Emotional Aspects of Physical Illness in

Children and Adolescents

Overview

• Scope of Topic

• Relevance for Physicians

• Spectrum of Emotional Responses to Illness

• Conceptual Framework

• Mediating Factors

• Psychological Aspects of Selected Illnesses

• Guidelines for Evaluation and Management

Scope of Topic

• Acute Minor Illnesses and Injuries: Universal Childhood Experiences

• Chronic Physical Illnesses: 10 to 15% of children will experience before age 18

• Emotional-psychological aspects are present across all age groups and illnesses

Psychological Aspects of Illness

• Emotions

• Behaviors

• Cognitive States

• Psychiatric Disorders

Relevance for Physicians

• Diagnosis

• Treatment

• Screening for Psychiatric Disorders

Role of Psychological Factors in Diagnosis and Treatment

• History - Symptom Reporting

• Physical Exam – Blood Drawing – Other Diagnostic Procedures

• Treatment – Compliance vs. Non-Compliance

Emotional Responses to Illness

• Anxiety - Fear - Panic

• Sadness - Despair - Hopelessness

• Irritability - Anger - Rage

• Passivity - Helplessness

• Relief - Happiness - Mania

Problematic Behaviors in Response to Illness

• Withdrawal - Social Isolation - School Refusal

• Oppositional Behavior - Tantrums - Aggression

• Head-banging - Self-Mutilation - Suicide

• Attention-Seeking Behaviors

Potential Cognitive Changes in Physical Illness

• Impairments in Intellectual Functioning

• Attentional and Learning Problems

• Slowed or Racing Thoughts

• Hallucinations and Delusions

Potential Responses toChronic Illness

• Denial

• Why Me? or Why My Child?

• Guilt

• Feeling of Being “Different”

• Fears of Disfigurement, Disability, Death

Physical Illness as Risk Factor for Psychiatric Disorder

• Psychiatric Disorders found in 20% or more of medically ill children

• High Rates of psychiatric disorders in children with CNS impairments (ie., epilepsy, AIDS, Brain Tumors, Head Injuries)

Constructive Responses to Physical Illness

• Courage

• Acceptance

• Adaptation

• Mastery

Approaches to Understanding Psychological Responses

• Need for Conceptual Framework

• Awareness of Risk and Protective Factors

• Applications to Patient Care

Conceptual Frameworks

• Biopsychosocial Model

• Developmental Models

• Applications of Developmental Concepts

Biopsychosocial Model: A Systems Approach to Disease

• Biological Component - anatomical, biochemical and molecular substrates

• Psychological Component - emotions, motivations, cognition

• Social Component - Family, School, Community, including Medical System

Developmental Approach: Basic Tenets

• Development occurs as a continuous series of interactions between the child’s biological endowment and the environment

• The child’s understanding of and psychological response to medical illness is contingent on his or her developmental level and environmental experiences

Potential Effects of Illnesson Development

• Regression from previous levels of mastery

• Delay in Achievement of Developmental Landmarks - Emotional, Social, Motoric, Linguistic, Academic

• Acceleration of Cognitive Understanding of Illness and Death

• Neglect or Excessive Attention to Somatic Concerns

Cognitive Development: Piaget

• Sensorimotor Stage (Birth to 2 Years)

• Pre-operational Stage (2 to 7 years)

• Concrete Operations (7 to 11 years)

• Formal Operations (11 years through adolescence)

Applications of Developmental Concepts

• Regression

• Children’s Understanding of Illness and Death

• Adolescents’ Sense of Invincibility

Regression

• Return to developmentally earlier mode of functioning - emotional, behavioral, cognitive, linguistic or motoric

• Example: a 12 year old boy insists that his mother feed him and sleep in his room after he returns home from a hospitalization for a broken leg sustained in a bicycle accident

Cognitive Understanding of Illness

• Pre-operational Stage: “Immanent Justice” - illness as punishment

• Concrete Operations (Early): “Contagion”

• Concrete Operations (Late) and Formal Operations: Growing Understanding of Disease Mechanisms and Etiological Complexity

Understanding of Illness: Examples

• A 3 year old boy states that he has asthma attacks because he is “bad” – (concept of “immanent justice”)

• A 6 year old girl states that she “caught” diabetes from her sister (contagion)

• A 12 year old boy with diabetes describes the role of the pancreas and insulin in regulating blood levels of glucose

Concepts of Death and Dying

• Below Age 5: Fears of Abandonment, Lack of Awareness of Irreversibility

• Ages 5 to 10: Confusion, Focus on body parts

• Ages 10 to 15: Reality, Despair

Concepts of Death and Dying: Examples

• A 3 year old girl asks who will “take care” of her if she dies

• A 6 year old boy wonders who he will be able to “eat ice cream” with in his grave

• A 13 year old boy with osteosarcoma asks why he has to go to school since he is “going to die anyway”

Mediating Factors in Emotional Response to Illness

• Child Characteristics

• Illness Characteristics

• Family

• School

• Community

• Health Care System

Mediating Factors: Child Characteristics

• Age

• Sex

• Developmental Level

• Temperament

• Previous Experiences

Mediating Factors: Illness Characteristics

• Acute vs. Chronic• Systemic vs. Local• Disability• Disfigurement• Pain• Restrictions on

Activity

• Etiology • Age at Onset• Diagnosis• Prognosis

Mediating Factors: Family

• Family Structure: Intact vs. Fragmented

• Socio-economic Status

• Family Members’ Previous Experiences

• Supportive

• Capacity for Collaboration with Treating Staff

Mediating Factors: Other Environmental Variables

• School

• Peers

• Health Care System

Mediating Factors: Treatment Variables

• Short vs. Long-Term

• Invasive vs. Non-invasive

• Frequency

• Need for Hospitalization - Single vs. Multiple

• CNS Effects

• Other Side Effects

Psychological Aspects of Selected Chronic Illnesses

• Asthma

• Juvenile Diabetes

• Pediatric HIV Infection

Asthma

• Most prevalent chronic illness in childhood

• 5% of American children

• No.1 cause of school absenteeism due to chronic illness – 10 million missed days/year

• 3 million ER visits/year

• 500,00 hospitalizations

• 6000 deaths

Asthma: Emotional Factors

• Multi-factorial etiology

• Role of Stressors: Familial/Environmental

• Reactions of Child and Parents to Restrictions on Child’s Activity Level

• Frightening quality of asthma attacks

• Fear of Death

• Symptoms of Depression and Anxiety Common in Asthmatics

Asthma: Treatment

• Pharmacologic, Environmental, Psychological Components

• High Rates of Treatment Non-compliance

Psychological Factors in Asthma: Pharmacologic Side Effects

• Theophylline: Variable, with potential effects on learning and behavior

• Steroids: Cushingnoid Appearance, Mood Swings, Psychosis

Insulin-Dependent Diabetes Mellitus (Juvenile Diabetes)

• Affects about 1 in 600 children below age 12 in North America

• 11,000 - 12,000 new cases per year

• 7 million people with Diabetes Mellitus in U.S.; 5 - 10% have IDDM

IDDM: Management Issues

• Need for Daily Monitoring and Treatment

• Effects on Broad Range of Activities (Diet, Exercise, School, Social Situations)

• Risk of Acute Crises (Seizures, DKA)

• Uncertainty about long-term outcome

IDDM: Cognitive Factors

• Risk of Neurocognitive Impairments from Hypo- and Hyper-Glycemia and Seizures

• Age of Onset and Duration

• Role of Cognitive Understanding by Parents and Child to Disease Management and Control

IDDM: Emotional & Behavioral Problems

• Symptoms of Depression and Anxiety at time of diagnosis

• Impairment in Self Esteem

• Non-compliance with daily management regimen

• Involvement in High-Risk Activities in Adolescence

IDDM: Management Approach

• Parent Education regarding the disorder

• Child Education appropriate to age and developmental level

• Involvement of School Staff

• Psychotherapy and family counseling when indicated

• Peer Support Groups - Local and National– American Diabetic Association– Juvenile Diabetes Foundation

Pediatric HIV Infection

• Worldwide over 500,000 children died of AIDS in 1998

• 590,000 children under age 15 newly infected with AIDS in 1998 worldwide

• 8280 children and 3302 adolescents with AIDS in US in 1998

• Most new pediatric HIV cases are due to perinatal transmission - gestation, labor, delivery, breast-feeding

Pediatric HIV Infection: Cognitive Effects

• 20 - 50% of children with HIV have CNS disease

• 10% of children with HIV have progressive encephalopathy

• CNS disease more common in younger children (under age 3)

• Children with HIV are at increased risk for other causes of cognitive impairment

Pediatric HIV: Emotional & Behavioral Problems

• Apathy

• Flat Affect

• Anxiety

• Depression

• Aggression - spitting, biting

Pediatric HIV: Special Considerations

• Child may have lost 1 or both parents to AIDS

• Grief over parental loss may be compounded by multiple foster care and institutional placements and high degree of stigmatization associated with HIV

• Disclosure may lead to ostracism and interference in school and social activities

Pediatric HIV: Management Issues

• Complicated Treatment Regimens

• Sexual Activities and Other High Risk Behaviors in Adolescents

• Fear of Disability and Death

• Confidentiality

Emotional Aspects of Physical Disease: Management Summary

• Assess child, family, environment

• Know Illness Characteristics - onset, course, treatment side effects, prognosis

• Identify Risk and Protective Factors

• Formulate Developmentally Appropriate Plan for Child and Family