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

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