Assessment of Knowledge regarding Thalassemia and its Management among Caregivers in a Tertiary Care Setting in Central India
Sunita Chaware1, Prashant Chaware2
1Associate Professor, SAGE College of Nursing, Bhopal, Madhya Pradesh, India.
2Professor, Anatomy Department, AIIMS, Bhopal, Madhya Pradesh, India.
*Corresponding Author E-mail: prashantnchaware@gmail.com, chawaresunita@gmail.com
ABSTRACT:
Background: Thalassemia is a common inherited hemoglobin disorder and a major public health concern in India. Children with thalassemia major require lifelong blood transfusions, iron chelation therapy, and continuous monitoring, which places a significant caregiving burden on families. Nurses and other healthcare professionals play a central role in educating caregivers, supporting treatment adherence, and promoting preventive strategies such as carrier screening and prenatal diagnosis. However, inadequate caregiver knowledge remains a critical challenge in effective disease management and prevention. Aim: To assess the knowledge regarding thalassemia and its management among caregivers of thalassemic children. Objectives: 1. To assess the level of knowledge regarding thalassemia and its management among caregivers of children with thalassemia using standard questionnaire. 2. To determine the association between caregiver knowledge and selected socio-demographic variables. Methods: A descriptive cross-sectional study was conducted among 60 caregivers of children diagnosed with thalassemia attending the pediatric outpatient department of a tertiary care hospital. Data were collected using a validated structured interview schedule comprising socio-demographic variables and 30 multiple-choice questions related to thalassemia, its treatment, complications, and preventive measures. Knowledge scores were categorized as poor (0–10), average (11–20), and above-average/adequate (21–30). Data were analyzed using OpenEpi software, and associations were tested using the chi-square test, with statistical significance set at p < 0.05. Results: The findings revealed that 65% of caregivers had average knowledge, 25% had poor knowledge, and only 10% demonstrated above-average or adequate knowledge regarding thalassemia and its management. The mean knowledge score was 14, indicating moderate awareness with substantial informational gaps. Caregiver knowledge showed a statistically significant association with relationship to the child, educational status, occupation, family history of thalassemia, and history of consanguineous marriage (p < 0.05). Parents, caregivers with higher educational attainment, government-sector employees, and those with a family history of thalassemia exhibited significantly better knowledge. Print media was the most commonly reported source of information. Conclusion: The study highlights inadequate caregiver knowledge regarding thalassemia and its management despite ongoing interaction with healthcare services. From a nursing and public health perspective, these findings emphasize the need for structured caregiver education, nurse-led counseling, and community-based awareness programs focusing on disease management and prevention. Integrating targeted health education into routine nursing care and strengthening preventive strategies can enhance caregiver competence, improve treatment adherence, and contribute to reducing the long-term burden of thalassemia in resource-limited settings.
KEYWORDS: Thalassemia, Caregivers, Knowledge assessment, Genetic disorders, Health awareness.
INTRODUCTION:
Thalassemia comprises a group of inherited hemoglobin disorders characterized by reduced or absent synthesis of globin chains, leading to ineffective erythropoiesis and chronic anemia.1 Based on the affected globin chain, thalassemia is broadly classified into alpha and beta types, with beta-thalassemia showing wide clinical variability ranging from asymptomatic carrier states to severe transfusion-dependent disease.1
Globally, hemoglobinopathies represent one of the most common monogenic disorders, with hundreds of thousands of affected births occurring annually.1 A significant proportion of this burden is borne by low- and middle-income countries.2 India contributes substantially to the global prevalence, with millions of carriers and a considerable number of children born each year with severe forms of the disease.3 Certain ethnic and regional populations demonstrate even higher carrier frequencies, making thalassemia a major public health concern.4
Beta-thalassemia major, the most severe form, results from mutations affecting both β-globin genes, leading to severe anemia that requires lifelong blood transfusion therapy.5 Although advances in transfusion safety and iron chelation have improved survival, the disease continues to impose a heavy financial, psychological, and social burden on affected families.6 Curative treatment through hematopoietic stem cell transplantation remains limited due to cost and donor availability.7
Given these challenges, prevention through awareness, carrier screening, genetic counseling, and prenatal diagnosis remains the most effective strategy for reducing disease burden.8 However, studies conducted in different regions of India have consistently demonstrated inadequate awareness regarding thalassemia, even among high-risk populations.9 Misconceptions about the disease, its inheritance, and prevention strategies are still prevalent.10 Caregivers of thalassemia patients play a pivotal role in disease management, adherence to treatment protocols, and decision-making regarding future pregnancies.11,12 Despite their frequent interaction with healthcare systems, their level of understanding about the disease is often insufficient.13 Several studies conducted in nursing and healthcare settings have consistently reported inadequate knowledge among caregivers regarding disease management and preventive strategies.14,15,16,17 Studies assessing caregiver knowledge in conditions such as epilepsy, asthma, dialysis care, and hospice care have demonstrated significant gaps despite regular interaction with healthcare services14,15,16,17. Similar findings have been reported in thalassemia-specific research, where caregivers showed limited understanding of disease inheritance, complications, and prevention strategies18,19,20,21,22. Educational interventions such as structured teaching programmes and informational booklets have been shown to significantly improve caregiver knowledge and practices 23,24,25 highlighting the need for systematic health education approaches in clinical settings.
There is need to assess caregiver’s knowledge for identifying gaps and designing targeted educational interventions. So, the present study was conducted to evaluate the knowledge of caregivers regarding thalassemia and its management in a tertiary care setting in central India, with the aim of informing strategies for improving awareness which can help in prevention and effective management of thalassemia.
MATERIALS AND METHODS:
Study Design: A hospital-based descriptive cross-sectional study.
Study Setting: The study will be conducted in the Pediatric Outpatient Department of a tertiary care teaching hospital in Central India.
Study Population: Caregivers of children diagnosed with thalassemia attending the pediatric department during the study period.
Sample Size: A total of 60 caregivers were included in the study.
Sampling Technique: A convenient sampling technique was used to recruit eligible participants.
Inclusion Criteria:
· Caregivers of children diagnosed with thalassemia.
· Caregivers accompanying the child during hospital visit.
· Age ≥18 years.
· Willing to participate and provide informed consent.
Exclusion Criteria:
· Caregivers who are seriously ill or unable to communicate.
· Caregivers who refuse to participate.
· Healthcare professionals accompanying the child.
Study Tool:
Data were collected using a structured interview schedule developed after an extensive literature review, expert consultation, and prior teaching experience of the investigators. The tool underwent content validation by pediatricians and faculty from child health nursing, and necessary modifications were incorporated.
The instrument consisted of two sections:
Section A included socio-demographic details, while Section B consisted of 30 multiple-choice questions assessing knowledge of thalassemia and its management.
Each correct response was awarded one point and incorrect responses received zero. Based on total scores, knowledge was categorized as poor (0–10), average (11–20), and above average/adequate (21–30).
Data collection involved personal interviews, with approximately 5–6 caregivers interviewed per day. Each interview lasted 20–30 minutes.
Data Collection Procedure:
After obtaining institutional ethical approval and informed written consent from participants, eligible caregivers were interviewed individually. Approximately 5–6 participants were interviewed per day.
Ethical Considerations:
Ethical clearance was obtained from the Institutional Ethics Committee. Written informed consent was obtained from all participants. Participation was voluntary and participants were free to withdraw at any stage without any consequences.
Statistical Analysis:
Data were analyzed using OpenEpi software. Continuous variables are presented as Mean±Standard Deviation (SD), and categorical variables are expressed as frequency (N) and percentage (%).
Associations between categorical variables were assessed using the Chi-square test (χ˛ test), and comparisons of means were performed using the unpaired t-test where applicable. A p-value <0.05 was considered statistically significant.
RESULTS:
Socio-Demographic Characteristics:
A total of 60 caregivers (N=60, 100%) participated in the study. The majority belonged to the age group of 41–50 years (23, 38.33%). Female caregivers constituted 32 (53.33%), while 41 (68.33%) were parents (father or mother). Most participants were Hindu (28, 46.66%), and 21 (35%) had education at graduation level or above.
Regarding occupation, 26 (43.33%) were engaged in private service, and 23 (38.33%) belonged to a low-income group (₹5,000–15,000/month). A family history of thalassemia was present in 41 (68.33%), while 14 (23.33%) reported consanguineous marriage. Print media was the most common source of information (26, 43.33%).
Knowledge Assessment:
Out of 60 caregivers; 15 (25%) had Poor knowledge, 39 (65%) had Average knowledge and only 6 (10%) had adequate knowledge. The mean knowledge score was 14, indicating overall moderate awareness.
Association between Knowledge Score and selected Socio Demographic Variables:
The association between knowledge score and selected socio -demographic variables was found by using “Chi-square test”. The result showed the statistically significant association between knowledge about thalassemia and relation of caregiver with patient, education, occupation, history of thalassemia in family and history of consanguineous marriage. First degree relatives (mother or father) were having significantly higher score as compared with other relatives accompanying the patient. People of Christian and Sikh religions were having higher knowledge as compared with other religions. Well educated (graduation and above) people were having significantly higher knowledge compared with illiterate and less educated people. People working in government sector were having higher knowledge people than working in other sectors. When there was any history of thalassemia in the family, the individuals from such families were having very significantly higher knowledge about thalassemia as compared with those without such history. We found significant Association between history of consanguineous marriage and knowledge of thalassemia. Individuals no history of consanguineous marriage were found to have significantly higher knowledge as compared with people had such history.
Table 1: Association between caregiver characteristics and knowledge level
|
Variable |
Category |
Knowledge |
Total n (%) |
||
|
Poor n (%) |
Average n (%) |
Adequate n (%) |
|||
|
Age |
20–30 |
4 (6.67%) |
5 (8.33%) |
0 (0%) |
9 (15.00%) |
|
31–40 |
5 (8.33%) |
7 (11.67%) |
6 (10.00%) |
18 (30.00%) |
|
|
41–50 |
3 (5.00%) |
20 (33.33%) |
0 (0%) |
23 (38.33%) |
|
|
51–60 |
3 (5.00%) |
7 (11.67%) |
0 (0%) |
10 (16.67%) |
|
|
Gender |
Male |
6 (10.00%) |
18 (30.00%) |
4 (6.67%) |
28 (46.67%) |
|
Female |
9 (15.00%) |
21 (35.00%) |
2 (3.33%) |
32 (53.33%) |
|
|
Relation |
Parent |
6 (10.00%) |
31 (51.67%) |
6 (10.00%) |
43 (71.67%) |
|
Others |
9 (15.00%) |
8 (13.33%) |
0 (0%) |
17 (28.33%) |
|
|
Education |
Illiterate |
5 (8.33%) |
5 (8.33%) |
0 (0%) |
10 (16.67%) |
|
≤10th |
5 (8.33%) |
11 (18.33%) |
0 (0%) |
16 (26.67%) |
|
|
≥Graduate |
1 (1.67%) |
14 (23.33%) |
6 (10.00%) |
21 (35.00%) |
|
|
Occupation |
Labour |
6 (10.00%) |
3 (5.00%) |
0 (0%) |
9 (15.00%) |
|
Private |
4 (6.67%) |
14 (23.33%) |
2 (3.33%) |
20 (33.33%) |
|
|
Govt |
1 (1.67%) |
10 (16.67%) |
3 (5.00%) |
14 (23.33%) |
|
|
Family History |
Yes |
4 (6.67%) |
32 (53.33%) |
5 (8.33%) |
41 (68.33%) |
|
No |
11 (18.33%) |
7 (11.67%) |
1 (1.67%) |
19 (31.67%) |
|
|
Consanguinity |
Yes |
7 (11.67%) |
7 (11.67%) |
0 (0%) |
14 (23.33%) |
|
No |
8 (13.33%) |
32 (53.33%) |
6 (10.00%) |
46 (76.67%) |
|
DISCUSSION:
The present study evaluated the knowledge regarding thalassemia and its management among caregivers of thalassemic children attending a tertiary care hospital in Central India. The findings revealed that the majority of caregivers possessed only average knowledge, while a considerable proportion had poor awareness regarding the disease, its inheritance, management, and preventive measures. These findings indicate persistent gaps in caregiver understanding despite regular interaction with healthcare services.
The results of the present study are consistent with the observations made by Williams S and colleagues (2017)18, who reported inadequate knowledge among caregivers of thalassemic children in selected hospitals at Mysore. Similar findings were also documented by Basu M (2015)11, who observed limited awareness regarding thalassemia among the general population attending a tertiary care hospital in Kolkata. These studies support the present findings that awareness regarding thalassemia remains suboptimal in India despite increasing disease burden.
The moderate level of knowledge observed in the present study may be attributed to repeated hospital visits and interaction with healthcare professionals during transfusion therapy. However, routine clinical exposure alone appears insufficient for developing comprehensive understanding of disease inheritance, complications, and preventive strategies. Comparable observations have been reported by Behera SK et al. (2016)13, who emphasized that passive dissemination of information alone does not significantly improve awareness regarding thalassemia prevention and control.
The present study demonstrated a significant association between educational status and caregiver knowledge. Caregivers with graduation-level education and above exhibited significantly higher knowledge scores compared to illiterate and less educated participants. Similar findings were reported by Choudhury O et al. (2025)9, who found that educational attainment strongly influenced knowledge, attitude, and practices related to beta-thalassemia among young adults in Delhi-NCR. Higher literacy levels likely improve comprehension of genetic inheritance, screening procedures, and treatment protocols.
A statistically significant association was also observed between caregiver relationship and knowledge level, with parents demonstrating better awareness than other relatives. This finding is in agreement with previous studies showing that primary caregivers tend to acquire greater disease-related knowledge because of their direct involvement in treatment decisions and routine care of the child.
The present study further identified a significant association between family history of thalassemia and caregiver knowledge. Participants with affected family members demonstrated better understanding of the disease, possibly due to previous exposure to counseling and healthcare services. Similar observations have been documented in earlier studies assessing awareness and preventive behavior related to hereditary disorders.
Interestingly, caregivers without a history of consanguineous marriage demonstrated better knowledge regarding thalassemia. This finding highlights the need for targeted genetic counseling and awareness programmes in communities where consanguineous marriages are prevalent. Previous studies have also emphasized the importance of community-based education and premarital counseling in reducing the burden of inherited hemoglobin disorders.
The findings of the present study are also supported by studies conducted in other healthcare settings involving chronic diseases. Kaur N et al. (2015)14, Suresh D et al. (2017)15, and Sowmya SP (2024)16 reported inadequate caregiver knowledge regarding post-dialysis care, epilepsy management, and hospice care respectively. These findings suggest that caregiver knowledge deficits are common across chronic disease conditions and reinforce the need for structured educational interventions.
Educational interventions have been shown to improve caregiver awareness significantly. Studies by Bhatia S and Sharma DK demonstrated that planned teaching programmes and informational booklets effectively enhanced caregiver knowledge and caregiving practices. These observations support the need for nurse-led counseling sessions, structured health education, and regular awareness programmes in thalassemia clinics.
Overall, the findings of the present study emphasize the urgent need to strengthen caregiver education regarding thalassemia and its prevention. Integration of structured counseling, carrier screening awareness, genetic counseling, and preventive education into routine healthcare services may improve disease understanding, treatment adherence, and prevention strategies, thereby contributing to reduction of the long-term burden of thalassemia in resource-limited settings.
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Received on 23.04.2026 Revised on 26.05.2026 Accepted on 25.06.2026 Published on 30.07.2026 Available online from August 05, 2026 Int. J. Nursing Education and Research. 2026;14(3):199-203. DOI: 10.52711/2454-2660.2026.00040 ©A and V Publications All right reserved
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