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PRESENTED BYvirendra S Shekhawat
CKRD memorial nursing collagejhunjhunu
CARE OF THE HANDICAPPED
CHILD
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INTRODUCTION
The term handicapped is onewho deviates from normal healthstatus either physically, mentally
or socially and requires specialcare, treatment and education.
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CONCEPT OF DISABILITY
According to WHO, the sequence ofevents leading to disability andhandicapped conditions are asfollows:
Injury or disease ImpairmentDisability
Handicap
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Cont..,Handicapping conditions in general, including
(1) chronic illness any illness with a protracted course
that can be progressive and fatal or one that is associatedwith a relatively normal life span despite impaired
physical or mental functioning
(2) permanent loss of a physical or sensory ability
(3) developmental disability any disability that is attributable tomental retardation, cerebral palsy, epilepsy, autism, dyslexia, orany other condition related to mental retardation; thatoriginates before age 18 years and has continued to be or can beexpected to continue indefinitely; and that constitutes asubstantial handicap to the ability to function normally in societyand
(4) multiple handicaps the presence of more than onehandicapping condition.
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SCOPE OF PROBLEMIt is estimated that as many as 10% to 15% of all
children under 18 years of age have some type ofchronic illness, including sensory impairments.
Clearly nurses have a more crucial role than everbefore in early screening, case finding,
assessment, and diagnostic studies.Another major responsibility is preventing
further handicapping conditions by assuring immunization programs,
identifying infants and mothers who may be at riskprenatally or postnatally,
identifying the disability early, and
implementing innovative health education programs
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AT RISK CONDITIONS FOR HANDICAPS IN INFANTS
Maternal factors Infant factors
History of infertility
History of abortions (3 times)
Previous delivery stillborn orsuffered neonatal death
Previous premature delivery
Previous delivery of infant withcongenital defects
Weight gain during pregnancy less
than 4.5 kg
Threatened abortion in first orsecond trimester
Premature labor
Fetal distress, meconium-stained ileus
Prematurity or postmaturity
Low gestational weight
Congenital defects
Apgar score of or below at 1 or 5 mins
Addiction withdrawal symptoms
Hypoglycemia requiring treatment
Seizures
Use of oxygen at greater than 40%concentration for more than 24 hrs
Recognized viral syndromes
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Cont..,Maternal factors Infant factors
Prolonged rupture of membranes(more than 20 hours)
Cesarean section
Abruption placentae
Cord prolapse
Fetal distress (decreasing fetal hearttones)
Multiple birth
Breech birth
Preeclampsia-eclampsia
Recognized bacterial, protozoan, orfungal infections
Bilirubin level 15 mg/100 ml or abovein premature or low gestational weightinfants
Bilirubin level 20 mg/100 ml or abovein full term infants
Metabolic disease
Drug depression
Resuscitation needed for more than 2minutes
Chromosomal anomaly
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CHANGING TRENDS IN CAREAmerican society has passed through three stages
in providing services to handicapped children.
The first stage of which is forget and hide.The parents and family were encouraged to place
the handicapped child in an institution or send himaway to relatives.
Persons were oriented to an out of sight-out ofmind philosophy in order to cope with differences.
Negative attitudes prevailed, and handicappedpersons were neglected.
Many constitutional rights were abused or violated.
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Cont.., The second phase is described as screen and
segregate. During the years following world war II, special
classes for handicapped children were offered byspecially trained personnel.
Many believe that this was a subtle way ofsegregating handicapped children from regularteachers and classrooms.
The present stage is referred to as identify andhelpIt is characterized by finding children in need of
services at the earliest possible age and beginning
treatment.
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FAMILIES OF HANDICAPPED CHILDRENIMPACT OF DIAGNOSIS:
Many of the reactions of parents to the birth of adefective child are observed when the diagnosis of ahandicapping condition is made later in life.
The parents have, in a sense, lost the perfect childthey had and now have to adjust to a child with adisability.
The parents need the opportunity to mourn the loss
of the perfect child before they can adjust to and fullyaccept a child who is handicapped.
This period varies with each parent but usuallyproceeds through the following stages.
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REACTIONS TO DIAGNOSIS
DISINTEGRATIONDENIAL
ACCEPTANCE
DENIAL
REJECTION
OVERPROTECTION
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I. Shock
It is a period of intense emotion.
It may be accompanied bydenial, especially if thehandicap is not obvious, such as in chronic
illness.
If the defect is highly obvious and overwhelming,
such as the loss of eyesight or a limb, this periodmay be characterized bydisintegration, becausethe emotional development for dealing with thediagnosis leave no reserve for dealing with
realistic problems.
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II. AdjustmentAdjustments soon follows shock and is usually
characterized by an open admission that the handicap
exists. This stage is one ofchronic sorrow and onlypartial acceptance.
This period is manifest by several responses, probablythe most universal of which are guilt and self-
accusation.Other common reactions arebitterness or anger
because the child is an obstacle interfering withparental goals and envytoward those who are notburdened with a handicapped child.
Because the real reason for such feelings is usuallyunacceptable to parents, the emotions may beredirected toward others, such as health professionals,for not curing their child.
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TYPICAL PARENTAL REACTIONS
in which parents anticipate social rejection,pity, or ridicule and related loss of social prestigeand may experience social withdrawal
in which parents perceive a defect in theirchild as a defect in themselves;
their life goals may be abruptly anddramatically altered, andthey lose the fantasy of immortality throughtheir child
in which the simultaneous experience of loveand hatred normally experienced by parentstoward their children
1.Loss of self esteem
2.Shame
3.Ambivalence
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TYPICAL PARENTAL REACTIONS
in which parents adopt a martyr attitude andfocus their total interest on the child with mentalretardation, often to the detriment of otherfamily members
in which parents experience chronic feelings ofsorrow as a nonneurotic reaction to having a
retarded child;to some parents MR symbolizes the childsdeath and therefore precipitates a grief reaction
in which parents become acutely sensitive toimplied criticism of their retarded child and
may react with resentment and belligerence, or they may deny the existence of MR and seekprofessional opinions to substantiate their own
belief that there is really nothing wrong with
him.
4.Depression
5.Self-sacrifice
6.Defensiveness
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The period of readjustment
in which the parents detach themselvesemotionally from the child but usually provideadequate physical care or constantly nag and
scold the child
in which the parents fear letting the child achieveany new skill, avoid all discipline, and cater to
every desire to prevent frustration
in which parents act as if the handicap does notexist or attempt to have the child overcompensate
for it
1.Overprotection orthe benevolentoverreaction
2.Rejection
3.Denial
in which parents place necessary and realisticrestrictions on the child, encourage self-careactivities, and promote reasonable physical and
social abilities.
4.Gradual acceptance
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III. Reintegration and acceptance
The last stage is characterized by realisticexpectations for the child and reintegration offamily life with the handicap in properperspective.
Since a large portion of the adjustment phase isone of grief for a loss, total resolution is notpossible until the child dies.
Therefore, one can regard adjustment to chronicsorrow as increased comfortableness witheveryday living.
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It is also one of social reintegration in which thefamily broadens its activities to includerelationships outside of the home with thehandicapped child as an acceptable and
participating member of the group.
This last criterion often differentiates thereaction of gradual acceptance during theadjustment period from total acceptance.
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IV. Freezing-out phase
Not all families reach the stage of acceptance andreintegration.
However, if strategies of coping cannot beemployed to minimize the stress and
disorganization of maintaining the child withinthe home to tolerable levels, the handicappedchild may be permanently eliminated by placinghim outside the home in some type of residential
setting, usually institutionalization.
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EFFECTS ON FAMILY MEMBERS
Each family who has a child with a handicapcomprises a handicapped family.
No one member remains uninvolved or
unaffected by the experience.
The childs and siblings reactions are usually
direct consequences of the parents responses.
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PARENTS
Parenting handicapped children may be a series of
unrewarding experiences, which continually support theparents feelings of inadequacy and failure.
Parents mayhave excessive demands placed on their time,energy, and financial resources.
Each partner may displace feelings ofresentment, anger, andbitterness on the other for having their life-style disrupted bythe childs handicap, unaware of the true reason for suchfeelings. For example, a mother who is forced to terminate acareer in order to assume full-time child care may express
her feelings of resentment and bitterness as anger toward herhusband for not sharing more in the house-hold chores.
Reports indicate that divorce and suicide rates are higher infamilies with a handicapped child than in the generalpopulation.
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SIBLINGS
Siblings are deeply affectedby the handicapped childsmembership in the family.
Frequently the developmentally disabled child causes arevision of age and sex roleswithin the family.
For example, if the retarded child is firstborn, hebecomes the youngestby virtue of his developmental
age. Conversely the second-born becomes the oldest,often shouldering adult-like responsibilities andachieving parental expectations that would have been
reserved for the eldest.
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Reactions of siblings to a mentally retarded childdiffer.
In one study about half the siblings reported that theybenefited from the experience, about half believed thatthey were harmed, and a minorityfelt unaffected.
In the investigators opinions those siblingswho hadbenefited had a greater understanding of people,
showed more compassion,
were more sensitive about prejudice and its consequences,and
had more appreciation of their peers who had not had theexperience of growing up with a mentally retarded sibling.
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In contrast the siblings,who were judged to be harmedexhibited shame about their handicapped sibling and guilt about
their feelings,
conveyed a sense of guilt about their own good health,
felt neglected by their parents, and believed that the handicapped child had negatively affected
the rest of the family.
HANDICAPPED CHILD
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HANDICAPPED CHILDThe childs reaction to his handicap depends to a great
extent
on the reactions of significant others to him and to hisdisability,
the childs developmental and his available copyingmechanisms, and,
to a lesser extent, the handicap itself.
The well-adapted child slowly learns to accept hisphysical limitations but finds achievement in a varietyof compensatory motor and intellectual pursuits. He
functions well at home, at school, and with peers.
He has an understanding of his disorder that allowshim to accept his limitations, assume responsibility for
care, and assist in treatment and rehabilitation
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The well-adjusted handicapped person displays pride andself-confidence in his ability to master a productive,successful life despite the disability.
When a child experiences a serious disability, he proceedsthrough three predictable stages.
The first is immediate withdrawal in which the child becomesdepressed and nonresponsive.
The second is preoccupation with self, in which the child focuseson his disability and loss of previous abilities.
The third is a gradual return to reality, which is closely linked tothe parents ability to adjust to the handicap. Response to loss ofa body function and/or part is manifest in grief responses, no,
not me (denial), why me?(anger), and yes me (depression).
CHILD WITH CHRONIC ILLNESS
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CHILD WITH CHRONIC ILLNESSChildren with serious respiratory disorders commonly harbor
fears of suffocation, drowning, or dying while asleep.
Children with convulsive disorders frequentlyfear loss ofconsciousness or uncontrollable strange behavior. They may resistobtaining a drivers license for fear of a seizure, which prolongstheir dependency on their parents.
Children withbleeding disorders mayfear hemorrhaging to deathand may resist medical procedures, such as injections, for fear ofinitiating such an episode.
Children with chronic renal disease often have frighteningfantasies about hemodialysis, such as fears of bleeding to death orof the machine assuming control of them. After kidney transplantparents may overprotect them and use possible graft rejection as ameans of controlling their activity. If an actual rejection occurs, the
child may respond with depression, withdrawal, and self-blame forhaving destroyed the kidney.
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EXTENDED MEMBERSExtended members include two groups of people who
experience the effects of a handicapped child:
(1) the significance nonnuclear family members or friends, and
(2) society as a whole.
Although extended family relationships are oftenhelpful to parents in rearing a handicapped child, theymay also be sources of stress.
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