Assessment of Parents' Knowledge about Home Health Care Management to Children with Beta Thalassemia Major

Thalassemia is a hereditary condition that affects the formation of globin chains. Beta thalassemia is characterized by either a total loss of manufacture globin (β-thalassemia major) or a partial loss of globin manufacture (β-thalassemia minor). This type of inherited anemias is found in Mediterranean and Southeast Asian communities. Objective: Assessment of parents' knowledge regarding home health care management related to children with β-Thalassemia Major. Methodology: A descriptive study design was carried out at Thalassemia Center in Al-Najaf City during the periods 25 February 2021 to 15 March 2022. Non-probability (purposive) sample of (35) parents were selected from thalassemia center (22 mothers and 13 fathers). Results: The finding shows that 77.1% of parents are resident in urban. The monthly income, over than half (54.3%) of parents consider their income to be barely sufficient. The sources of information about disease among parents; (88.6%) of parents are getting information from medical team. The parents are demonstrating poor knowledge level in most domains about home health care management of child with beta thalassemia major. Conclusion: The current study shows that there is a significant inadequacy in the parents' knowledge of the child with beta thalassemia major. Recommendation: Providing educational guidelines, posters, pamphlets and manuals about thalassemia and should be available at each parents in wards and encourage parents to get use from them


INTRODUCTION
Hemoglobinopathies is an inherited defect in globin synthesis or structure. In homozygotes an abnormal globin chain is inherited from each parent leading to fragile RBCs with diminished lifespan. In heterozygotes the gene is inherited from one parent only . Chronic red cell transfusions were the only available treatment modality for thalassemia major until about 20 years ago and patients rarely survived beyond the age of 25 (Porter, 2018). There are around (200) distinct mutations that cause globin production to be absent or reduced. The 20 most prevalent aberrant alleles account for 80% of all known thalassemias worldwide; B-thalassemia alleles are found in 3% of the world's population, and 5-10% of the population has B-thalassemia alleles in Southeast Asia has alleles for athalassemia (Thompson, 2018). Cooley's anaemia it is otherwise known as beta thalassemia major. Normally one inherits one beta chain gene from each parent. When the genes inherited from both parents are defective Cooley's anaemia results. (ayanan, 2017). Hemoglobin and hematocrit levels are monitored, and packed red blood cells are transfused at regular intervals, are part of the treatment of children who have β -thalassemia major. Iron levels in the blood are also checked, and iron chelation therapy is administered. The main purpose of nursing care for children with thalassemia is to support the family while also limiting the illness's impact. This covers things like blood transfusions and family education. (Taher A. T., 2021).

METHOD
A Descriptive study design to assess the parents' knowledge about home health care management to children with Beta thalassemia-major. Had been applied during the period 25 February 2021 to 20 March 2022. In order to get valid and comprehensive data, the study has been done at Thalassemia Center in Al-Najaf City. This center provides free healthcare to children with thalassemia. Non-probability (purposive) sample of (35) parents were selected from thalassemia center in Al-zahra teaching hospital for maternity and children (22 mothers and 13 fathers). The content validity of the early produced instrument is determined by an expert panel that looks into the questionnaire's clarity, relevancy, and suitability in measuring the notion of interest. The questionnaire design is a preliminary version that was submitted to (16) specialists. The Pearson Correlation Coefficient was utilized to establish the instrument's reliability. Social Science Program (IBM SPSS) version 26.0 used to determine the reliability.
The questionnaire's reliability was statistically good, indicating that it had a sufficient level of internal consistency and equivalent measurability.

RESULTS
The residency variable shows in table (1) that 77.1% of parents are resident in urban. The occupational status shows the highest percentage to housewives mothers of children (=54.3%). The number of children in the family refers to four children or more as seen with highest percentage (48.6%). In addition to the monthly income, over than half of parents consider their income to be barely sufficient, as seen (54.3%).
The table (2) shows the sources of information about disease among parents; (88.6%) of parents are getting information from medical team. (2.9 %) of parents are getting information from books and magazine. (42.9 %) are getting information from internet. (5.7%) are getting information from media.
The table (3) displays that parents in the study group showing a poor level of knowledge about home health care of child with thalassemia (85.7%), fair knowledge (11.1%), and good level of knowledge (3.2%).
The table (4) indicates that among parents, is significant relationship with the sub-domain of parents' knowledge about definition, causes, and types of disease with regard to their residency at (p-value= .047.) The table (4) indicates the parents had a high significant relationship between their knowledge and its occupational status, at (p-value=.007) particularly the domains of -definition, causes, and types of disease‖ (p-value= .028) and -treatment prevention‖ (p-value=.047).
The table(5) demonstrates a significant relation among sub-domain of parents' knowledge about -treatment and prevention‖ with regard to their monthly income at (p-value= .011).
The table (6) demonstrates a high significant relation among parents' knowledge with regard to sources of information at p-value= .009 as seen among sub-domain of -Definition, causes,‖ Treatment and prevention -, Blood transfusion, -.

DISCUSSION
The current study shows the highest percentage to housewives mothers of children (54.3%). These findings agree with a study of (Abo Jeesh, Yousif, & Al-Haboub, 2018), who indicated that most the parents occupations (66.4%) were housewives mothers. The family's number of children refers to four children as seen with highest percentage (48.6%). These findings are consistent with those of a study of (Salih, 2014) who indicated that (60%) of his study has four or more children in the family. The parents shows poor knowledge level in most items, This result is consistent with (Moghadam, et al., 2016) who discover that the findings suggest that the experimental group had pre-test scores (63.4%) of subjects lacked knowledge. there is statistical significant relationship between the sub-domain of parents' knowledge with regard to their residency The findings of the study agree with those of a previous study (Habib, et al., 2018) who Showing higher significantly associated between Parents' knowledge, attitude, and practice with their residency. there is statistical significant relationship between knowledge of parents' with regard to their occupational status this result disagrees with (Hanon, 2015) That revealed working caregivers had significantly higher odds of having satisfactory knowledge regarding the disease. there is statistical significant relationship between parents' knowledge and regard to sources of information as seen among most subdomains, The study findings agree with study done by (Shaker, 2019) That revealed there is a clear association between parental knowledge, attitude, and practice with the Sources of information about thalassemia.

CONCLUSIONS
The parents in the study group are demonstrating poor of knowledge about home health care of child with thalassemia.

ETHICAL CONSIDERATIONS COMPLIANCE WITH ETHICAL GUIDELINES
Ethical approvals for the study were getting from the Scientific Research Ethics Committee at the College of Nursing and Ethics committee of the Al-Najaf health directorate and permission to conduct research to ensure their approval and collaboration for data collection of the parent's. All study participants are from Al najaf city sign the consent form.

FUNDING
This research did not receive any grant from funding agencies in the public, commercial, or non-profit sectors.

AUTHOR'S CONTRIBUTIONS
Study concept; Writing the original draft;Data collection; Data analysis and Reviewing the final edition by all authors