الفهرس 
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Abstract
Thalassemia is an inherited blood disorder caused when the body doesn’t make enough of a protein called hemoglobin, an important part of red blood cells. When there isn’t enough hemoglobin, the body’s red blood cells don’t function properly and they last shorter periods of time, so there are fewer healthy red blood cells traveling in the bloodstream. Red blood cells carry oxygen to all the cells of the body. Oxygen is a sort of food that cells use to function. When there are not enough healthy red blood cells, there is also not enough oxygen delivered to all the other cells of the body, which may cause a person to feel tired, weak or short of breath. This is a condition called anemia. People with thalassemia may have mild or severe anemia. Severe anemia can damage organs and lead to death (oola, 2020).
Classically, thalassemia affecting population across thalassemia built which extends from the Mediterranean region through Middle East and Sub-Saharan Africa to South and Southeast Asian countries. Nowadays, thalassemia occurs all over the world because of continual migrations of population from these areas to western countries. Thalassemia affects both sexes equally, occurring approximately in 4.4% of every 10,000-live birth and accounting for about 60,000–70,000 children each year who born with different types of thalassemia. The global distribution of the various globin gene mutations poses a number of interesting and important conundrums. The chronicity of the disease and the high cost of life-long treatment make prevention strategies crucial in the management of this disease. This requires intervention in high risk/targeted populations (Angastiniotis, 2019).
Blood transfusion is the mainstay of the care for individual with thalassemia major and many with intermediate. The purpose of transfusion is twofold: to improve the anemia and to suppress the ineffective erythropoiesis. chronic transfusions prevent most of the serious growth, skeletal and neurological complications of thalassemia major. In spite of its vital role in saving lives and enhancing patients’ lives, blood transfusion is associated with risks. Making mistakes in blood transfusion and insufficient control of patients who receive blood during the transfusion can lead to death for such patients. So, standards of safe blood transfusion must be developed and maintained to ensure a safe and rational approach to the use of blood transfusions in the management of these disorders, also careful consideration must be given to the associated dangers) Taylor et al, 2019).
Aim of the study
The aim of this study is to evaluate the outcome of nursing intervention program for mothers toward care of their children with thalassemia through: -
1. Assessing health needs and problems of children suffering from thalassemia.
2. Assessing mother’s knowledge and reported practices regarding thalassemia.
3. Designing and implementing nursing intervention programs for mothers having children with thalassemia.
4. Evaluating the effect of nursing intervention programs on mothers’ knowledge and reported practice toward care of their children with thalassemia and their health status.
Research hypotheses
The nursing intervention program for mothers having children with thalassemia will improve their knowledge and reported practices toward care of their children which have a positive effect on their health status.
Subjects and Methods
Research design: -
A Quasi-experimental research design was utilized to fulfill the aim of this study.
1-Technical Design:
A-Research Setting:
The study was conducted in Pediatric Specialist Clinics (Hematology clinic) at El-Demerdash Children’s Hospital, affiliated to Ain Shams University hospitals Cairo Governorate, Egypt.
Sampling:
Sample size: -
A purposive sample was used for choosing the study subjects. The sample size was 75 mother of children diagnosed with thalassemia, which represents 25% out of the total annual average of children attending the hematology clinic, (300) children diagnosed with thalassemia where follow-up and medical treatment are carried out in the previously mentioned setting.
The study sample was Chosen according to the following criteria: including children diagnosed with thalassemia aged from 6-12 years old.
Technique: -
It is a non-probability sample that is selected based on criteria and agreement to participate in the study. where cases are selected until the specified number of the sample is completed.
B- Data collection tools:
Three tools were used to conduct this study after reading related literature and taking expert’s opinion, it was written in Arabic language.
First tool: An interviewing questionnaire it includes five parts as follow.
Part I a(:The demographic data of the studied children: as age, gender, going to school, educational level and child’s ranking among his/her siblings (Q1:Q5).
Part I b(: The socio-demographic data of the studied children’ mothers: as age, social status, Consanguinity, consanguinity degree, living place, education level, type of work, monthly income, and home crowding index (Q6:Q16).
Part II: This part consisted of 25 closed ended questions to assess the past and present medical history and family history including: the onset of disease, how was the disease discovered, family history of thalassemia, symptoms at beginning of the disease, past history of allergy, another diseases, abdominal ultrasound done, enlarged liver and spleen (Hepatosplenomegaly), allergic reaction post blood transfusion, symptoms of allergy experienced by the child, type of medications, and its complications (Q1: Q10).
Part III: The assessment of current health needs and problems which consisted of 10 close ended questions including: nutrition, number of meals per /day, the content of meals, sleeping hours/day, sports, and leisure, practicing physical activities, and its types, also if child feel any symptoms after doing an effort, favorite hobbies, and compliance of medications (Q1: Q10).
Part IVa: This part developed to assessed the mother’sknowledge about thalassemia which consisted of 16 closed ended including: meaning of thalassemia, causes, symptoms and signs, methods of treatment, complications of thalassemia and its methods of prevention, also mothers’ knowledge about medication therapy of thalassemia such as: medications delayed symptoms, complications of frequent blood transfusion, problems of increasing iron in the blood, methods to identify high iron level, iron deficiency medication’s function (Desferal or Jedneu), side effects of iron deficiency medications, and its contra indication, also methods of elimination of the accumulated iron in the body and the mothers’ sources of information (Q1: Q15).
Part IV b: This part developed to assess the mothers’ knowledge about factors of non-adherence to thalassemia treatment, four questions included in this part the consequence of failure to adhere to treatment, family-specific factors that affect the treatment of the child, factors specific to treatment, and factors specific to the place where health care is provided to the child(Q1: Q4).
Second tool: Child’s medical record (hematology follow up card) to collect data about lab investigation and treatment. Adhering to the treatment plan, follow up regularly to the hematology clinic.
Third tool: child’s physical Assessment sheet to assess physical health status of the children including: height, weight, BMI, head circumference, hair density texture, flashing, face, mouth, teeth, lymph nodes, skin, temperature, respiratory system, the digestive system, musculoskeletal system, nervous system, and the cardiac system.
The results
The results of the present study could be summarized as follows:
- The study result reveals that 34.7% of the studied children, their age was ranged from 8 < 10 year, and 55% of them were female, as well as all studied children 100% went to school.
- The study proved that 36.0% of fathers worked irregular jobs, while 90.7% of mothers never worked, which reflected that 89% of the family had children with thalassemia their monthly income was not enough.
- Aside from that 78.7% of the studied children were diagnosed with β-Thalassemia major (Cooley’s anemia) and 21.3% of them were thalassemia intermedia. Also 79% of the studied children were taken of |Jadenu 360 mg.
- The study results proved that there were highly statistically significant differences related mothers’ total knowledge and reported practices about care of thalassemia pre and post program with X2 =.91.679 and p value < 0.0001.
- There was a statistically significant relation between demographic characteristics of the studied children and their total mothers’ knowledge of thalassemia preprograms intervention related to their gender with X2 = 10.634 and P value >0.005 but insignificant post program.
- While insignificant statistical relation between demographic characteristics of the studied children and their total reported mothers’ practices.
- Also, there was insignificant statistical correlation between the complications of thalassemia among studied children and their total mothers’ knowledge/ reported practices about thalassemia pre and post program intervention.
- Finally, the study proved that highly statistically significant positive correlation between total mothers’ knowledge about thalassemia and their total reported mothers’ practices about care of thalassemia pre and post program intervention with r = 0.452 and 0,751 respectively and p value >0.001