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The child with special health care needs


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The child with special health care needs

  1. 1. The Child with Special HealthCare Needs Andre Sookdar Class of 2013
  2. 2. Objectives• Child with Special Health Needs• Medical Home• Role of the Family Physician
  3. 3. Definition• Children with Special Care Needs are “those who have or are at increased risk for a chronic physical, developmental, behavioural, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” (Federal Maternal and Child Health Bureau)
  4. 4. Definition• Disabilities – Cerebral Palsy• Severe Chronic Illness – Type 1 DM• Congenital Defects – Cleft Palate• Health-related and Behavioural problems – Learning Disorders or ADHD
  5. 5. Definition• Impairment – loss or abnormality of normal physiology or anatomy, e.g. long eyeball• Disability – restriction or loss of ability to perform normal actions e.g. myopia• Handicap – disadvantage for an individual, arising from a disability
  6. 6. Medical Model of Disability• Introduced by WHO in 1980• Identifying the disability from a clinical perspective• Understand and control or alter the course• Cure disabilities medically, to improve function and to allow disabled persons a more “normal” life
  7. 7. Medical Model of Disability
  8. 8. Social Model of Disability• Reaction to the medical model• Identifying barriers, negative attitudes and societal exclusion of the disabled• Society fails to take into account of persons’ differences
  9. 9. Social Model of Disability
  10. 10. Statistics• Trinidad and Tobago (UNESCO1995) 17,950 children (10%) in primary school with Special Health Needs; 1795 with profound illness.• Economic Commission for Latin America and the Caribbean 2000• 0-4 y 0.7% Male 0.6% Female 5-19 y 1.7% Male 1.4% Female
  11. 11. StatisticsAges Total Mental Sight Hearing U Limbs L Limbs % % % % % %0 to 4 0.6 0.1 0.1 0 0 0.15 to 19 1.6 0.5 0.4 0.2 0.1 0.2
  12. 12. Special Health Care Needs• Adults face a small amount of common chronic diseases (DM, HTN, OA) whereas children face a wide variety or rare illnesses.• Few groups are common (e.g. asthma)• Common pediatric clinic presentations (seizure disorders, CP) are rare in the general population• Alone, isolated if no support
  13. 13. Special Health Care Needs• High cost to both health care system and family• Multiple clinics, medication, diets, equipment• Multiple providers may conflict• Conditions can be unpredictableCough: will it dissipate or lead to wheezing in the ER?
  14. 14. Special Health Care Needs• Greater dependence on parents and health care providers• Lower rate of immunizations and screening for common health problems• Lack of adequate primary care  greater likelihood for hospitalization and substance abuse
  15. 15. Poverty & Health risk• Low Birthweight • Lost school days• Asthma • Severely impaired• Delayed vision Immunizations • Iron def anaemia• Bacterial meningitis• Rheumatic Fever• Lead Poisoning• Diabetic Ketoacidosis
  16. 16. History• Parental Concerns• Current level of development and function (Denver)• Temperament
  17. 17. Antenatal History• Alcohol• Smoking• Medications• Illegal Drugs• Nutrition• Antenatal care• HIV• TORCH & other infections
  18. 18. Perinatal History• Birth weight • Jaundice• Gestational Age • Seizures• Labour difficulties • Ventilation• APGARS• Adverse events (unprepared delivery etc)• RDS
  19. 19. Family History• Metabolic disease• Consanguinity• Mental function or special education• Early or unexpected death
  20. 20. Social History• Resources ($, social support)• Education• Mental health• High-risk behaviour (drug, sex)• Stressors (marital discord)
  21. 21. Other History• Gender• Trauma (head injury)• Infections (meningitis)• Toxic exposure (lead)• Physical growth• Visual, auditory function• Nutrition• Chronic conditions
  22. 22. Examination• Observe child at play• Speak gently to the child• Approach with friendly manner• Examine on mother’s lap, floor or wherever the child feels comfortable
  23. 23. Examination• Make examination into games• Opportunistic approach• Involve the parent if child still hesitant
  24. 24. Examination• Skin• CVS• Abd• GU• Neuro
  25. 25. Examination
  26. 26. Examination
  27. 27. Examination
  28. 28. Special Health Care Needs• Early detection• Prevention or limitation of disability• Maximize the child’s potential• Child in the context of the family• Address needs of all members
  29. 29. Medical Home• Approach to providing continuous and comprehensive care• Cost-effective, appropriate• Outpatient, inpatient, subspecialty services• Establish family-centered care• Minimize learned helplessness and vulnerable child syndrome
  30. 30. Medical Home• Care should be accessible, financially and geographically• Family-centered planning, decision making• Continuous• Physicians facilitate coordination of care and information sharing• Respect and concern for the child• Compassionate and culturally competent
  31. 31. Medical Home
  32. 32. Transition periods• Discharge from hospital to home• Entry into school life• Adolescence• Adulthood
  33. 33. Child’s Understanding• Children need different explanations of their disease as they mature• Ages 4-6 good vs bad• 7-10 differentiate self from external environment• Germ theory and medications fighting illness• May not understand more complicated illnesses
  34. 34. Child’s Understanding• 11 plus understanding of human body, organs and functions• Most will ask questions similar to adults
  35. 35. Illness’ Effect on Child• Infancy – affects growth and development• Deformity affects child’s response to parents and vice versa• Frequent hospitalizations may burden the family
  36. 36. Illness’ Effect on Child• Preschool – delay in autonomy, mobility and self control• Schoolchild – may be subject to teasing and social isolation• Absenteeism  missed social opportunities
  37. 37. Illness’ Effect on Child• Adolescence – affects development of independence• Affects body image and causes embarrassment• Frequently test limits of illness and compliance to treatment becomes an issue• Greater shift of care from parent to child
  38. 38. Illness’ effect on FamilyStressors – psychological and• Monitoring health social impact on child status • Balancing the child’s• Treatment regimes needs with those of• Lack of information the family• Lack of opportunity to • Lack of time to discuss with oneself professionals • Guilt• Physical,
  39. 39. Illness’ effect on Family• Cyclical Grief or Chronic Sorrow
  40. 40. Illness’ effect on Family Diagnosis Shock - Disbelief - Denial Problem Saturation Despair - Disability - Guilt Acceptance Normalization Altering the child’s Strengthening child’s environment resourcesMaking Trade- Covering-up Doing normal Desensitizing offs things Sharing Participating in management decisions
  41. 41. Illness’ effect on Family• Allow ventilation parenting advice• Facilitate • Suggest clarification interventions• Support patient • Provide follow-up problem-solving • Facilitate• Provide specific appropriate referrals reassurance • Coordinate care and• Provide education interpret reports• Provide specific after referrals
  42. 42. Conclusion• Child with Special Health Needs• Medical Home• Role of the Family Physician
  43. 43. References• Behrman, Kliegman, Jenson. Nelson Textbook of Pediatrics 17th Ed, Saunders 2004• Aumann K, Britton C. Good Practice in working with parents of disabled children cited Oct 2012 Available from: