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CARE OF PEADIATRIC

CLIENTS WITH CHRONIC


DISEASE

Thandar Soe @ Sumaiyah Jamaludin

Allah's messenger ordered us to do


seven things. He ordered us: to follow
the funeral procession, to visit the
sick, to accept invitations, to help
the oppressed, to fulfill the oaths, to
return the greeting and to reply to
the sneezer: (saying, "May Allah be
merciful on you," provided the
sneezer says, "All the praises are for
Allah,")
(Sahih Bukhari 2.331:)

Good morning Brothers &


Sister!

Learning Outcome
Define and discuss about chronic disease in
pediatric clients
What are the characteristic of chronic illness
Discuss the effects of chronic illness on the child.
Discuss the role of nurse who is taking care of
clients with chronic disease or dealing with end of
life care.
Discuss ethical issue which can arise in dealing
clients with chronic illness

Chronic disease
Physical or mental conditions,
that affect the daily functioning of
individuals for intervals longer than
three months a year
or
for a duration of hospitalization longer
than one month

Chronic Disease
A child with a chronic illness is one who
is rendered unable to participate in
activities considered normal for
his age.
Epidemiological studies showed that
1 in 10 children under the age of 15
suffers from a chronic disease
or

one third of children under 18years of age


are suffering from one or more chronic
disorders or diseases

Characteristics of chronic
condition
Limitations in function
Deformity
Dependency on medication/ special
diet for control of the condition
Dependency on medical technology
Special ongoing treatments at home
or school

Chronic illnesses
include:

Cerebral palsy, diabetes, chronic renal


insufficiency, epilepsy
Inherited chromosomal anomalies like
Downs syndrome
Heart conditions, cancer, juvenile arthritis,
asthma, dermatitis (including severe eczema
and psoriasis)
Leukaemia and various types of anaemia.
Physical handicaps include: deformities,
Aamputations, burns and other severe
dermal damage.

Factors contributing to
childhood death
Cancer
Congenital anomalies eg: inborn errors
of metabolism
Cystic fibrosis
HIV/ AIDS
Major organ dysfunction eg: renal failure
Neurodegenerative disease eg: muscular
dystrophy
Trauma: accidents
Severe neurologic/ physical disability

Causes of death: infants


ALL CONDITIONS
Congenital malformations
Short gestation /LBW
Sudden Infant Death
Syndrome
Maternal complications
Complications of placenta,
cord, or membranes
Accidents/unintentional
injury

INFANTS WITH
complex chronic
conditions (CCC)
Cardiovascular
Congenital /
genetic
Respiratory
Neuromuscular

Causes of Death, Children


1-18 Years
All children
Accidents
Assault
Malignancy
Suicide
Congenital Malformations
deformations
Chromosomal anomalies
Heart disease
Cerebrovascular diseases

Children with CCC


Malignancy
Neuromuscular
Cardiovascular

Effects of Chronic illnesses


on child
Learning and speech difficulties,
sensory
dysfunctions,
mental
handicaps and behavioral problems
More likely to experience frequent
doctor and hospital visits.
Some of their treatments may be
scary orpainful.
Hospital stays can be frightening and
lonely

Effects of chronic illness on


the family

It is natural for parents to experience


despair and distress on hearing that
their child has a serious and chronic
illness especially when it is likely to
continue for a lifetime.

In severe cases the familys philosophy


on life, values, dreams, expectations
and other hopes can be shattered

Nurses Role in caring of


pediatric patients with chronic
illness

Open communication and exchange


of
ideas
are
important
in
the
constructive
adaptation
to
chronic
illnesses.
Its doesnt mean only practical tips about
the illness and its treatment, but also the
expression and acceptance of new
perceptions and sentiments that each
member of the family experiences with
the changing circumstances during a
crisis.

Nurses Role in caring of pediatric


patients with chronic illness
Psychological support of the child and family
Strategy that decrease stress and encourage the
child to cooperate when facing hospitalization
are:
previous short informative visits
brief conducted tour of the ward
explanation of the purpose of the medication
including the reasons for taking blood
visit to the actual surgical theatre where all the
stages of surgery can be explained if surgical
intervention is expected

Nurses Role in caring of pediatric


patients with chronic illness
Effective communication with the
suffering child and his family
ongoing professional development and
continuing education
sincerity with a glimmer of hope, regardless
of the seriousness of the childs condition.

Confident, relationships, cooperation


and collaboration are established.

Rehabilitation

Rehabilitation
Various factors contribute to the development of the
child with chronic illness.
Encouraging educational and recreational activities
as well as the regular followup of school activities
especially during hospitalization have proved
beneficial.
A
rehabilitation
team
should
involve
the
participation of the parents of the child with experts
such as the paediatrician, physiotherapist, speech
therapist, psychologist, educators, social worker,
community nurses and others

Rehabilitation
Social support is a very important
factor in the confrontation of chronic
illness.
Children who are the recipients of
support by parents and peers present
considerably more improved capacities
to adapt and show fewer behavioural
problems compared to children that
have only marginal sources of support.

None of you should wish for death


because of some harm that has
come to him. If he has such a wish,
he should say, O Allah, give me life
if You know that life is better for
me. And give me death if You that
death is better is better for me.
(Al-Bukhari and Muslim)

END-OF-LIFE CARE

Palliative care
Manage terminal illness or the dying
process
Focuses on symptom control and
support rather than cure

Paediatric palliative
and/or hospice care
(PP/HC)
This care focuses on:

enhancing quality of life


minimizing suffering
optimizing function
providing opportunities for personal
and spiritual growth.

PP/HC..cont.

Multidisciplinary approach:
social workers, religious people, nurses,
personal are aides & physician skilled in
caring for dying patients

Focus care on the complex


interactions between:

Physical
Emotional
Social
Spiritual issues

Common ethical dilemmas


Rationale to withhold

Pain control
Primary goal: comfort
Improved QOL
Easier dying process if child is pain
free

Chemotherapy
Prolonged life span
Increase QOL

Side effect of opiods


Fear of addiction

Decrease WBC, increase risk for


infection, bleeding, painful,
uncomfortable

Common ethical dilemmas


(2)
Rationale to withhold

Supplemental nutrition
(TPN, NG feeding)

Is beyond what child can ingest


More comfortable and natural
death

Resuscitation
Unwillingness of family to give up
Conflicts with cultural or religious
belief

Allows nature to take its course

Common ethical
dilemmas (3)
Rationale to withhold

Autopsy
Research: check genetic link

Religious, cultural belief


Family feelings
Belief that body will be
desecrated for funeral viewing

Nursing assessment
Clinical manifestations of the dying
child
Eg; CVS, Respiratory, neurology,
musculoskeletal, renal, GIT

Nursing role (KAP)


Knowledge regarding the condition
Informing the parents
Informing the child

Attitude being positive to the condition


Parental reactions
Siblings reactions

Practice to intervene for the condition


Caregiver burden
Family financial issues
Promoting healthy family coping

Assessing cultural
differences in dealing
with death
How much to reveal to a child
How much to participate in medical
decision making
The degree of trust in the medical
system
The amount of emotional display that
is appropriate

Cont
The concept of an afterlife and how to
prepare for it
Whether death should take place
alone, with the family or with an
extended group
Whether death should take place at
home or in the hospital

Postmortem and family


support

Coroner's post-mortem
The cause of death is unknown, or
following a sudden, violent or
unexpected death
Identify the cultural & ritual practice
Parent cannot refuse a coroner's post-mortem

Example: Muslim.how??
Organs cannot be returned within the period
of funeral.
May want to discuss the practical or spiritual
implications of any delay.

Hospital post-mortems
Carried out to gain a fuller understanding
of the illness or cause of death and to
enhance future medical care.
Consent legal requirement, even if the
deceased has already given consent.
Foetus or foetal tissue.
Any tissue/organs are to be preserved from
any postmortem for diagnosis, therapeutic
purposes, medical education or research.

Contpost-morterm and family support


Allow the family to spend as much
time as they need with the childs
body.
Save all of the childs personal items
eg: the last clothes

References
Center of Disease control, 2013.
NHPCO Facts and Figures: Pediatric
Palliative and Hospice Care in America.
Alexandria, VA: National Hospice and
Palliative Care Organization,
September 2014.
Malaysia Paediatric Association (MPA).
(2008). Paediatric Protocol- manual for
Malaysian hospitals, 2nd edition.
Malaysia: Ministry of Health.

Exercise 3
Snow Kate, 4 years old, female is
brought to the clinic for her annual
examination. She was brought by her
mother Jenny. Jenny told to the nurse
she is so much smaller than her friends
in nursery.
What additional health history and physical
examination you should obtain?
Develop one nursing diagnosis and carried
out your nursing intervention based on your
diagnose and nursing care plan.

All the flowers of all the


tomorrows are in the
seeds of today.
- Anonymous

Thank you