The Child with Special Health Care NeedsObjectivesDefinitionChildren 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 ofa type or amount beyond that required by children generally.” (Federal Maternal and Child HealthBureau)This will include children with disabilities (Cerebral Palsy), severe chronic illnesses (Type 1 DiabetesMellitus), congenital defects (Cleft Palate) and health-related educational and behavioural problems(learning disorder or Attention Deficit Hyperactive Disorder.)Impairment – loss or abnormality of physiology or anatomy, e.g. long eyeballDisability – restriction or loss of ability to perform actions in a manner or range normal for the person’sdevelopmental stage as a result of impairment. This is synonymous with pathology in the medicalmodel. E.g. myopiaHandicap – disadvantage for an individual, arising from a disability, which limits or prevents theachievement of desired goals, e.g. poor visual acuity. Handicaps may be relative, e.g. poor eyesight canbe overcome with spectacles. It may be social or psychological, not only physical.Medical Model of Disability:Introduced by WHO in 1980sociopolitical model by which illness or disability causes clear disadvantages to the individual andrevolves around identifying the disability from a clinical perspective, understanding it and aiming tocontrol or alter the course. The intention is to cure disabilities medically, to improve function and to
allow disabled persons a more “normal” life.Social Model of Disability:Reaction to the medical modelfocuses on identifying barriers, negative attitudes and societal exclusion of the disabled. While physical,sensory, intellectual or psychological variations may cause individual functional limitation; these do not
lead to disability until society fails to take into account of persons’ differences.StatisticsTrinidad and TobagoUNESCO 199517,950 children in primary school with Special Health Needs; 1795 with profound illness.Economic Commission for Latin America and the Caribbean20000-4 0.7% Male, 0.6% Female5-19 1.7% Male, 1.4% Female2009Ages Total Mental Sight Hearing U Limbs L Limbs0 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
UK – 770,000 disabled children (2007); severe disability 8 per 10,000 and mild disability 18 per 10,000.More disabled boys than girls (11 per 10,000 vs. 5 per 10,000)Children with Chronic ConditionsWhile adults face a small amount of common chronic diseases (DM, HTN, OA), children are subject to awide variety of rare diseases. A few groups are common e.g. asthma, but even the commonpresentations in a pediatric clinic (seizure disorders, cerebral palsy, ADHD) are rare in the generalpediatric population. Type 1 DM occurs about 1/1000 much lower that DM in adults. Children andfamilies may feel alone and isolated if there are no support groups for them.Many conditions are high-cost; not only on the health care system but families face additional costs fortransportation to multiple clinics, medication, special diets and medical equipment. Parents havedifficulty finding work that accommodates the needs of the child, further limiting financial resources.Multiple health care providers often lead to treatment conflicts and the families may be confused andneed guidance.Conditions can be unpredictable. Parents may worry whether a cough will dissipate or lead to wheezingin the ER.Chronic illness leads to greater dependence on parents, and health care providers, than healthy childrenwould. As such, there is an increased risk of psychological or behavioural problems.Possibly due to emphasis on specialized care and services, children with chronic illnesses have a lowerrate of immunizations and screening for common health problems. Lack of adequate primary care hasbeen associated with greater likelihood for hospitalization and substance abuse.HxExamGeneral ApproachEarly detection of the primary condition, preventing or limiting disability and to maximize the child’spotential for productive adult functioning. Except while in the hospital, the child’s family provides themost care, which at times can be an extraordinarily large amount of extra caretaking. Parental health,mental health and well being strongly affect the child’s outcome. Effective pediatric managementembodies a comprehensive approach to the child in the context of the family, addressing the needs ofall its members.
Medical HomeIs an approach to providing continuous and comprehensive primary care from infancy to youngadulthood, encompassing services to meet the child’s needs. Co-ordination of health care is essential forthe child with special health needs. Active management that is cost effective and appropriate, utilizingoutpatient and inpatient services, subspecialty provision and sharing of information is the goal. Thefamily is the one constant in the child’s life whereas services and personnel change. Family centeredcare is important for the family and child to be in control the majority of the time. Self managementminimizes learned helplessness and vulnerable child syndrome. Care should be accessible to the family, both financially and geographically Allow family-centered planning, decision making and treatment after adequate and unbiased medical opinion. Care is continuous from infancy to adolescence to adulthood, through transitions Physicians should facilitate co-ordination of care with centralized information and records Respect and concern for the child Care should be compassionate and culturally competentImportant transition periods to be aware of: 1. Upon discharge form hospital to home, the transition from the family relying on the hospital services to having to provide the care themselves should be facilitated. Discharge plans, medication schedules, home visits and other schemes can be used. 2. Entry into school life can be difficult for most children. Medications, plans for emergencies and special needs should be planned with the involvement of the school personnel. The child’s integration into the class’ social atmosphere should be monitored as well. 3. At adolescence, chronic conditions may affect the child’s risk-taking behaviours, substance or drug use and the development of healthy sexuality. 4. The transition from adolescence to adulthood is marked with difficulties obtaining health insurance, gaining educational or vocational services, shifting from pediatric to adult health care and achieving personal and economic independenceChild’s understanding4-6 Concrete view, obeying rules will lead to good things, bad behavior leads to bad things7 – 10 differentiate self from external events that may cause illness, understand Germ theory, but maynot understand illnesses such as leukemia and diabetes11 and up better understanding of human body, organs. Able to link symptoms with illness and may askquestions similar to adults.
Illness’ effect on childrenInfancy – affects growth and development parameters, feeding, sleeping, motor abilities and sensoryfunctions. Deformity may affect the child’s response to parents, who in turn react differently to child.Frequent hospitalizations may burden the family.Preschool – delay in autonomy, mobility, self control.Schoolchild – may be subject to teasing and social isolation. Frequent absenteeism may cause missedsocial opportunities.Adolescence – may affect the development of independence. Care of the illness gradually shifts from theparent to the child, but not always so. Illness may affect body image and cause embarrassment. Childmay test the limits of the illness and compliance becomes an issue.Illness’ effect on FamilyCyclical Grief or chronic sorrow – unhappiness and depressed feeling come and go without warning.Intense feelings of sadness at unexpected events e.g. meeting developmental milestones, but late. Griefover the loss of expectations of what the child could have done or been.