MOTHERS' EXPERIENCES REGARDING THEIR CHILDREN WITH THALASSEMIA MAJOR IN MULTAN, PAKISTAN
Keywords:
Lived Experiences, Mothers, Thalassemia, Major Children, PsychologicalAbstract
Thalassemia is a genetic blood disease which passes from parents to their kids. It is a main health disorder in Pakistan and South Asian nations. About 6-8 % of residents of Pakistan are thalassemia carrier’s traits. The patients of this disease need medicines and ordered blood transfusions throughout their whole lives, but that process strongly impacts the patients and their families, mainly the mothers of the patients disturbed a lot. The main objectives of this research were to explore the issues of mothers having thalassemia major children and to dig out the effects of Thalassemia major on the mothers of the patients. This qualitative study explored the lived experiences of 20 mothers of children with thalassemia major by conducting semi-structured interviews. The present study was conducted at the Thalassemia Centre of the Children’s Hospital & the Institute of Child Health Multan, Pakistan, and data were analysed by using content analysis. Ethical approval was obtained from the ethics committee of the Hospital for the data collection process. It was found that thalassemia major disturbs the well-being of the mother’s life, and very few mothers had adequate knowledge about genetic disorders. The majority of the mothers were strained due to their children's sickness and regular transfusions of blood. They were afraid about their child’s current status and their upcoming. They were anxious about the child's presence, learning and hitches. The majority of the mothers identified the effects of illness on their children’s school presence. The study suggested that healthcare experts, including social workers, should teach and apprise the mothers obviously about the thalassemia disease, its management, and deterrence. Civic support agendas must be established officially to support thalassemia patients and their caregivers, especially their mothers.
References
Abedi, H., Abbaszadeh, A., Kazemi, M., & Pouraboli, B. (2020). Silent screams: experiences of caregiver suffering by parents of children with thalassemia: a qualitative study. Journal of Qualitative Research in Health Sciences, 3(3), 281-291.
Anie, K. A., & Massaglia, P. (2001). Psychological therapies for thalassaemia. Cochrane Database System Review, 3, CD002890. Aydin, B., Yaprak, I., Akarsu, D., Okten, N., & Ulgen, M. (1997).
Atiye Karakul, R. N., Oymak, Y., & Karapinar, T. H. (2022). The Experiences of Parents of Children with Thalassemia Major in Turkey: A Qualitative Study. International Journal of Caring Sciences, 15(1), 424-434.
Cazzola, M., Borgan-Pignatti, C., Locatelli, F., Ponchio, L., Beguin, Y., & De Stefano, P. (1997). A moderate transfusion regimen may reduce iron loading in β-thalassemia major without producing excessive expansion of erythropoiesis. Transfusion, 37, 135–140.
Denzin, N. K., & Lincoln, Y. (Eds.). (1994). Handbook of qualitative research, London: Sage.
Dessi, C., et al. (1995). Relationship between transfusion regimen and suppression of erythropoiesis in beta-thalassemia major. British Journal of Haematology, 89, 473–478.
Dhamcharee, V., Romynan, O., & Ninlagarn, T. (2001). Genetic counselling for thalassemia in Thailand: Problems and solutions. Southeast Asian Journal of Tropical Medicine & Public Health, 32(2), 413 – 418.
families. Acta Haematologica, 107, 150–157. Cazzola, M., De Stefano, P., Ponchio, L., Locatelli, F., Beguin, Y.,
Fucharoen, S., Winichagoon, P., Thong, V., Siriboon, W., Siritanarakul, N., & Kanokpongsaki, S. (1991). Prenatal diagnosis of thalassemia and hemoglobinopathies in Thailand: Experiments from 100 pregnancies. Southeast Asian Journal of Tropical Medicine & Public Health, 22(1), 16–29.
Goldbeck, L., Baving, A., & Kohne, E. (2000). Psychosocial aspects of beta-thalassemia: Distress, coping and adherence. Klinische Padi- atrie, 212(5), 254–259.
Heidari, H., & Ahmadi, A. (2020). Explaining consequences of parents having child with thalassemia: Qualitative study. Medical-Surgical Nursing Journal, 9(2).
Hussain, M. M., Zulfiqar, Z., Ishfaq, K., & Ghaffari, A. S. (2021). Psycho-Social and Economic Problems Faced by Parent’s of Children with Epilepsy. Review of Education, Administration & Law, 4(2), 521-530.
Karim, M. F., Ismail, M., Hasan, A. M., & Shekhar, H. U. (2016). Hematological and biochemical status of Beta-thalassemia major patients in Bangladesh: A comparative analysis. International journal of hematology-oncology and stem cell research, 10(1), 7.
Louthrenoo, O., Sittipreechacharn, S., Thanarattanakorn, P., & Sanguansermsri, T. (2000). Psychosocial problems in children with thalassemia and their siblings. Journal of the Medical Association of Thailand, 85(8), 881–885.
Mashayekhi, F., Jozdani, R. H., Chamak, M. N., & Mehni, S. (2016). Caregiver burden and social support in mothers with β-thalassemia children. Global Journal of Health Science, 8(12), 206.
Nicosia, Cyprus: Thalassemia International Federation. Caro, J. J., Ward, A., Green, T. C., Huybrechts, K., Arana, A., Wait, S., et al. (2002). Impact of thalassemia major on patients and their
Panich, V., Pornpatkul, M., & Sriroongrueng, W. (1992). The problem of thalassemia in Thailand. Southeast Asian Journal of Tropical Medicine and Public Health, 23(Suppl. 1), 1–6.
Podhisita, C. (1998). Buddhism and Thai world view. In A. Pong- sapich (Ed.), Traditional and changing Thai world view (pp. 31–62). Bangkok, Thailand: Chulalongkorn Printing House.
Politis, C. (1998). The psychosocial impact of chronic illness. Annals of the New York Academy of Sciences, 850, 349–354.
Prasomsuk, S., Jetsrisuparp, A., Ratanasiri, T., & Ratanasiri, A. (2006). Health promotion model for enhancing quality of life among families with thalassemic children. Unpublished doctoral dissertation, Khon Kaen University, Thailand.
Psychosocial aspects and psychiatric disorders in children with thalassemia major. Acta Paediatrica Japonica, 39(3), 354–357. Cappellini, N., Cohen, A., Eleftherion, A., Piga, A., & Porter, J. (Eds.). (2000). Guidelines for the clinical management of thalassemia.
Punaglom, N., Kongvattananon, P., & Somprasert, C. (2019). Experience of parents caring for their children with Thalassemia: Challenges and issues for integrative review. The Bangkok Medical Journal, 15(1), 100-100.
Ratip, S., & Modell, B. (1996). Psychological and sociological aspects of thalassaemia. Seminars in Haematology, 33, 53–65.
Ritchie, J., & Lewis, J. (2003). Qualitative research practice: A guide for social science students and researchers. London: Sage.
Sapountzi-Krepia, D., Roupa, Z., Gourni, M., Mastorakou, F., Vojiatzi, E., Kouyioumtzi, A., & Van Shell, S. (2006). A qualitative study on the experiences of mothers caring for their children with thalassemia in Athens, Greece. Journal of Pediatric Nursing, 21(2), 142-152.
Siddiqui, S. H., Ishtiaq, R., Sajid, F., & Sajid, R. (2014). Quality of life in patients with thalassemia major in a developing country. JCPSP: Journal of the College of Physicians and Surgeons--Pakistan, 24(7), 477.
Suryani, R. L. (2020, February). Supportive Care Needs: External Support for Parents of Children with Thalassemia. In 1st International Conference on Community Health (ICCH 2019) (pp. 174-177). Atlantis Press.
Zulfiqar, Z., Safian, A., Imran, M., Ghaffari, A. S., & Bhuttah, T. M. (2021). Socio-Psychological Problems Faced by Female Victims of Acid Burn in Southern Punjab, Pakistan. PalArch's Journal of Archaeology of Egypt/Egyptology, 18(2), 819-831.
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