الفهرس 
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Abstract
Summary
Introduction:-
The diagnosis of a child’s chronic kidney disease is a
stressful event for parents especially the mother who is
considered to be a main caregiver for the child (Arici,
2014)
Parental responses to the diagnosis of their child’s
chronic kidney commonly include disbelief, denial, anger,
frustration and confusion. Mothers of the chronic kidney
experience stressors which are usually multiple and
ongoing as they confront stressors at the time of diagnosis
and during the developmental transition. Community health
nurses must be aware of the ongoing responses, needs and
quality of life of the chronic kidney child and his/her
mother (Sharma, 2013).
Aim of study:-
The aim of the current study was to assess quality of
life among children suffering from chronic kidney disease.
Setting:-
The study was conducted in the pediatric nephrology
clinic and the pediatric conservative nephrology clinic of
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the pediatric dialysis unit at Ain Shams University Children
Hospital.
Sampling Technique:-
Sample of the study involved 164 children suffering
from CKD and their mothers from both sexes, with ages at
4-12years.
Data Collection:-
Data obtained through an interview with the chronic
kidney children and their accompanying mothers through
using the following tools:
The first tool:
Child assessment questionnaire was developed by
investigator and it was written in simple Arabic
language, it included the following:
Socio-demographic data of children include age,
gender, school age and child rank.
Socio-demographic data of mothers and fathers
include age, educational level and occupation.
Environmental assessment for children living in.
Data regarding the child’s medical history.
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Data regarding assessing mother’s knowledge about
CKD, definition, causes, signs, symptoms and
treatment.
Data regarding children health needs and problem
related to CKD by mother’s role towards the needs
and problem for the children.
* The second tools:
Quality of life inventory scale by (Grant et al., 2003)
it was used to assess level of quality of life for children
with CKD. It is consists of four items physical,
psychological, social, spiritual and general will being every
items contain some of point.
* The third tools:
Child’s medical record to assess health status of
children which included diagnosis, when the disease
started, the time of the treatment initiation and evaluate
physical circulatory, respiratory urinary tract, nervous,
motor system and skin condition for the child also included
the results of laboratory investigations.
Pilot Study:-
A pilot study was conducted on 10% of children and
their mothers to test the feasibility of the tools and the time
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consumed for filling in the questionnaire and also to test the
language clarify of the tools. Data obtained from the pilot
study was analyzed and accordingly the necessary
modifications were done. The number of the pilot study
was excluded from the study sample.
*Results:-
The main findings of the study can be
summarized as the following:-
As regards characteristics of the studied children it
was found that 41.5% of the studied children were in
age from 4<6 year, 59.8% of the studied children
were males, 56.7% of the studied children were at
first and second primary school, and 47.6% of them
were ranked as the first child in their families.
In relation to the studied mother’s characteristics it
was found that 49.4% of the studied mothers were in
the age ranged from 30<40 years, 45.2% of the
studied mothers were illiterate and 90.9% were house
wives.
More than 3 quarter 87.2% of the studied sample was
lived in separate home, 43.9% were lived in crowded
area.
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As regards medical history of the studied children it
was found that 37.2% of them duration of the CKD
appearance age of the illness 3 years and more,
43.9% of the studied children were admitted in
hospital, from 1 to 3 times, 90.2% of them the
reasons for admission in the hospital were related to
the disease and the regular checkup and follow-up
were 87.8%.
Less than quarter (24.4%) of the studied mothers had
satisfactory knowledge about meaning of CKD.
As regards the practice of mothers towards the needs
of the children it was found that 86.5% of mothers
practices correctly about elevate temperature above
38.5oC and 48.8% of mothers’ had correctly done
related to their role to keep healthy food for their
children and all of the mothers (100%) given the
child vaccination against polio in the campaigns
initiated by the ministry of health.
More than half (68.9%) of the studied sample had a
positive level of physically domain of quality of life
31.1% of the studied sample had a positive level of
psychological domain of QOL, 40.0% of them had
positive level of social domain of QOL and less than
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half 47.6% of the studied sample had a positive level
of spiritual domain of quality of life.
Less than half (43.8%) of the studied children the
start of disease was from 6 months < 1 year, 90.8%
of children were suffering from loss of appetite,
62.1% of children were suffering from high blood
pressure, 72.5% of them were suffering from
polyuria, 53.6% of children were suffering from
headache and 28.0% of them were suffering from
change of skin color.
There was a highly statistical significant relation
between mother’s age and their total knowledge and
there was highly statistical significant relation
between mother’s educational level and their total
knowledge.
There was statistical significant relation between
mother age and their total practice, there was a
highly relation between mothers educational level
and their total practice and there was non –statistical
significant relation between mothers work and their
total practices.
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Conclusion:
In conclusion the finding of this study revealed that
68 of children age was ranged from 4<6years, Indeed less
than half of mothers had unsatisfactory total knowledge,
and uncorrected total practice. Most of the children were
low weight, and the majorities were suffering from loss of
appetite. There was statistical significant relation between
mothers’ age, educational level, and their total practice.
Represent that there was a highly statistical significant
relation (P<0.001) between total knowledge and total QOL.
And Clarifies that was highly statistical significant relation
between total knowledge and total practice.
Recommendations:
In the light of the finding of the present study the
following recommendations are suggested:
1. Emphasize the importance of early cases finding
control and management through national screening
and surveying programs targeting CKD children.
2. Continuous educational training programs to children
with CKD and their mother to up-date their
knowledge and practice.
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3. Encourage the importance of regular follow-up and
regular investigation of children with CKD to ensure
proper CKD control and early detection of
complication.
4. Regular assessment of factors affecting quality of life
of the chronic kidney children in the pediatric
nephrology and conservative nephrology clinic of the
pediatric dialysis unit at Ain Shams University
children hospital and their mothers qualified stuff
nursing. And accordingly adopt proper intervention
to empower positive quality of life. And raise their
awareness regarding CKD.
5. Ensure the importance of community health nurses’
role in teaching, supporting counseling and managing
the chronic kidney children and their mothers to
comply with results in better QOL