Knowledge, Attitudes, And Practices Among Caregivers of Children With Β-Thalassemia Major: A Cross-Sectional Study
Keywords:
β-thalassemia major, Knowledge Attitudes and Practices, genetic counselling, premarital screening, caregiver awareness, psychosocial impactAbstract
Background: β-thalassemia major (BTM) is a severe inherited blood disorder requiring lifelong blood transfusions and comprehensive disease management. In India, high rates of consanguinity and inadequate premarital screening contribute to the persistent burden of thalassemia. Caregivers' knowledge, attitudes, and practices (KAP) are pivotal in shaping preventive behaviours and long-term outcomes.
Objective: To assess the knowledge, attitudes, and practices of caregivers of children with β-thalassemia major and identify gaps that may inform future community-based prevention strategies.
Methods: A cross-sectional, observational study was conducted at a tertiary care thalassemia clinic and through community-based home visits. Using a pre-validated, semi-structured questionnaire, data were collected from 222 caregivers and analyzed using descriptive statistics.
Results: While 80.6% of caregivers were informed about thalassemia, only 13.1% had prior awareness before their first affected child. Premarital screening was supported by 83.7%, and 64.4% valued genetic counseling. However, 43.7% lacked an understanding of carrier marriage risks. Practices such as parental testing (67.6%) and sibling screening (84.7%) were encouraging. Social stigma (50%) and psychological distress (42.8%) were prevalent, yet mental health support uptake remained low (10.8%).
Conclusion: Despite high caregiver engagement, substantial risk perception and psychosocial support gaps persist. Targeted genetic education and counselling are essential for sustainable thalassemia prevention
Downloads
Metrics
References
Benetatos L, Alymara V, Vassou A, Bourantas KL. Malignancies in beta-thalassemia patients: a single-center experience and a concise review of the literature. Int J Lab Hematol. 2008;30(2):167–72.
Northern California Comprehensive Thalassemia Center. Genetics of Thalassemia - Thalassemia Trait [Internet]. Available from: http://thalassemia.com/geneticstrait.aspx#gsc.tab=0. Accessed 29 Apr 2015.
Vang P, Zongrum O, Sindhuphak R, Dusitsin N. Preliminary study on thalassemia screening and genetic counseling in selective Hmong people in Saraburi Province, Thailand. Hmong Stud J. 2007;8:1–19.
Weatherall DJ, Clegg JB. The thalassemia syndromes. 4th ed. Oxford: Blackwell Scientific Publications; 2008.
Flint J, Harding RM, Boyce AJ, Clegg JB. The population genetics of the hemoglobinopathies. Baillieres Clin Haematol. 1993;6(1):215–62.
Modell B, Darlison M. Global epidemiology of haemoglobin disorders and derived service indicators. Bull World Health Organ. 2008;86(6):480–7.
Grow K, Vashist M, Abrol P, Sharma S, Yadav R. Beta thalassemia in India: current status and the challenges ahead. Int J Pharm Pharm Sci. 2014;6(4):28–33.
Bashyam MD, Bashyam L, Savithri GR, Gopikrishna M, Sangal V, Devi AR. Molecular genetic analyses of beta thalassemia in South India reveal rare mutations in the beta globin gene. J Hum Genet. 2004;49:408–13.
World Health Organization. Guidelines for the control of hemoglobin disorders: report of the VIth annual meeting of the WHO Working Group on Hemoglobinopathies, Cagliari, Sardinia, 8–9 April. Geneva: WHO; 1989. p. 2.
Chatterjee JB, Saha AK, Ray RN, Ghosh SK. Hemoglobin E-thalassemia disease. Indian J Med Sci. 1957;11:553–64.
Ahmed N, Khan BA, Bukhari SW, Khan KS, Sabir T, Nazir MB, et al. Knowledge, Attitude and Practices (KAP) of the Families of B-Thalassemia Patients in a Thalassemia Center of Karachi. Int J Curr Med Pharm Res. 2020;6(02A):4972–6.
Basu M. A Study on Knowledge, Attitude and Practice about Thalassemia among General Population in Outpatient Department at a Tertiary Care Hospital of Kolkata. J Prev Med Holist Health. 2015;1(1):5–12.
Ullah N, Rahat MA, Saif S, Rehman HU, Rasool A, Akbar F, et al. Knowledge, Attitudes and Practices Regarding the Prevention of Thalassemia in Parents of Thalassemic Children in Swat. Pak J Biochem Biotechnol. 2023;4(1).
Angeline R, Elavarasi G, Baby A, Shanmugasundaram D. Assessing knowledge on thalassemia for prevention and control among tribal population in Sitteri hills, Tamil Nadu. Int J Community Med Public Health. 2020;7(4):1577–81.
Downloads
Published
How to Cite
Issue
Section
License
This work is licensed under a Creative Commons Attribution 4.0 International License.
You are free to:
- Share — copy and redistribute the material in any medium or format
- Adapt — remix, transform, and build upon the material for any purpose, even commercially.
Terms:
- Attribution — You must give appropriate credit, provide a link to the license, and indicate if changes were made. You may do so in any reasonable manner, but not in any way that suggests the licensor endorses you or your use.
- No additional restrictions — You may not apply legal terms or technological measures that legally restrict others from doing anything the license permits.
