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
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
RESEARCH RATIONALE
• Improve clinical care
• Theory – Stress and trauma
STRESSFUL/TRAUMATIC LIFE EVENTS
• Random versus non-random
• Uncontrollable versus controllable
GREATEST HARM
• Uncontrollable, randomly occurring stressful/traumatic life events
IMPACT ON CHILDREN
• Social functioning
• Emotional well being
• Externalizing behavior (acting out)
IMPACT ON PARENTS AND FAMILIES
• Parental mental health
• Child-rearing
• Family functioning
– Time management
– Siblings
• Economic issues
STRESS / TRAUMA MODEL
Evolutionary Behavioral Health
Illness Parameters
•Trauma to the CNS
Family Parameters
•Extreme Family Deprivation
ChildDysfunction
Childhood Chronic Illness
METHODOLOGY PROBLEMS
• Comparison groups
• Sampling
• Contextual factors
• Source of information
• Lack of longitudinal data
SELECTION CRITERIA FOR COMPARISONS
• Classmate at school
• Race
• Gender
• Closest date of birth
FAMILY DEMOGRAPHIC VARIABLES
• Family social prestige
• Family income
• Age of parents
• Number of children living at home
• Education of parents
• Marital status
CHILD DEMOGRAPHIC VARIABLES
• Age
• Gender
• Race
• IQ
PRIMARY DIMENSIONS OF SOCIAL FUNCTIONING
• What is the child like?
• Is the child liked?
REVISED CLASS PLAYWhat is the child like?
1. Popular/Leader
2. Prosocial
3. Aggressive/Disruptive
4. Sensitive/Isolated
ILLNESS ROLES
Someone who is sick a lot
Someone who misses a lot of school
Someone who is tired a lot
SOCIAL ACCEPTANCE Is the child liked?
Three Best Friends
– Number of nominations
– Reciprocated friendships
Like Rating Scale
– Overall social acceptance
CHILDREN’S EMOTIONAL WELL-BEING
CHILDREN’S REPORT (objective and projective)
– depression/anxiety
– loneliness
– self concept
PARENT’S REPORT
– depression/anxiety
EVALUATION OF CHILD FUNCTIONING
• PERSPECTIVE OF MEDICAL CHART
• PERSPECTIVE OF OTHERS– teachers
– peers
– parents (mothers and fathers)
• PERSPECTIVE OF SELF– questionnaires
– projectives
DATA ANALYSIS
• Comparison of group means
• Disease severity
• Age and gender as moderatorsmoderators
GENERAL SELECTION CRITERIA
• 8-15 years of age
• No full time special education
• Treated at CCHMC
CHILDREN WITH CHRONIC ILLNESS
• Neurofibromatosis (Type 1)
• Cancer (no primary CNS involvement)
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
NF1: DISEASE SEVERITY
• Overall medical severity
• Visibility/cosmetic involvement
• Neurologic involvement
RCP: TEACHER NOMINATIONS
-1-0.8-0.6-0.4-0.2
00.20.40.60.8
1
Popular-Leader Prosocial
Aggressive-Disruptive
Sensitive-Isolated
NF
COMP
* ** **
**p < .01; *p < .05
RCP ILLNESS ROLES: PEERS
-1-0.8-0.6-0.4-0.2
00.20.40.60.8
1
Sick a lotMisses a lot of
school Tired a lot
NF
COMP
*** ******
***p < .001
RCP: PEER NOMINATIONS
-1-0.8-0.6-0.4-0.2
00.20.40.60.8
1
Popular-Leader Prosocial
Aggressive-Disruptive
Sensitive-Isolated
NF
COMP
**
***
** p < .01; ***p < .001
SOCIAL ACCEPTANCE: NF1
-1-0.8-0.6-0.4-0.2
00.20.40.60.8
1
Three BestFriends
ReciprocatedFriendships Like Rating
NF
COMP
*******
**p < .01; ***p < .001
DEPRESSION AND LONELINESS
0
5
10
15
20
25
30
35
Depression Loneliness
NF
COMP
SELF PERCEPTIONS
1
1.5
2
2.5
3
3.5
4
Scholastic Social Athletic
NF
COMP
SELF PERCEPTIONS
1
1.5
2
2.5
3
3.5
4
Physical Behavior Global SelfWorth
NF
COMP
MOTHER REPORTS
45
50
55
60
65
70
Total BehaviorProblems
Externalizing Internalizing
NF
COMP
*p < .05; **p < .01
***
FATHER REPORTS
45
50
55
60
65
70
Total BehaviorProblems
Externalizing Internalizing
NF
COMP
DISEASE SEVERITY: NF1
OVERALL MEDICAL SEVERITYOVERALL MEDICAL SEVERITY
• Sick a lot (peers)
• Attention (mothers and fathers)
VISIBILITY/COSMETIC INVOLVEMENTVISIBILITY/COSMETIC INVOLVEMENT
• RA rating
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]
NEUROLOGIC DISEASE SEVERITY:
PARENT REPORTS• Externalizing symptoms (M & F)
• Attention (M)
• Rhythmicity (M & F)
NEUROLOGIC DISEASE SEVERITY: CHILD REPORTS
• Depression [r = .43]
• Self concept: Behavior [r = .30]
CONCLUSIONS: CHILDREN WITH NF
• Social functioning
• Emotional well being
• Behavior (acting out)
• DISEASE SEVERITY
– Major role: Neurological severity
SELECTION CRITERIA: CANCER
• No primary CNS involvement
• On chemotherapy
– 11 months since diagnosis
DISEASE STATUS
PRIMARY DISEASE– leukemias
– lymphomas
– solid tumors
# OF PATIENTS• 34
• 21
• 17
CHILDHOOD CANCER: ILLNESS SEVERITY
• Protocols
• Response to treatment
RCP: TEACHER NOMINATIONS
-1-0.8-0.6-0.4-0.2
00.20.40.60.8
1
Sociability-Leadership
Aggressive-Disruptive
Sensitive-Isolated
CANCER
COMP
**
**
**p < .01
RCP ILLNESS ROLES: PEERS
-1-0.8-0.6-0.4-0.2
00.20.40.60.8
1
Sick a lotMisses a lot of
school Tired a lot
CANCER
COMP
*** ***
***
***p < .001
RCP: PEER NOMINATIONS
-1-0.8-0.6-0.4-0.2
00.20.40.60.8
1
Sociability-Leadership
Aggressive-Disruptive
Sensitive-Isolated
CANCER
COMP
**
**p < .01
SOCIAL ACCEPTANCE: CANCER
-1-0.8-0.6-0.4-0.2
00.20.40.60.8
1
Three BestFriends
ReciprocatedFriendships Like Rating
CANCER
COMP
*
*p < .05
SOCIAL ACCEPTANCE: NF1
-1-0.8-0.6-0.4-0.2
00.20.40.60.8
1
Three BestFriends
ReciprocatedFriendships Like Rating
NF
COMP
*******
**p < .01; ***p < .001
DEPRESSION AND LONELINESS
0
5
10
15
20
25
30
35
Depression Loneliness
CANCER
COMP
SELF PERCEPTIONS
1
1.5
2
2.5
3
3.5
4
Scholastic Social Athletic
CANCER
COMP
**
**p < .01
SELF PERCEPTIONS
1
1.5
2
2.5
3
3.5
4
Physical Behavior Global SelfWorth
CANCER
COMP
MOTHER REPORTS
45
50
55
60
65
70
Total BehaviorProblems
Externalizing Internalizing
CANCER
COMP
FATHER REPORTS
45
50
55
60
65
70
Total BehaviorProblems
Externalizing Internalizing
CANCER
COMP
DISEASE SEVERITY: CANCER
• Peer reports: Aggressive-Disruptive
• Peer reports: Like Ratings
• Teacher reports: Sensitive-Isolated
CONCLUSIONS: Children with Cancer on Chemotherapy
• Social functioning
• Emotional well being
• Behavior (acting out)
• Disease severity
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
ADDITIONAL COMPLETED WORK
CROSS SECTIONAL
• Sickle cell disease (2 studies)
• Hemophilia (3 site investigation)
• Juvenile rheumatoid arthritis
• Juvenile migraines
• Siblings of children with SCD (Hgb SS)
ADDITIONAL COMPLETED WORK
LONGITUDINAL
2 year classroom follow ups
– Cancer
– Juvenile rheumatoid arthritis
– Sickle cell disease
ADDITIONAL WORK COMPLETED
NEUROLOGIC INVOLVEMENT
• Bone marrow transplant survivors
• Brain tumor survivors
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
YOUNG ADULT EMOTIONAL WELL-BEING
• YOUTH REPORT -PTSD
-Depression/anxiety
-Self concept
• PARENT’S REPORT– PTSD
– Depression/anxiety
Depression // Dissociative Symptoms
0
5
10
15
20
Depression A-DES
CHRONIC ILLNESS
COMP
MOOD
0
10
20
30
40
50
TMD DEP-DEJ TEN-ANX
CHRONIC ILLNESS
COMP
SELF PERCEPTIONS: 18 Y/O FOLLOW UP
1
1.5
2
2.5
3
3.5
4
Scholastic Social Athletic
CHRONIC ILLNESS
COMP
SELF PERCEPTIONS: 18 Y/O FOLLOW UP
1
1.5
2
2.5
3
3.5
4
Physical Behavior Global SelfWorth
CHRONIC ILLNESS
COMP
K-SADS-E (current)
0
2
4
6
8
10
Depression Anxiety
CHRONIC ILLNESS
COMP
K-SADS-E (lifetime)
0
2
4
6
8
10
Depression Anxiety
CHRONIC ILLNESS
COMP
Internalizing Symptoms: Parent Report at Age 18
45
50
55
60
65
70
Int-Mother Int-Father
C I
COMP
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
28.3 28.3 28.5128.528.6
0
20
40
60
80
100
1999 2001 2003 2005 2007
Pe
rce
nt
Percentage of High School Students Who Seriously Considered Attempting
Suicide, 1991 – 2007
1 Decreased 1991-2007, p < .05
National Youth Risk Behavior Surveys, 1991 – 2007
29.024.1 24.1
20.5 19.314.5116.916.919.0
0
20
40
60
80
100
1991 1993 1995 1997 1999 2001 2003 2005 2007
Pe
rce
nt
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 < .05
National Youth Risk Behavior Surveys, 1991 – 2007
7.3 8.6 8.7 7.7 8.3 6.918.48.58.8
0
20
40
60
80
100
1991 1993 1995 1997 1999 2001 2003 2005 2007
Pe
rce
nt
CONCLUSIONS: YOUNG ADULTS AND CHRONIC ILLNESS
• Depression
• Anxiety
• Post traumatic stress
– Symptoms
– Disorder
• Self concept
IF HARDINESS IS TYPICAL?WHY?
STRESS / TRAUMA MODEL
Evolutionary Behavioral Health
Illness Parameters
•Trauma to the CNS
Family Parameters
•Extreme Family Deprivation
ChildDysfunction
Childhood Chronic Illness
DARWIN: ORIGIN OF THE SPECIES
• General evolutionary theory
• Evolution by natural selection
• Inclusive fit theory
EVOLUTIONARY THEORY OF STRESS/TRAUMA: KEY FEATURES
• Specific hypotheses– Testable model
•
Developmental focus
• Role of coping or medications– Opportunities for behavioral
health
WHY EVOLUTIONARY THEORY?
• Uniting topics across disciplines of
behavioral science
• Requires an understanding of the
function of behavior
ATTACHMENT THEORY: STRANGER ANXIETY
• Cognitive
• Developmental
• Social
• Personality
• Clinical (psychiatry/psychology/DBP)
• Neuroscience
FUNCTION OF THE BEHAVIORWHY DOES IT EXIST?
• Origins within ancestral conditions
– Humans as living fossils
• Adaptive significance
DEVELOPMENTAL CONSIDERATIONS
• Adolescents take risks
• National Youth Risk Behavior Surveys, 1991 – 2007
Leading Causes of Death Among Persons Aged 10 – 24 Years in the
United States, 2003
Suicide11%
Motor Vehicle Crashes
31%
Other Unintentional
I njuries14%
Other Causes29%
Homicide15%
National Youth Risk Behavior Surveys, 1991 – 2005
Leading Causes of Death Among Persons Aged 25 Years and Older in the United
States, 2003
Cancer23%
Cardiovascular Disease
38%
Diabetes3%
Other Causes36%
National Youth Risk Behavior Surveys, 1991 – 2005
CHILD/ADOLESCENT RISK TAKING BEHAVIORS
• Neurobiological development
• Risk taking
– What were you thinking?
• Protective effect—children and teens live in the moment
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.
BEHAVIORAL HEALTH SERVICES
Empirically supported therapies
• Psychopharmacology
• Cognitive behavior therapies
PEDIATRIC SUB-SPECIALTY CARE
Coping and Wellness Center (Szigethy—RO1; NIH Innovator Award)
Polycystic Ovary Syndrome (Rofey--K 12)
Objectives:– Improve physical health
– Reduce stigma
– Improve access
– Remove communication barriers
PEDIATRIC PRIMARY CARE
Child & Family Counseling Center
– Partnership with CCP
– Empirically supported therapies
• Reduce stigma
• Improve access
• Eliminate communication barriers
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