explains consequences of traumatic brain injury and gives strategies for coping with changes in the survivor’s physical abilities, memory, attention, thinking and emotions. 

Brain Injury Magazine

These Fact Sheets are based on special issues published by Brain Injury Professional.

Back issues are available by calling the publisher HDI at (800) 321-7037. 

Brain Injury/Professional is the largest professional circulation publication on the subject of brain injury and is the official publication of the North American Brain Injury Society (NABIS). Members of NABIS receive a subscription as a benefit of NABIS. Visit www.nabis.org to become a member.

By Carolyn Rocchio

Treatment for cognitive functioning after brain injury

Cognitive rehabilitation is a “systemically applied set of medical and therapeutic services designed to improve cognitive functioning and participating in activities that may be affected by one or more cognitive domains” (Katz, Ashley, et al, 2006).

There is no longer any doubt about the effectiveness of cognitive and behavioral rehabilitation   following brain injury. However, insurance companies too frequently move patients with brain injury out of the medical model more rapidly for cost savings.  Children and youth comprise a very low percentage of those who receive any meaningful extended rehabilitation of functional impairments.  Most children and youth are discharged home to the care of parents and school systems.

Children are not “little” adults…their brains are still developing

During the developmental years, the child’s brain is not yet fully formed.  Nor is it as sophisticated as the brain of an adult.  In these developmental years which extend through the late teens and early twenties, children are expected to reach a number of milestones as they grow and mature.  A brain injury interrupts the normal developmental process.  This can subsequently have an impact on the child’s academic achievement and ability to socially interact with family and peers.  In most cases, the burden and responsibility of follow up care and remediation of the child’s deficits fall to parents and educators.

Parents are usually neither educated nor prepared to recognize and assess how the injury has affected their child’s learning capabilities and interactions within the family.  Yet parents ultimately become the case managers for their child’s follow-up services at school and in the community.  Educational systems vary significantly nationwide; however, all must comply with the Individuals with Disabilities Education Act which is the foundation for special education in all states. 

The student with a brain injury will have changing educational needs as the latent effects of the trauma to the brain emerge over time.   So it is important for educational programs for these students to include check points and flexibility to address the student’s emerging and developing special needs after an acquired brain injury.  Parents and educators can be most effective when they work as partners on behalf of the child and student. 

Cognitive rehabilitation for children requires special considerations

The following key factors must be considered when designing and providing cognitive rehabilitation for children and youth:

• Effects of the injury may be delayed; the younger the child when injured, the more likely that expected developmental milestones may be delayed or unattained.
• Youngsters with brain injuries need different approaches to learning to compensate for cognitive deficits in school.
• Increased guidance and cognitive models of rehabilitation can provide necessary checkpoints and flexibility to support optimal maturation when brain injury negatively impacts the child’s interactions with family and peers.
• Dual roles of parenting and case management increase stress for parents.  They require educational resources, information and support to successfully assist with the child’s transition from the medical and rehabilitation arena to the school system and community.

Transition from hospital to school after brain injury is critical

Ideally, day cognitive rehabilitation programs resembling school-like environments can provide children with individually designed approaches to academic achievement with feedback from therapists experienced in brain injury rehabilitation.  These programs facilitate the child’s transition from medical to school systems and the community.  This transition is critical as schools focus on learning and achievement, not on remediation of cognitive deficits.  A few hospital to school transition programs for children with acquired brain injuries exist within some large urban pediatric medical centers; however, overall their availability ranges from scarce to non-existent in local communities.  

Cognitive rehabilitation for children requires partnerships with parents and monitoring the brain injury’s effects on the child’s development and academic achievements.  The future holds the promise of greater interventions to enhance the progress of children with brain injuries. Research that is more focused on longitudinal studies can provide the information that will ultimately lead to the development of more comprehensive models of care for children with acquired brain injuries.

References

Katz, DI, Ashley, MJ, O’Shanick, GJ & Connors, S. Cognitive Rehabilitation: The evidence for funding and case for advocacy in brain injury. Retrieved January 16, 2009 from Brain Injury Association of America website at www.biausa.org/policyissues.htm.

Haarbauer-Krupa, J (2009).  Cognitive Rehabilitation for Children and Youth: Moving toward collaborative partnerships. Brain Injury/Professional 6(2) 20-22.

Recommended reading

This Fact Sheet is based on a special issue of Cognitive Rehabilitation: Efficacy and Best Practice of the Brain Injury/professional (vol. 6, issue 2) 2009.

Brain Injury/professional is the largest professional circulation publication on the subject of brain injury and is the official publication of the North American Brain Injury Society (NABIS). Brain Injury/professional is published jointly by NABIS and HDI Publishers.  Members of NABIS receive a subscription as a benefit of NABIS. Visit www.nabis.org to join.