الفهرس 
Thalassemia: An overviewOnly 14 pages are availabe for public view
Abstract
Thalassemia is a genetic disease which the body is unable to
produce hemoglobin naturally in the form of transport of oxygen
and nutrients to the cells and excrete of waste and carbon dioxide,
the need for anti-thalassemic educational and awareness programs
exhibits. The only effective way to overcome the prevalence of
thalassemia is to stop the birth of thalassemic children by making
premarital screening compulsory for general public and
counseling to the affected families. Thalassemia has already been
addressed successfully in many countries by running educational
campaigns, making people aware of the disease and highlighting
its preventive measures to get rid of the disease. The pediatric
nurse has to be interested in sharing knowledge with mothers
about children basic needs, barriers and treatment program.
Aim of the study
The aim of this study was to assess barriers hindering
maternal care of their children suffering from thalassemia.
Research questions:
What are the maternal barriers hindering care for their
children suffering from thalassemia? Subject and methods:
I. Research design
A descriptive design was utilized to achieve the aim of this
study.
Research setting:
The study was conducted in Pediatric Hematology Outpatient
Clinics affiliated to both Ain Shams University and Zagazig
University Hospitals. A purposive sample composed of 100
mothers regardless their characteristics (50 from each study
setting) provided care to their children suffering from thalassemia
under the following inclusion criteria: all children suffering from
thalassemia, from both genders and their accompanying mothers
regardless of age, educational level, residence and socioeconomic
standards. Exclusion criteria: children suffering from any other
acute and/ or chronic illness.
Tool of data collection:
Interview questionnaire sheet:
It was designed by the researcher after reviewing the current
available literature and was written in simple Arabic language to the studied sample level of understanding and composed of
the following parts:
Part (1): It included data related to characteristics of the
studied children and their mothers (as age, gender, rank and level
of education), family (as family type, residence, the number of
children in the family and consanguinity) and the home
environment (as type of home and number of rooms).
Children’s past and present medical history of disease (present
complain, onset of the disease and complete data about transfusion
regimen
Part (2): Assess the mother’s knowledge about thalassemia
(definition, causes, manifestations, complications and treatment).
Questions were in the form of open, close-ended and multiple
choices. The time consumed to fill out the questionnaire by the
researcher from each mother was 15-20 minutes.
Scoring system: It was followed to estimate the outcome of
mother’s knowledge, two scores were given for complete and
correct knowledge, one for incomplete correct knowledge and
zero for incorrect knowledge. The total score level for the
mother’s knowledge sheet was 80 scores. The mothers total
knowledge was checked with a model key answer and accordingly
their knowledge were categorized into either unsatisfactory knowledge (score less than 60%) and satisfactory knowledge
(from 60 to less than 100%).
Part (3): Barriers hindering maternal care of their children
suffering from thalassemia (physical, psychological, social,
spiritual, nutritional, educational and financial barriers).
Scoring system: One score was given if there were barriers
and zero score if not. The total scores of items were classified into
either having barriers (score less than 60%) and not (from 60 to
less than 100%).
II: Operational Design:
The operational design of the study entails three main
phases:
A. Preparatory phase:
A review of the past and current local and international
related resources literature using books, journals, scientific
periodicals, magazines and online was done to develop the
study tool and to get acquainted with the various aspects of the
research problem.
Tool validity was evaluated by a jury of 3 experts in the
field of the study to assure its content validity.B. Exploratory phase:
A pilot study was conducted including 10% of the sample
size of mothers to get preliminary idea of the magnitude of the
problem. Results of the pilot study were helped in a necessary
modification of the used tool. All mothers and their children in the
pilot were excluded later for the study.
Field work:
The actual field work was carried out over 6 month’s
period from the first week of March, 2017 to the end of
August, 2017. The researcher was available in the abovementioned
setting by rotation 2days/week (Saturday and
Sunday) from 9 am to 2 pm.
Each mother was interviewed individually to gather the
necessary data of the study. The researcher started by introducing
herself to the mothers and a brief idea about the study and its
expected outcomes was introduced.
IV. Administrative Design
An official permission was obtained from the director of each
study setting through a formal letter that was issued by the Dean
of the Faculty of Nursing, Ain Shams University to the administrator of each study setting. The aim of the study and its
expected outcomes were explained.
Ethical Considerations:
The study was approved by the Scientific Research
Ethics Committee of the Faculty of Nursing/ Ain Shams
University. Also, an official permission to conduct the study
was secured from pertinent authorities. All participants gave
their oral approval to participate in the study. They were
secured that the study was harmless and the gathered data used
only for research purpose and their rights to refuse or withdraw
at any time without giving reasons.
IV. Statistical Design:
The data collected were revised, coded, tabulated and
statistically analyzed by using a number and percentages
distribution, means, standard deviation, frequencies correlation
and chi-square test were used to estimate the statistically
significant difference between variables of the study.