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The Child with Special Health Care Needs
Andre Sookdar
Class of 2013
Objectives
• Child with Special Health Needs• Medical Home• Role of the Family Physician
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)
Definition
• Disabilities – Cerebral Palsy• Severe Chronic Illness – Type 1 DM• Congenital Defects – Cleft Palate• Health-related and Behavioural
problems – Learning Disorders or ADHD
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
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
Medical Model of Disability
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
Social Model of Disability
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 y0.7% Male 0.6% Female5-19 y 1.7% Male 1.4% Female
Statistics
Ages Total%
Mental%
Sight%
Hearing%
U Limbs%
L Limbs%
0 to 4 0.6 0.1 0.1 0 0 0.1
5 to 19 1.6 0.5 0.4 0.2 0.1 0.2
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
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 unpredictable
Cough: will it dissipate or lead to wheezing in the ER?
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
Poverty & Health risk
• Low Birthweight• Asthma• Delayed
Immunizations• Bacterial meningitis• Rheumatic Fever• Lead Poisoning• Diabetic
Ketoacidosis
• Lost school days• Severely impaired
vision• Iron def anaemia
History
• Parental Concerns• Current level of development and
function (Denver)• Temperament
Antenatal History
• Alcohol• Smoking• Medications• Illegal Drugs• Nutrition• Antenatal care• HIV• TORCH & other infections
Perinatal History
• Birth weight• Gestational Age• Labour difficulties• APGARS• Adverse events
(unprepared delivery etc)
• RDS
• Jaundice• Seizures• Ventilation
Family History
• Metabolic disease• Consanguinity• Mental function or special education• Early or unexpected death
Social History
• Resources ($, social support)• Education• Mental health• High-risk behaviour (drug, sex)• Stressors (marital discord)
Other History
• Gender• Trauma (head injury)• Infections (meningitis)• Toxic exposure (lead)• Physical growth• Visual, auditory function• Nutrition• Chronic conditions
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
Examination
• Make examination into games• Opportunistic approach• Involve the parent if child still hesitant
Examination
• Skin• CVS • Abd• GU• Neuro
Examination
Examination
Examination
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
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
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
Medical Home
Transition periods
• Discharge from hospital to home
• Entry into school life
• Adolescence
• Adulthood
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
Child’s Understanding
• 11 plus understanding of human body, organs and functions
• Most will ask questions similar to adults
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
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
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
Illness’ effect on Family
Stressors – • Monitoring health
status• Treatment regimes• Lack of information• Lack of opportunity to
discuss with professionals
• Physical, psychological and
social impact on child• Balancing the child’s
needs with those of the family
• Lack of time to oneself
• Guilt
Illness’ effect on Family
• Cyclical Grief or Chronic Sorrow
Illness’ effect on Family
DiagnosisShock - Disbelief - Denial
Problem SaturationDespair - Disability - Guilt
Acceptance
Normalization
Strengthening child’s resources
Sharing management
Participating in decisions
DesensitizingDoing normal things
Covering-upMaking Trade-offs
Altering the child’s environment
Illness’ effect on Family
• Allow ventilation• Facilitate
clarification• Support patient
problem-solving• Provide specific
reassurance• Provide education• Provide specific
parenting advice
• Suggest interventions
• Provide follow-up• Facilitate
appropriate referrals• Coordinate care and
interpret reports after referrals
Conclusion
• Child with Special Health Needs• Medical Home• Role of the Family Physician
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: http://www.parentingacademy.org