A Study was to assess the Knowledge of Caregivers Regarding Thalassemia in Selected Hospital at Mysore with a view to Develop Information Booklet

 

Prof. Sheela Williams¹, Mrs. Saraswathi. K. N², Mrs. Lissa J²

¹Principal, JSS College of Nursing, Mysore

²Assistant Professor, JSS College of Nursing, Mysore

 

ABSTRACT:

Back Ground of the Study: Thalassemia is an inherited blood disorder characterized by defective production of hemoglobin and excessive destruction of red blood cells, which lead to anemia. All forms of thalassemia like thalassemia minor, thalassemia major, β–thalassemia–thalassemia are transmitted only through heredity. A symptom varies according the subtypes of it. The treatment includes frequent and lifelong blood transfusions, together with iron chelation. The main aim of the study was to assess the knowledge of caregivers regarding thalassemia in selected hospital at Mysuru with a view to develop information booklet”. Objectives: 1. To assess the knowledge of caregivers regarding thalassemia. 2. To find the association between the level of knowledge of caregivers regarding thalassemia with their selected personal variables. 3. To develop an information booklet regarding thalassemia. Methodology: Based on the nature of the problem and objectives of the study the research approach chosen for the study is descriptive approach.60 samples were selected by non probability convenience sampling technique. The tools used for data collection consisted of proforma for socio-demographic data and structured knowledge questionnaire. Validity of the tool was appraised by four experts and was found to be valid for the study with required modification. Reliability of structured knowledge questionnaire was done using split half method and found 0.89 and the tools were found reliable. The pilot study was conducted to assess the feasibility of the study design at selected hospital of Mysuru. The collected data was analyzed on the basis of the objectives and hypothesis of the study by using descriptive and inferential statistics. Results: The findings revealed that 38(63.4%) caregivers had good level of knowledge and 21(35%) had average level of knowledge and1 (1.6%) had poor level of knowledge regarding thalassemia. The knowledge level ranged from 11-27.The mean knowledge level score was 20.10with standard deviation of +_10.4.The study findings also revealed that there is no significant association between the level of knowledge of caregivers regarding thalassemia with the variables like age, gender, education status, occupation, family monthly income, relationship with the child, duration of illness, any exposure to health education programme regarding thalassemia and source of information. Discussion: The study findings concluded that majority of caregivers 38(63.4%) had good level of knowledge regarding thalassemia.

 

 

 

INTRODUCTION:

Among all the childhood diseases, hematological and hereditary diseases are most life threatening diseases conditions which affects in their early life. Problem of Haemoglobinopathy in India was first described by Professor J.B. Chatterjee who initiated thalassemia diagnosis and research work in West Bengal in 1959 he described that the incidence of HbE and Beta thalassaemia trait in West Bengal was 3.9 % and 3.7% respectively.¹Thalassemia is the most common single gene disorder and most common hereditary disease in the world that is considered as one of the health problems in India due to its high prevalence.² Thalassemia is an inherited blood disorder characterized by defective production of hemoglobin and excessive destruction of red blood cells, which lead to anemia.³ Due to the chronic nature of this disease, like other chronic diseases, in spite of its physical symptoms, it gives rise to socio-psychological congenital problems and creates economical problems for patients and their families. Therefore it is necessary to identify the needs of thalassemic children parents.¹

 

NEED FOR THE STUDY:

A WHO update on β-thalassemia in India indicated a similar overall carrier frequency of 3–4%, which given the current national population would translate to between 35.6 and 47.5 million carriers of the disorder nationwide. β-thalassemia is prevalent in Mediterranean countries, the Middle East, Central Asia, India, Southern China and countries along the north coast of Africa and in South America.³ β-thalassemia is the commonest single-gene disorder in the Indian population. 10% of the total worlds thalassemic are born in India every year. Certain communities in India, like Sindhis, Gujratis, Punjabis, and Bengalis, are more commonly affected with beta thalassemia, the incidence varying from 1 to 17%. It has been estimated that the prevalence of pathological hemoglobinopathies in India is 1.2/1,000 live births, and with approximately 27 million births per year this would suggest the annual birth of 32,400 babies with a serious hemoglobin disorder.⁴

 

OBJECTIVES:

1.     To assess the knowledge of caregivers regarding thalassemia.

2.      To find the association between the level of knowledge of caregivers regarding thalassemia with their selected personal variables.

3.     To develop an information booklet regarding thalassemia.

 

METHODOLOGY:

Permission for conducting the study was obtained the ethical committee of the college, Medical Superintendent, HOD of Pediatrics and Deputy Chief of nursing services of JSS Hospital, Mysuru. The data collected was from 01.06.2016 to 30.06.2016. To obtain the free and true response, the care givers were explained about the purpose and usefulness of the study and assurance about the confidentiality of their responses was also provided. An informed consent was obtained from each care givers to indicate their willingness to participate in the study. 60 care givers who met the inclusion criteria were selected as per sampling technique. The level of knowledge regarding thalassemia was assessed through administering structured knowledge questionnaires and information booklet was distributed for care givers of thalassemia.

 

Research Design:

The research design selected for study was descriptive design.

 

Sampling Technique:

Convenience sampling technique

 

Sample:

Sample size was 60.

 

VARIABLES:

The main variables of study are:

 

Knowledge Regarding Thalassemia:

The selected personal variables in the study are age, gender, education status, occupation, family monthly income, relationship with the child, duration of illness, any exposure to health education programme regarding thalassemia and source of information.

 

Setting:

JSS hospital, Mysore

 

Description of the Tool:

Part I:

It comprised of demographical variables age, gender, education status, occupation, family monthly income, relationship with the child, duration of illness, any exposure to health education programme regarding thalassemia and source of information.

 

Part II:

Structured knowledge questionnaire regarding  thalassemia

 

Score interpretation:

The maximum score was 20. To interpret level of knowledge the scores were distributed as follows:

1.        Inadequate knowledge     <  50%

2.        Moderately knowledge   50-75%

3.        Adequate knowledge     > 75%

 

RESULTS:

Section 1: Demographic variables

Table: 1 .1 Frequency and percentage distribution of caregivers according to their personal variables n=60

Age (in years)	frequency	(%)
1.1. Below 30	22	36.7
1.2. 30-50	30	50
1.3. Above 50	8	13.3
2. Gender
2.1. Male	28	46.7
2.2. Female	32	53.3
3. Religion
3.1. Hindu	54	90
3.2. Christian	3	5
3.3. Muslim	3	5
4. Education level
4.1. Illiterate	2	3
4.2. Primary	4	7
4.3.Higher primary	27	45
4.4.PUC & Above	27	45
5. Occupation
5.1. Employee	12	20
5.2  Self employee	18	30
5.2. Homemaker	30	50
6. Family monthly income26
6.1. Below Rs5000	12	20
6.2. Rs 5000-6000	24	40
6.3.Rs6000-9000	14	23.3
6.4.Rs above9000	10	16.7
7. Relationship with the child
7.1. Parent	51	85
7.2. Grandparent	9	15
8. Duration of illness
8.1.0-2 yrs	6	10
8.2.2- 4yrs	26	43
8.3.4-6 yrs	18	30
8.4.Above 4 yrs	10	17
9. Previous exposure
9.1. Yes	2	3
9.2. No	58	97
10. Source of information
10.1. Doctor	59	98
10.2. Health personnel	1	2
10.3.relatives	0	0

 

Section 2: Description of knowledge:

TABLE 2: Frequency and percentage distribution of caregivers on knowledge regarding thalassemia n=60

Level of knowledge	Classification of nurses
	Frequency	Percentage
Inadequate knowledge (<50%)	1	1.6
Moderate knowledge (51-75%)	21	35
Adequate knowledge (>75% )	38	63.4

Table-2 shows that 1.6% of caregivers has poor level of knowledge, 35% had average level of knowledge and 63.4% had good level of knowledge

 

Table 3 Mean, median, standard deviation and range of knowledge scores of caregivers regarding thalassemia n = 60

Mean	Median	Range	SD
20.10	14.24	10-27	+_10.4

 

Section 3:

Association between levels of knowledge of caregivers regarding thalassemia with their selected personal variables, chi square was computed. The selected personal variables such as age, gender, educational qualification, occupation, family income, relationship with the client, since how many years, exposure to any educational programme and source of information were not having any significant association with the level of knowledge of caregivers regarding thalassemia.

 

CONCLUSION:

The study concluded that caregivers 1(1.6%) has poor level of knowledge, 21(35%) has average level of knowledge and 38(63.4%) has good level of knowledge. It also revealed that knowledge score ranged from 10-27, the mean knowledge score is 20.10 with a SD of ± 10.4. In chi-square there was no significant association between the knowledge of caregivers regarding thalassemia with their selected personal variables. Thus, it was concluded that, the information booklet was useful; therefore, the study reinforces the need to organize health camps and teaching programs which sensitize the caregivers to enhance the knowledge regarding thalassemia.

 

RECOMMENDATIONS:

The following recommendations were made based to the results of the study on the basis of the finding of the study it is recommended that:

1.         Similar study can be carried out on a larger sample for broader generalization.

2.        Similar study can be conducted to assess the prevalence, knowledge and practice among caregivers of thalassemia.

3.        Awareness programme can be organized for parents and general population regarding thalassemia.

4.        A similar survey may be replicated on a large sample for better generalization of result.

5.        A comparative study can be conducted on knowledge regarding thalassemia among the caregivers, nursing teachers, students and other health care professionals and public.

 

ACKNOWLEDGMENT:

This was project conducted by Deepthi, Devikarani and Thriveni of post basic BSc nursing students of JSS College of nursing as a part of their requirement.

 

REFERENCE:

1.        Dr. Mausumi Basu. A study on knowledge, attitude and practice about thalassemiaamong general population in outpatient department at tertiary care hospital of Kolkata. Journal of preventive medicine and holistic health, 2015; 1( 1):6-13

2.        Dr. Sharmila Ghosh .pdf-PD hinduja hospital. [Homepage of the internet] 2016[cited May 20] Availablefrom:www.hindujahospital.com/communityportal/articles/articles-download.aspx?ridJ.

3.        Wikipedia. Thalassemia.[homepage on internet]2012[cited 2016 Jun6].Available from: http/er.wikipedia.org/wiki/thalassemia

4.        Mitchell. J. weiss. Update on diagnosis and management of thalassemia. clinical advances in hematology and oncology.2014;12(1):www.hematology and oncology.net

 

 

 

Received on 04.01.2017          Modified on 15.01.2017

Accepted on 15.02.2017         © A&V Publications all right reserved