SOCIAL, EMOTIONAL, AND BEHAVIORAL FUNCTIONING OF CHILDREN EXPOSED TO MEDICAL TRAUMA: A THEORY OF HARDINESS

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SOCIAL, EMOTIONAL, AND BEHAVIORAL FUNCTIONING OF
CHILDREN EXPOSED TO MEDICAL TRAUMA A THEORY OF
HARDINESS

• Robert B. Noll, Ph.D.
• Director, Child Development Unit
• Medical Director for Behavioral Health

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ACKNOWLEDGEMENTS

• Vannatta, Gerhardt, Sheeber, Zeller,
  Reiter-Purtill
• Staff--UC Friendship Study
• Dahl, Szigethy, Rofey, Finder
• National Institute of Health
• American Cancer Society
• National Arthritis Foundation

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RESEARCH RATIONALE

• Improve clinical care
• Theory Stress and trauma

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STRESSFUL/TRAUMATIC LIFE EVENTS

• Random versus non-random
• Uncontrollable versus controllable
• GREATEST HARM
• Uncontrollable, randomly occurring
  stressful/traumatic life events

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IMPACT ON CHILDREN

• Social functioning
• Emotional well being
• Externalizing behavior (acting out)

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IMPACT ON PARENTS AND FAMILIES

• Parental mental health
• Child-rearing
• Family functioning
• Time management
• Siblings
• Economic issues

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STRESS / TRAUMA MODEL
Evolutionary Behavioral Health

• Illness Parameters
• Trauma to the CNS

Child Dysfunction
Childhood Chronic Illness

• Family Parameters
• Extreme Family Deprivation

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METHODOLOGY PROBLEMS

• Comparison groups
• Sampling
• Contextual factors
• Source of information
• Lack of longitudinal data

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SELECTION CRITERIA FOR COMPARISONS

• Classmate at school
• Race
• Gender
• Closest date of birth

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FAMILY DEMOGRAPHIC VARIABLES

• Family social prestige
• Family income
• Age of parents
• Number of children living at home
• Education of parents
• Marital status

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CHILD DEMOGRAPHIC VARIABLES

• Age
• Gender
• Race
• IQ

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PRIMARY DIMENSIONS OF SOCIAL FUNCTIONING

• What is the child like?
• Is the child liked?

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REVISED CLASS PLAYWhat is the child like?

1. Popular/Leader
2. Prosocial
3. Aggressive/Disruptive
4. Sensitive/Isolated

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ILLNESS ROLES

• Someone who is sick a lot
• Someone who misses a lot of school
• Someone who is tired a lot

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SOCIAL ACCEPTANCE Is the child liked?

• Three Best Friends
• Number of nominations
• Reciprocated friendships
• Like Rating Scale
• Overall social acceptance

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CHILDRENS EMOTIONAL WELL-BEING

• CHILDRENS REPORT (objective and projective)
• depression/anxiety
• loneliness
• self concept
• PARENTS REPORT
• depression/anxiety

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EVALUATION OF CHILD FUNCTIONING

• PERSPECTIVE OF MEDICAL CHART
• PERSPECTIVE OF OTHERS
• teachers
• peers
• parents (mothers and fathers)
• PERSPECTIVE OF SELF
• questionnaires
• projectives

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DATA ANALYSIS

• Comparison of group means
• Disease severity
• Age and gender as moderators

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GENERAL SELECTION CRITERIA

• 8-15 years of age
• No full time special education
• Treated at CCHMC

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CHILDREN WITH CHRONIC ILLNESS

• Neurofibromatosis (Type 1)
• Cancer (no primary CNS involvement)

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NF1

• 72 identified (medical records)
• 66 located and agreed to participate
• 60 schools participated
• 54 children with NF and 53 COMPs participate in
  home-based assessment

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NF1 DISEASE SEVERITY

• Overall medical severity
• Visibility/cosmetic involvement
• Neurologic involvement

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RCP TEACHER NOMINATIONS
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RCP ILLNESS ROLES PEERS
p lt .001
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RCP PEER NOMINATIONS
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SOCIAL ACCEPTANCE NF1
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DEPRESSION AND LONELINESS
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SELF PERCEPTIONS
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SELF PERCEPTIONS
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MOTHER REPORTS


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FATHER REPORTS
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DISEASE SEVERITY NF1

• OVERALL MEDICAL SEVERITY
• Sick a lot (peers)
• Attention (mothers and fathers)
• VISIBILITY/COSMETIC INVOLVEMENT
• RA rating

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NEUROLOGIC DISEASE SEVERITY
PEER REPORTS

• Social behavior
• Popular-Leader r -.32
• Sensitive-Isolated r .28
• Social acceptance
• Reciprocated friendships r -.28
• Like Ratings r -.32

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NEUROLOGIC DISEASE SEVERITY

PARENT REPORTS

• Externalizing symptoms (M F)
• Attention (M)
• Rhythmicity (M F)

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NEUROLOGIC DISEASE SEVERITY CHILD REPORTS

• Depression r .43
• Self concept Behavior r .30

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CONCLUSIONS CHILDREN WITH NF

• Social functioning
• Emotional well being
• Behavior (acting out)
• DISEASE SEVERITY
• Major role Neurological severity

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SELECTION CRITERIA CANCER

• No primary CNS involvement
• On chemotherapy
• 11 months since diagnosis

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DISEASE STATUS

• PRIMARY DISEASE
• leukemias
• lymphomas
• solid tumors

• OF PATIENTS
• 34
• 21
• 17

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CHILDHOOD CANCER ILLNESS SEVERITY

• Protocols
• Response to treatment

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RCP TEACHER NOMINATIONS
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RCP ILLNESS ROLES PEERS
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RCP PEER NOMINATIONS
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SOCIAL ACCEPTANCE CANCER
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SOCIAL ACCEPTANCE NF1
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DEPRESSION AND LONELINESS
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SELF PERCEPTIONS
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SELF PERCEPTIONS
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MOTHER REPORTS
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FATHER REPORTS
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DISEASE SEVERITY CANCER

• Peer reports Aggressive-Disruptive
• Peer reports Like Ratings
• Teacher reports Sensitive-Isolated

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CONCLUSIONS Children with Cancer on Chemotherapy

• Social functioning
• Emotional well being
• Behavior (acting out)
• Disease severity

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DEPRESSION AND YOUTH WITH CANCER

• 2 recent review papers
• DeJong Fombonne, 2006
• Noll Kupst, 2007
• Cross sectional/longitudinal Modest levels of
  depression regardless of methodology or reporting
  source

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ADDITIONAL COMPLETED WORKCROSS SECTIONAL

• Sickle cell disease (2 studies)
• Hemophilia (3 site investigation)
• Juvenile rheumatoid arthritis
• Juvenile migraines
• Siblings of children with SCD (Hgb SS)

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ADDITIONAL COMPLETED WORKLONGITUDINAL

• 2 year classroom follow ups
• Cancer
• Juvenile rheumatoid arthritis
• Sickle cell disease

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ADDITIONAL WORK COMPLETED NEUROLOGIC INVOLVEMENT

• Bone marrow transplant survivors
• Brain tumor survivors

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18 YEAR OLD FOLLOW UPS

• Cancer (N 51)
• Sickle Cell Disease (N 42)
• Juvenile Rheumatoid Arthritis (N 29)
• Comparison Peers (N 132)
• 79 of eligible young adults (CI)
• 83 of eligible comparisons

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YOUNG ADULT EMOTIONAL WELL-BEING

• YOUTH REPORT
• -PTSD
• -Depression/anxiety
• -Self concept
• PARENTS REPORT
• PTSD
• Depression/anxiety

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Depression // Dissociative Symptoms
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MOOD
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SELF PERCEPTIONS 18 Y/O FOLLOW UP
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SELF PERCEPTIONS 18 Y/O FOLLOW UP
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K-SADS-E (current)
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K-SADS-E (lifetime)
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Internalizing Symptoms Parent Report at Age 18
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Percentage of High School Students Who Felt Sad
or Hopeless, 1999 2007
1 No significant change over time
National Youth Risk Behavior Surveys, 1999 2007
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Percentage of High School Students Who Seriously
Considered Attempting Suicide, 1991 2007
1 Decreased 1991-2007, p lt .05
National Youth Risk Behavior Surveys, 1991 2007
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Percentage of High School Students Who Attempted
Suicide, 1991 2007
One or more times during the 12 months before
the survey. 1 No change 1991-2001, decreased
2001-2007, p lt .05
National Youth Risk Behavior Surveys, 1991 2007
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CONCLUSIONS YOUNG ADULTS AND CHRONIC ILLNESS

• Depression
• Anxiety
• Post traumatic stress
• Symptoms
• Disorder
• Self concept

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IF HARDINESS IS TYPICAL?WHY?
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STRESS / TRAUMA MODEL
Evolutionary Behavioral Health

• Illness Parameters
• Trauma to the CNS

Child Dysfunction
Childhood Chronic Illness

• Family Parameters
• Extreme Family Deprivation

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DARWIN ORIGIN OF THE SPECIES

• General evolutionary theory
• Evolution by natural selection
• Inclusive fit theory

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EVOLUTIONARY THEORY OF STRESS/TRAUMA KEY FEATURES

• Specific hypotheses
• Testable model
• Developmental focus
• Role of coping or medications
• Opportunities for behavioral health

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WHY EVOLUTIONARY THEORY?

• Uniting topics across disciplines of behavioral
  science
• Requires an understanding of the function of
  behavior

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ATTACHMENT THEORY STRANGER ANXIETY

• Cognitive
• Developmental
• Social
• Personality
• Clinical (psychiatry/psychology/DBP)
• Neuroscience

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FUNCTION OF THE BEHAVIORWHY DOES IT EXIST?

• Origins within ancestral conditions
• Humans as living fossils
• Adaptive significance

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DEVELOPMENTAL CONSIDERATIONS

• Adolescents take risks
• National Youth Risk Behavior Surveys, 1991 2007

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Leading Causes of Death Among Persons Aged 10
24 Years in the United States, 2003
National Youth Risk Behavior Surveys, 1991 2005
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Leading Causes of Death Among Persons Aged 25
Years and Older in the United States, 2003
National Youth Risk Behavior Surveys, 1991 2005
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CHILD/ADOLESCENT RISK TAKING BEHAVIORS

• Neurobiological development
• Risk taking
• What were you thinking?
• Protective effectchildren and teens live in the
  moment

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OPPORTUNITIES FOR PEDIATRICS

• National Institute of Mental Health
• Framework for prevention science
• Universal
• Selective
• Targeted
• National Institute of Mental Health. (1998).
  Priorities for prevention research.
• A national advisory council workgroup on mental
  health disorders
• prevention research. NIMH Bethesda, MD.

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BEHAVIORAL HEALTH SERVICES

• Empirically supported therapies
• Psychopharmacology
• Cognitive behavior therapies

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PEDIATRIC SUB-SPECIALTY CARE

• Coping and Wellness Center (SzigethyRO1 NIH
  Innovator Award)
• Polycystic Ovary Syndrome (Rofey--K 12)
• Objectives
• Improve physical health
• Reduce stigma
• Improve access
• Remove communication barriers

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PEDIATRIC PRIMARY CARE

• Child Family Counseling Center
• Partnership with CCP
• Empirically supported therapies
• Reduce stigma
• Improve access
• Eliminate communication barriers