Emotional Aspects of Physical Illness in Children and Adolescents

1. Emotional Aspects of Physical Illness in Children and Adolescents

2. 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

3. 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

4. Psychological Aspects of Illness • Emotions • Behaviors • Cognitive States • Psychiatric Disorders

5. Relevance for Physicians • Diagnosis • Treatment • Screening for Psychiatric Disorders

6. Role of Psychological Factors in Diagnosis and Treatment • History - Symptom Reporting • Physical Exam • Blood Drawing • Other Diagnostic Procedures • Treatment • Compliance vs. Non-Compliance

7. Emotional Responses to Illness • Anxiety - Fear - Panic • Sadness - Despair - Hopelessness • Irritability - Anger - Rage • Passivity - Helplessness • Relief - Happiness - Mania

8. Problematic Behaviors in Response to Illness • Withdrawal - Social Isolation - School Refusal • Oppositional Behavior - Tantrums - Aggression • Head-banging - Self-Mutilation - Suicide • Attention-Seeking Behaviors

9. Potential Cognitive Changes in Physical Illness • Impairments in Intellectual Functioning • Attentional and Learning Problems • Slowed or Racing Thoughts • Hallucinations and Delusions

10. Potential Responses toChronic Illness • Denial • Why Me? or Why My Child? • Guilt • Feeling of Being “Different” • Fears of Disfigurement, Disability, Death

11. 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)

12. Constructive Responses to Physical Illness • Courage • Acceptance • Adaptation • Mastery

13. Approaches to Understanding Psychological Responses • Need for Conceptual Framework • Awareness of Risk and Protective Factors • Applications to Patient Care

14. Conceptual Frameworks • Biopsychosocial Model • Developmental Models • Applications of Developmental Concepts

15. 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

16. 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

17. 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

18. 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)

19. Applications of Developmental Concepts • Regression • Children’s Understanding of Illness and Death • Adolescents’ Sense of Invincibility

20. 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

21. 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

22. 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

23. 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

24. 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”

25. Mediating Factors in Emotional Response to Illness • Child Characteristics • Illness Characteristics • Family • School • Community • Health Care System

26. Mediating Factors: Child Characteristics • Age • Sex • Developmental Level • Temperament • Previous Experiences

27. Acute vs. Chronic Systemic vs. Local Disability Disfigurement Pain Restrictions on Activity Etiology Age at Onset Diagnosis Prognosis Mediating Factors: Illness Characteristics

28. Mediating Factors: Family • Family Structure: Intact vs. Fragmented • Socio-economic Status • Family Members’ Previous Experiences • Supportive • Capacity for Collaboration with Treating Staff

29. Mediating Factors: Other Environmental Variables • School • Peers • Health Care System

30. Mediating Factors: Treatment Variables • Short vs. Long-Term • Invasive vs. Non-invasive • Frequency • Need for Hospitalization - Single vs. Multiple • CNS Effects • Other Side Effects

31. Psychological Aspects of Selected Chronic Illnesses • Asthma • Juvenile Diabetes • Pediatric HIV Infection

32. 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

33. 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

34. Asthma: Treatment • Pharmacologic, Environmental, Psychological Components • High Rates of Treatment Non-compliance

35. Psychological Factors in Asthma: Pharmacologic Side Effects • Theophylline: Variable, with potential effects on learning and behavior • Steroids: Cushingnoid Appearance, Mood Swings, Psychosis

36. 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

37. 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

38. 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

39. 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

40. 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

41. 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

42. 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

43. Pediatric HIV: Emotional & Behavioral Problems • Apathy • Flat Affect • Anxiety • Depression • Aggression - spitting, biting

44. 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

45. Pediatric HIV: Management Issues • Complicated Treatment Regimens • Sexual Activities and Other High Risk Behaviors in Adolescents • Fear of Disability and Death • Confidentiality

46. 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