Knowledge and Attitudes Towards Thalassemia Screening Awareness: A Study on Teenagers From Extended Families Affected by Thalassemia
DOI:
https://doi.org/10.52783/jns.v14.1762Keywords:
awareness, knowledge, attitude, screening, thalassemiaAbstract
Currently, there is no cure for Thalassemia; however, preventing marriages between carriers can help reduce the birth of children with thalassemia major. Early screening for Thalassemia is essential for this preventive measure. This study employs a quantitative analytical observational design with a cross-sectional approach. The sample comprises 120 teenagers from Tegal City, Central Java, selected through purposive sampling. Data were collected via a questionnaire assessing knowledge and attitudes towards thalassemia screening and analyzed using univariate and bivariate methods with SPSS software. The results show that 52.7% of participants demonstrated exemplary knowledge about thalassemia, while the majority (80.5%) displayed a positive attitude toward thalassemia screening. Furthermore, 86.4% of respondents expressed their intention to check their carrier status though 58.3% preferred to delay the screening until just before marriage. The study concludes that there is a critical need to enhance awareness about the importance of early thalassemia screening. This can be achieved through targeted education and strategic interventions, aiming to promote early screening and ultimately prevent the birth of children with thalassemia major.
Downloads
Metrics
References
Angastiniotis, M., Petrou, M., Loukopoulos, D., Modell, B., Farmakis, D., Englezos, P., & Eleftheriou, A. (2021). The Prevention of Thalassemia Revisited: A Historical and Ethical Perspective by the Thalassemia International Federation. Hemoglobin, 45(1), 5–12. https://doi.org/10.1080/03630269.2021.1872612
Angela N Barrett Ramasamy Saminathan, M. C. (2017). Thalassaemia screening and confirmation of carriers in parents. Best Practice & Research Clinical Obstetrics & Gynaecology, 39, 27–49. https://www.sciencedirect.com/science/article/abs/pii/S1521693416301237?via%3Dihub
Basu, M. (2015). A Study on Knowledge, Attitude and Practice about Thalassemia among General Population in Out Patient Department at a Tertiary Care Hospital of Kolkata. Journal of Preventive Medicine and Holistic Health, 1(1), 5–12. https://www.researchgate.net/publication/282657666
Cheng, K., Fucharoen, S., Sanchaisuriya, K., Fucharoen, G., Sanchaisuriya, P., & Jetsrisuparb, A. (2018). Effect of health education on severe thalassemia prevention and control in communities in Cambodia. Archives of Public Health, 76(1), 1–8. https://doi.org/10.1186/s13690-018-0259-3
Dinh, T. T. H., & Bonner, A. (2023). Exploring the relationships between health literacy, social support, self-efficacy and self-management in adults with multiple chronic diseases. BMC Health Services Research, 23(1), 1–10. https://doi.org/10.1186/s12913-023-09907-5
Ghafoor, M. B., Iqbal, J., Muhammad, G., Shahbaz, M., Mustafa, G., & Saleem, M. (2020). Awareness Regarding Thalassemia in General Population of Rahim Yar Khan , Pakistan. International Journal of Medical Research & Health Sciences., 9(6), 79–84. www.ijmrhs.com
Hanifah, M. R. (2020). Description of Thalassemia Children at Regional General Hospital Dr. Soediran Mangun Sumarso Wonogiri. ASJN (Aisyiyah Surakarta Journal of Nursing), 1(1), 16–20. https://doi.org/10.30787/asjn.v1i1.64
Hastuti. (2016). Analysis Of Factors Related To The Level Of Anxiety Of Parents Of Children With Thalassemia At Ahmad Yani General Hospital, Metro. Kesehatan Metro Sai Wawai, 8(2), 49–54. https://ejurnal.poltekkestjk.ac.id/index.php/JKM/issue/view/20
Hoffmann, J. J. M. L., Urrechaga, E., & Aguirre, U. (2015). Discriminant Indices for Distinguishing Thalassemia and Iron Deficiency in Patients with Microcytic Anemia: A Meta-Analysis. Clinical Chemistry and Laboratory Medicine, 53(12), 1883–1894.https://doi.org/10.1515/cclm-2015-0179
Hossain et al. (2019). Lack of knowledge and misperceptions about thalassemia among college students in Bangladesh: A community-level cross-sectional study. 1–10.
Lantip Rujito, J. M. (2019). Adopting mass thalassemia prevention program in Indonesia. Indonesian Journal of Medicine and Health, 7(3), 109–114. https://journal.uii.ac.id/JKKI
Li, H., Wang, J., Wang, D., Gan, Y., & Xiong, Y. (2023). Ten Years’ Experience in Prenatal Diagnosis of α-thalassemia in a Municipal Hospital and Retrospective Analysis of Ultrasonic Abnormalities. International Journal of Hematology, 118(3), 355–363.
Listyaningsih. Aryani., & Herawati. (2023). The Influence of the Family Empowerment Program on Parents’ Knowledge about the Care of Thalassemia Children. Repositori Universitas Sahid Surakarta. http://repository.usahidsolo.ac.id/id/eprint/2552
Mat, M. A. C., Yaacob, L. H., & Zakaria, R. (2020). Parental knowledge on thalassaemia and factors associated with refusal to screen their children. Malaysian Journal of Medical Sciences, 27(1), 124–133. https://doi.org/10.21315/mjms2020.27.1.13
MERC Manual Professional Version. (2019). Pathophysiology of Thalassemias.https://www.merckmanuals.com/professional/hematology and-oncology/anemias-caused-by-hemolysis/thalassemias?
Ministry of Health. (2018). Prevent New Sufferers, Ministry of Health Formulates Thalassemia Screening Rules. https://p2ptm.kemkes.go.id/
Ministry of Health of the Republic of Indonesia. (2018). National Guidelines for Medical Services for Handling Thalassemia. http://hukor.kemkes.go.id/uploads/produk_hukum/KMK_No._HK_.01_.07-MENKES2018_
Ministry of Health of the Republic of Indonesia. (2022). Thalassemia Management Guidelines. https://p2ptm.kemkes.go.id/uploads/VHcrbkVobjRzUDN3UCs4eUJ0dVBndz09/2024/05/Fix_281222_15x21
Notoatmodjo Soekidjo. (2018). Health Promotion Theory and Application. Rineka Cipta. https://perpus.poltekkesjkt2.ac.id/index.php
Nurvinanda., S. H. K. R. (2023). Factors Associated with the Incident of Beta Thalassemia Major in Children. Journal of Professional Nursing Research, 5(November), 1713–1724.
P2PTM Ministry of Health. (2019). Break the Chain of Thalassemia, for a Healthier Indonesia. https://p2ptm.kemkes.go.id/
Patel, A. P., Parmar, P. H., Patel, R. B., Trivedi, N. M., Bhartiya, N. A., & Ashwin, P. P. (2016). Factors Influencing Beta-Thalassemia Awareness in West-ern India. National Journal of Community Medicine│Volume, 7(3), 193–197. www.njcmindia.org
Roth, I. L., Lachover, B., Koren, G., Levin, C., Zalman, L., & Koren, A. (2018). Detection of β-thalassemia carriers by red cell parameters obtained from automatic counters using mathematical formulas. Mediterranean Journal of Hematology and Infectious Diseases, 10(1), 1–10. https://doi.org/10.4084/MJHID.2018.008
Saeed, U. Z. Z. (2016). Thalassemia: Impact of consanguineous marriages on most prevalent monogenic disorders of humans. Asian Pacific Journal of Tropical Disease, 6(10). https://www.sciencedirect.com/science/article/abs/pii/S2222180816611428
Sari, N. M., Arini, I., Suryawan, N., Susanah, S., Reniarti, L., Achmad, H. R., & Idjradinata, P. (2020a). Evidence-Based Case Report: Screening Guidelines for Populations at High Risk for Thalassemia. Sari Pediatri, 21(5), 322. https://doi.org/10.14238/sp21.5.2020.322-8
Sari, N. M., Arini, I., Suryawan, N., Susanah, S., Reniarti, L., Achmad, H. R., & Idjradinata, P. (2020b). Evidence Based Case Report: Thalassemia Screening Guidelines for High Risk Population. Sari Pediatri, 21(5), 322. https://doi.org/10.14238/sp21.5.2020.322-8
Singh, R. K., Jha, N. K., Panigrahi, I., & Sinha, A. K. (2022). Awareness about thalassemia and its management among the caregivers of the thalassemia patients of Punjab and Chandigarh, India. International Journal of Health Sciences, 6(March), 258–271. https://doi.org/10.53730/ijhs.v6ns3.5182
Surjawan, Y., Tan, H. L., Setiabudy, R. D., & Rositawati, W. (2017). Early Screening of Hemoglobinopathy in Indonesia using Erythrocyte Indices. Indonesian Biomedical Journal, 9(2), 99–105. https://doi.org/10.18585/inabj.v9i2.313
Susanah, S., Sari, N. M., Prihatni, D., Sinaga, P., Trisaputra, J. O., Rakhmilla, L. E., & Sribudiani, Y. (2022). Extended family thalassemia screening as a feasible alternative method to be implemented in identifying carriers in West Java, Indonesia. Journal of Community Genetics, 13(1), 103–112. https://doi.org/10.1007/s12687-021-00565-w
Tuo, Y., Li, Y., Li, Y., Ma, J., Yang, X., Wu, S., Jin, J., & He, Z. (2024). Global, regional, and national burden of thalassemia, 1990–2021: a systematic analysis for the global burden of disease study 2021. EClinicalMedicine, 72, 102619. https://doi.org/10.1016/j.eclinm.2024.102619
Utami, S. T., & Kusumaningrum, N. S. D. (2020). Knowledge of Premarital Couples Regarding Premarital Screening Thalassemia. Jurnal Keperawatan, 11(2), 180–187. https://doi.org/10.22219/jk.v11i2.10740
Wildani, M. M., Triatmono, V. R., Yo, E. C., Mikhael, Yosia, & Wahidiyat, P. A. (2021). Study protocol for a cross-sectional study on knowledge, attitude, and practice towards thalassemia among Indonesian youth
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.
