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