SOCIAL, EMOTIONAL, AND BEHAVIORAL FUNCTIONING OF CHILDREN EXPOSED TO MEDICAL TRAUMA: A THEORY OF HARDINESS Robert B. Noll, Ph.D. Director, Child Development

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


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



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



• 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


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


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


CANCER

COMP

*

*p < .05

SOCIAL ACCEPTANCE: NF1

-1-0.8-0.6-0.4-0.2

00.20.40.60.8

1

Three BestFriends


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


CANCER

COMP

**

**p < .01

SELF PERCEPTIONS

1

1.5

2

2.5

3

3.5

4


CANCER

COMP

MOTHER REPORTS

45

50

55

60

65

70



CANCER

COMP

FATHER REPORTS

45

50

55

60

65

70



CANCER

COMP

DISEASE SEVERITY: CANCER

• Peer reports: Aggressive-Disruptive

• Peer reports: Like Ratings

• Teacher reports: Sensitive-Isolated

CONCLUSIONS: Children with Cancer on Chemotherapy



• 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


CHRONIC ILLNESS

COMP

SELF PERCEPTIONS: 18 Y/O FOLLOW UP

1

1.5

2

2.5

3

3.5

4


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


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


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%


Leading Causes of Death Among Persons Aged 25 Years and Older in the United

States, 2003

Cancer23%

Cardiovascular Disease

38%

Diabetes3%

Other Causes36%


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

Documents

SOCIAL, EMOTIONAL, AND BEHAVIORAL FUNCTIONING OF CHILDREN EXPOSED TO MEDICAL TRAUMA: A THEORY OF HARDINESS Robert B. Noll, Ph.D. Director, Child Development