Pediatric Brain Injury Emotional Effects on Children and Youth Strategies for Support Deborah Ettel,...

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Pediatric Brain Injury Emotional Effects on Children and Youth Strategies for Support Deborah Ettel, PhD [email protected] Center on Brain Injury Research & Training

Transcript of Pediatric Brain Injury Emotional Effects on Children and Youth Strategies for Support Deborah Ettel,...

Pediatric Brain Injury

Pediatric Brain Injury Emotional Effects on Children and Youth Strategies for Support

Deborah Ettel, [email protected] on Brain Injury Research & TrainingOverviewIncidence/Prevalence of Pediatric BIIn the NewsTrauma Physiological sequelae Psychological sequelaeTrauma + brain injury: children, adolescents Cognitive, Behavioral, Emotional changes Risk Factors

Strategies for Support

Incidence and prevalenceTBI: This is a low incidence disability why focus on it?BIAA

Brain injuries are not low incidence NATIONWIDE1.4 -1.7 million Americans sustain a brain injury each year50,000 do not survive their injuries235,000 are hospitalized1.1 million are treated and released from emergency departments following brain injuryAnnual Incidence of TBI with disabilityAN ESTIMATED 124,000 American civilians5 NATIONWIDE- Annual BI Incidence: Children ages 0-142,685 deaths37,000 hospitalizations435,000 emergency department visits (accounting for over 90% of emergency department visits in children 0-14 years old)6Under-identification of children with TBI19% need support for longer-term disability62,000 hospitalized for TBI each year

An estimated 19% of those will need spec education supports in school, persistent symptoms: 11, 780 (source for estimate; CDC?) taken from census determinations of those with TBI who have long-term or life-long disability, needs for support, SSI, vocational help, etc.

But lets look over a period of Kindergarten through high school : those students dont go away after one year, they may continue to have needs for support, and now at year 2 another 11,780 students are added to the population of students with TBI needing educ supports. And another next year. Over time, from K 12 this would include 153,140 students.

So, how many students currently receive spec educ supports? 23,805 about 16% of the number of students we would expect to need spec education supports -

7Reframed, the numbers nauseate. In America alone, so many people become permanently disabled from a brain injury that each decade they could fill a city the size of Detroit....Seven of these cities are filled already. A third of their citizens are under fourteen years of age.

From Head Cases, Stories of Brain Injury and its AftermathMichael Paul Mason2008 published by Farrar, Straus and Giroux

8In the News: Risk for psychological problems after brain injuryHistory of multiple concussions/ Chronic traumatic encephalopathy(CTE)

Disease of the brain believed to be caused by repeated head trauma resulting in large accumulations of tau proteins, killing cells in regions responsible for mood, emotions, & executive functioning.

Terry Long, NFL player, committed suicide June 7, 2005 by drinking anti-freeze after struggle with severe depression.Andre Waters, NFL player, committed suicide November 20, 2006 by gunshot wound after suffering from depression.Chris Benoit, Professional wrestler, committed suicide after murdering his wife and child.Junior Seau committed suicide with a gun shot wound to the chest in 2012 at the age of 43. National Institutes of Health (NIH) concluded that Seau suffered from chronic traumatic encephalopathy (CTE)

In the News:Risk for psychological problems after brain injury? Domestic violence, child abuse

Mindy McCready

Sarah Jane Brain Foundation, Patrick DonohueFather, FounderPublic expectation of educators?Know something about working with children , families with brain injuryTraumaThe First Word in Traumatic Brain Injury

Trauma: Physiological sequelaeTraumatic injury is a disease process unto itself. Biochemical changes occur throughout the body in response to the traumatic injuries, including in organs distant from, and seemingly unconnected to, the site of injury, Steven E. Ross, MD, Director of the Level I Trauma Center at Cooper University Hospital. Emotional psychological sequelae of traumaTraumatic events are extraordinary, not because they occur rarely, but rather because they overwhelm the ordinary human adaptations to life. Judith Herman, Trauma and Recovery

That's what trauma does. It interrupts the plot. You can't process it because it doesn't fit with what came before or what comes afterward. In most of our lives, most of the time, you have a sense of what is to come. There is a steady narrative, a feeling of "lights, camera, action" when big events are imminent. But trauma isn't like that. It just happens, and then life goes on. No one prepares you for it. Jessica Stern, Denial: A Memoir of Terror

Emotionally traumatizing events 3 common elementsIt was unexpected

The person was unprepared There was nothing the person could do to prevent it from happening.

Sudden, painful, potentially life-threatening eventsAcute phase: What happens when people experience trauma?Shock and denial

Normal protective reactions.

Shock : a sudden, often intense disturbance of your emotional state, leaves you feeling stunned or dazed.

Denial: not acknowledging that something very stressful has happened, or not experiencing fully the intensity of the event. You may feel numb or disconnected from life.Amer Psychological AssocHow we respond to traumaAmerican Psychological AssociationFeelings : intense and unpredictable - more irritable than usualChanges in thoughts & behavior patterns Repeated and vivid memories of the eventFlashbacks may occur for no apparent reasonRecurring emotional reactions - Anxiety on anniversaries of the eventInterpersonal relationships strained - More conflict, frustration, misunderstandingsPhysical symptoms - May have headaches, stomachaches, body painTraumatic stress responsesRe-experiencingIt pops into my mind.Feels like its happening again.I get upset when something reminds me of it.

AvoidanceI block it out - try not to think about it.I try to stay away from things that remind me of it.Traumatic stress responsesIncreased arousal/hypervigilanceI am always afraid something bad will happen.I jump at any loud noise.I cant concentrate, cant sleep.

DissociationIt felt unreal -- like I was dreaming.I cant even remember parts of it.Survivor [family, friends]Complicated grief: numbness, detachment from others, difficulty in accepting lost of skills, abilities, memory surrounding event (Worden, 2009)Ambiguous loss: psychological loss of parts of previous life, function, memory, participation (Boss, 2006); a loved one is physically present but psychologically absent Boss, 2004)Persistent ambiguity causes: confusion, immobilization, exhaustion, continual state of heightened awareness, fight-flight preparedness

Secondary trauma: emergency, medical events and procedures: Why do medical events potentially lead to traumatic stress? Challenge beliefs : the world is a safe place; reminders of ones own (and childs) vulnerability.

Can be a realistic (or subjective) sense of life threat.

High-tech, intense medical treatment may be frightening, & child or parent may feel helpless.

Uncertainty about course and outcome.

Pain or observed pain often involved. Exposure to injury or death of others can occur.

Traumatic stress disorders after pediatric injuryMost children (and parents) do well psychologically after an injury some develop PTSD symptoms that persist for many yearsAlmost 1 in 5 injured children and parents developed PTSD symptoms that lasted more than four mo. and caused impairment in their daily lives. ASD symptoms: children 22%, PTSD symptoms : children 17%

Winston, Kassam-Adams, et al. (2003). Screening for risk of persistent posttraumatic stress in injured children and their parents. JAMA 290: 643-649. months and cause distress.

Kids comments on traumaI thought I was going to die. Thought I must really be hurt. I was so scared because my mom was not there.Doctors crowded around & stuck stuff on me & cut my clothes off -- I didnt know what was happening.

In the hospital, in the middle of the night they started pumping bright red stuff into me. They were wearing protective clothing -- that was pretty horrifying.

Then I got sick a couple of hours after and I urinated bright red. Theres nothing normal about that.

It all happened so quickly. I was out of it and in pain. The ride in the ambulance was awful. I was given the first treatment without being told what was going on that upset me for a long time after that.

Re-living traumatic stress Even now some things bring it all back. Some smells, like being at the hospital, the smell of metal pipes; seeing other people that are sick. I only need one thing to happen and then the day's practically useless.

Specific sequelae of traumatic brain injury in childrenTrauma + Brain Injury

BRAIN INJURY: Physical, physiological processesBrain tissue reacts to trauma -> with biochemical, physiological responses. Substances within the cells , flood the brain causing more damage, destroy more brain cells = secondary cell death.In severe injuries, may have loss of consciousness (LOC): a few minutes, hours, several weeks ,or even months. Lengthy LOC = coma.Negative changes in respiration and motor functions.Neurons do not mend - new nerves do not grow in ways that lead to full recovery. Some areas of brain remain damaged, and the functions controlled by those areas may become challenges for person

Simplified summary of traumatic brain injury (TBI)-associated cellular injury cascades. Events are triggered at time of injury full process continues over hours to weeks after injury.A poh toe sis no second p pronounced - programmed cell death30

Brain regions vulnerable to damage in a typical traumatic brain injury (TBI); (B) Relationship of vulnerable brain regions to common neurobehavioral sequelae associated with TBI. Bigler E. Structural imaging In: Silver J, McAllister T, Yudofsky S, eds. Textbook of Traumatic Brain Injury. Washington DC: American Psychiatric Press; 2005:87Complex interdependencies, processes influence functional outcomesCompared post-injury psychiatric disorders children with TBI and OI:

Novel psychiatric disorder occurred significantly more frequently in the TBI (32/65; 49%) than the OI (7/53; 13%) group.

Not accounted for by: pre-injury lifetime psychiatric status pre-injury adaptive functioning pre-injury family adversity family psychiatric history socioeconomic status injury severity, or age at injury.Max, Wilde, Bigler, MacLeod, Vasquez, Schmidt, Chapman, Hotz, Yang, Levin, Psychiatric Disorders After Pediatric Traumatic Brain Injury: A Prospective, Longitudinal, Controlled Study . The Journal of Neuropsychiatry and Clinical Neurosciences 2012;24:427-436. 10.1176/appi.neuropsych.12060149

McKinlay, Audrey PhD; Grace, Randolph PhD; Horwood, John MSc; Fergusson, David PhD; MacFarlane, Martin FRANZCR Adolescent Psychiatric Symptoms Following Preschool Childhood Mild Traumatic Brain Injury: Evidence From a Birth Cohort

At age 14 to 16 years, children hospitalized for MTBI during preschool years were significantly more likely to show symptoms of:

Attention deficit/hyperactivity disorder (odds ratio = 4.2),Conduct disorder/oppositional defiant disorder (OR= 6.2), Substance abuse (OR= 3.6)Mood disorder (OR= 3.1) but not anxiety disorder.

Preschool MTBI associated with persistent negative effects on psychosocial development. Preschool years vulnerability period following MTBI.

Preschool vulnerable time for MTBISocial Function in Children and Adolescents after Traumatic Brain Injury: A Systematic Review 19892011 Rosema, Crowe, Anderson. Journal of Neurotrauma. May 1, 2012, 29(7): 1277-1291. doi:10.1089/neu.2011.2144.

Social dysfunction after brain injuryWHY? Social skills not localized, mediated by an integrated neural network. Neural networks susceptible to disruption with TBI. Early development, a brain injury can disrupt this neural network while it is in the process of being established, resulting in social dysfunction.

RISK FACTORS for SOCIAL DIFFICULTIES: Younger age at insult pathology to frontal regions and the corpus callosumsocial disadvantage family dysfunctionPossible Changes-Personality and Behavioral ...MD TBI ProjectDepressionSadness, hopelessness, loss of enjoyment, withdrawal, isolation, Emotional control problems

Mood swings, labilityEmotion may not match occasion (laughing at something sad)Emotions not always tied to events, triggers, seem random

Social skills problems

Inappropriate behaviorInability to inhibit remarksInability to recognize social cues, facial expressionsProblems with initiationReduced self-esteemDifficulty relating to othersDifficulty maintaining relationshipsDifficulty forming new relationshipsStress/anxiety/frustration and reduced frustration tolerancePossible Changes: Personality and Behavior MD TBI ProjectLISTEN.LISTEN.LISTEN.Top three recommendations for anyone working with a child or family with brain injury:

You will not be heard until the family knows they have been heard.Your first meeting should be 5 to 1 ratio of listening to talking.Time spent building a trusting relationship early will save time, increase progress & efficiency later Making up the spelling test is not the most important thing on the parents agenda

Acute phaseTrauma interferes with attention, comprehension, memory, cognition, executive function: organizing, planning Parents often say medical personnel didnt tell them anything they likely did - but dont remember it

Parents key resources for childs emotional recovery after injuryGOOD TO KNOW:Parent and child reactions to injury connected -- severity of ASD or PTSD symptoms is correlated between child and parent.Hard for parents to assess childs psychological responses to injuryMay under- or over-estimate childs distress compared to their childs own report of symptoms.Strategies for SupportAcute phase Post-acute phase

Complex influences on child recovery

Harvey S. Levin, PhD , Gerri Hanten, PhD. Department of Physical Medicine and Rehabilitation, Baylor College of Medicine, Houston, Texas

9 things NOT to say to a person with a brain injury

1. You seem fine to me.2. Maybe youre just not trying hard enough (youre lazy).3. Youre such a grump!4. How many times do I have to tell you?5. Do you have any idea how much I do for you?6. Your problem is all the medications you take.7. Let me do that for you.8. Try to think positively.9. Youre lucky to be alive.

Marie Rowland, PhD, EmpowermentAllyBrainLineAPA trauma guidelines : Acute phaseImmediately after trauma: Match care to child needs and phase of recoveryAttend first to basic needs: safety, shelter, reuniting familyAssess initial responses and arrange to follow up over timeHelp parents to: accurately assess childs symptoms and needs help child manage psychological symptoms and pain promote positive social interactions for child manage their own reactionsSupport parent, family, and community efforts to:provide safe, developmentally appropriate, culturally responsive recovery environmentreduce ongoing exposure to stressors/secondary traumasreestablish normal roles and routinesactivate support among kinship networks and spiritual and community systemsAPA guidelines for tx children youth after traumatic event(s): Post-acute phaseAny time after traumaAllow children to express feelings if they want toHelp parents and other key adults to be aware of and manage their own reactions, listen to and understand the child's reactionsAssess risk factors for persistent adverse reactionsAssess needs that may warrant intervention, such as severe or persistent distress, numbing, or impairment , reduced capacity of family/community to support child, self-destructive or violent behaviors APA trauma response guidelinesBe Aware of Potential PitfallsAssuming that all children will respond to trauma in the same wayPathologizing early distress or reactionsConveying the message that trauma exposure inevitably results in long-term psychological damageAssuming that all trauma-exposed children will have long-term damage or need treatmentCreating situations in which trauma-exposed children have little choice or controlForcing children or parents to tell their story (but remember to listen carefully when they do)Ignoring your own stress from trauma-focused clinical work Post-injuryWhat types of emotional, behavioral, psychiatric symptoms, or disorders?Anxiety: Some causes and strategies for reducingCaused by difficulty reasoning, concentrating when prob- solving, feeling overwhelmedToo many demands, time pressure, Harder in situations with high demand for attention & processing crowded environments, heavy traffic, lots of noise

TO REDUCE: Reduce environmental demands, unnecessary stress, Modify schedule, early dismissal from class, more time between classes, peers helper Reassurance, structured activities, counseling, systematic desensitization, peer helper

Acute Stress Symptoms or DisorderPost-Traumatic Stress Disorder

Frequent monitoring by supportive staff member Regular check-in plan with family All staff involved with student , knowledge of potential signs, symptoms of PTSD Action plan for acute symptoms, nurse, counselor, family Modifications allow for breaks from class

DepressionWHAT? Feeling sad, worthless, sleep or appetite disruption (too much, too little), loss of interest and pleasure , difficulty concentrating, thoughts of death, suicideStruggles with adjustment to temporary or lasting disability, Biochemical and physical changes in brain from injury

TO DO:Set up check-in w/supportive staff member as neededDiscuss psych evaluation with family, pediatrician, psychiatrist, counselorFamily support, counseling, cog behavior therapy, behavioral activation, create opportunities for positive social interactionFrequent monitoring signs of self-harm, aggression, suicidal ideation

Temper outbursts and irritabilityShort fuse, Flying off the handle easily, being irritable or having a quick temper.

Children and adolescents with TBI may frequently be irritable.

May yell, use bad language, throw objects, slam fists into things, slam doors, or threaten or hurt family members or others.

What may cause temper outbursts and irritability?Injury to parts of brain controlling emotional expressionFrustration, dissatisfaction with changes in life from injury ; loss of skills, friends, independence.Feeling isolated, depressed, misunderstoodDifficulty concentrating, remembering, expressing oneselfor following conversations may cause frustrationTiring easilyPain.Hart & Ciccerone 2002What can be done about temper problems?

Reduce stress, decrease irritating situations, remove some of the triggers for irritabilitySet up the child for success Teach basic anger management skills: self calming strategies, mindfulness stress reduction, relaxation, deep breathing cues, better communication methods, instructional sequence for high ratio success (mastery learning, direct instruction) After outburst, when calm, discuss possible triggers, problem solve alternate acceptable responses set stage for success, What else could you do if this happens? Then, model, practice, & support appropriate routines for problem-solving What are 2 things you could do if you need help? Ex: raise hand, take a break, ask a peerWork with a psychologist, mental health professional familiar with TBI issues, including medicationsChanging your own and others reactions to temper outburstsDont take it personally it really isnt about you. What looks like willfulness, challenging your authority may be due to brain injury: difficulty initiating, attention control or memory problems, inappropriate social skill

Learn and use de-escalating strategies, firm and calm communication/rules about acceptable behavior, non-confrontational attitude; neutral body language, non-punitive, dont box child in a corner during crisis, allow face-savingUse good behavior management strategies for unacceptable behavior (keep self and others safe, tell child specifically what is unacceptable, provide child choices, dont argue or engage, speak in a calm voice, dont give in to demands etc.)INTERVENTION for emotional sequelae from pediatric TBI?

Limited high quality, experimental research on intervention efficacy and effectiveness for emotional sequelae of pediatric TBI

Evidence-based interventionBetter tx outcomes: Cognitive behavioral therapy Family-based therapy, family involvement, parent coaching, intensive therapy Psycho-pharmacology - medicationsWade and YeatesExample: Shari Wade, Keith Yeates interventionsOnline Family Problem Solving RCT, intensive therapy support, parent coaching, video, 14 direct intervention sessions, Improvement in internalizing difficulties . Most benefit to children of lower SES, and those age > 11 yrs. Wade SL, Oberjohn K, Burkhardt A, Greenberg I. J Head Trauma Rehabil 2009; 24: 23947.

Trauma-Focused Cognitive Behavior Therapy[Evidence-based]TF-CBT: works for children who have experienced any trauma, including multiple traumas. is effective with children from diverse backgrounds. works in as few as 12 tx sessions. has been used successfully in clinics, schools, homes, residential treatment facilities, and inpatient settings. works even if there is no parent or caregiver to participate in tx works for children in foster care. has been used effectively in a variety of languages and countries2 goals you can help children and adolescents achieveResilienceAbility to experience disruptive event, life-threatening and continue to maintain relatively stable life, with flexibility

Self-determination Taking charge of ones own life to the extent possible, setting personal goals for recovery, independence, future

Suggested readings: Reviews and SummariesHorowitz L, Kassam-Adams N, & Bergstein J. (2001). Mental health aspects of emergency medical services for children: Summary of a consensus conference. Journal of Pediatric Psychology, 26: 491-502.Kassam-Adams N & Fein J. (2003). Posttraumatic stress disorder and injury. Clinical Pediatric Emergency Medicine, 4: 148-155.Saxe, G, Vanderbilt, B, Zuckerman, B. (2003). Traumatic stress in injured and ill children. PTSD Research Quarterly, 14 (2): 1-7. Available at www.ncptsd.org/publications/rq/rq_list.htmlTranslational research Neurobiological consequences of traumatic brain injury Thomas W. McAllister, MD Dialogues Clin Neurosci. 2011;13:287-300.Adolescent Psychiatric Symptoms Following Preschool Childhood Mild Traumatic Brain Injury: Evidence From a Birth Cohort McKinlay, Audrey PhD; Grace, Randolph PhD; Horwood, John MSc; Fergusson, David PhD; MacFarlane, Martin FRANZCR Section Editor(s): Caplan, Bruce PhD, ABPPZatzick, Df, & Grossman, DC, Association between traumatic injury and psychiatric disorders and medication prescription to youths aged 10-19, Psychiatry Service, 2011, 62(3): 264-271Jonathon Silver MD Psychiatric News | December 07, 2012 Volume 47 Number 23 page 26-28 American Psychiatric Association Kimberley A. Ross1, Tom McMillan1, Tom Kelly2, Ruth Sumpter1, Liam Dorris1,3*Friendship, loneliness and psychosocial functioning in children with traumatic brain injury, Brain Injury, 2011, Vol. 25, No. 12 , Pages 1206-1211 (doi:10.3109/02699052.2011.609519) Yvette Alway , Adam McKay , Jennie Ponsford & Michael Schnberger (2012): Expressed emotion and its relationship to anxiety and depression after traumatic brain injury, Neuropsychological Rehabilitation: An International Journal, 22:3, 374-390RossKA . Dorris, L McMillan, T 2011, A systematic review of psychological interventions to alleviate cognitive and psychosocial problems in children with acquired brain injury Developmental Medicine & Child Neurology a 2011C. Konrad, A. J. Geburek, F. Rist, H. Blumenroth, B. Fischer, I. Husstedt, V. Arolt, H. Schiffbauer and H. Lohmann (2011). Longterm cognitive and emotional consequences of mild traumatic brain injury. Psychological Medicine, 41, pp 11971211 doi:10.1017/S003329171000172861Resources continuedDikmen SS, Bombardier CH, Machamer JE, Fann JR, Temkin NR (2004). Natural history of depression in traumatic brain injury. Archives of Physical Medicine and Rehabilitation 85, 14571464.Koponen S, Taiminen T, Portin R, Himanen L, Isoniemi H, Heinonen H, Hinkka S, Tenovuo O (2002). Axis I and II psychiatric disorders after traumatic brain injury : a 30-year follow-up study. American Journal of Psychiatry 159, 13151321.Temkin NR, Corrigan JD, Dikmen SS, Machamer J (2009). Social functioning after traumatic brain injury. Journal of Head Trauma Rehabilitation 24, 460467.Vanderploeg RD, Curtiss G, Luis CA, Salazar AM (2007). Long-term morbidities following self-reported mild traumatic brain injury. Journal of Clinical and Experimental Neuropsychology 29, 585598. The Psychiatric Sequelae of Traumatic Injury Richard A. Bryant, Ph.D.; Meaghan L. O'Donnell, Ph.D.; Mark Creamer, Ph.D.; Alexander C. McFarlane, M.D.; C. Richard Clark, Ph.D.; Derrick Silove, M.D. Am J Psychiatry 2010;167:312-320. Spina, S., Ziviani, J., & Nixon, J. (2005). Children, brain injury, and the resiliency model of family adaption. Brain Impairment, 6, 33-44.Medical Events & Traumatic Stress in Children and Families. Center for Pediatric Traumatic StressWinston, Kassam-Adams, et al. (2003). Screening for risk of persistent posttraumatic stress in injured children and their parents. JAMA 290: 643-649.Center for Pediatric Traumatic Stress The Childrens Hospital of Philadelphia Room 1492, 3535 Market34th Street and Civic Center Boulevard Philadelphia, PA 19104

www.cbirt.org