Perceived Physical, Emotional and Monetary Burden among Caregivers of Thalassemia Patients: An Evidence-based Study from District Gujrat, Pakistan
DOI:
https://doi.org/10.55737/qjss.377349408Keywords:
Thalassemia, Genetic Blood Disorder, Caregivers, Physical Burden, Emotional Burden, Monitory BurdenAbstract
Thalassemia is among the most challenging hereditary blood disorders with no permanent cure. The patients of thalassemia have to face multidimensional complications that may lead to physical, emotional, social, and monetary burdens, among others, that negatively affect the patients, their families, and especially the caregivers. The caregivers feel the burden owing to the long-standing character of the diseases and the struggling process for curing patients, and the caregivers have to face numerous burdens that lead them towards anxiety, depression, social withdrawal, aggression, poor relationships, lower productivity, and many others. The prime objective of this study is to understand the physical, emotional, and monetary burdens faced by caregivers, and primary data for this quantitative study were collected from caregivers of thalassemia patients of district Gujrat. Researchers applied the purposive sampling technique and a structured questionnaire to approach the study participants. The findings highlighted that the caregivers of thalassemia patients face a large number of physical (continued attachment, tiredness, isolation, lower productivity), emotional (aggression, depression, fear of losing a loved one life), and monetary (visiting health centers, arranging blood donors, travel and transportation, personal obligations) burdens that have significant impacts on their socio-economic, psychological and physical health.
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Ahmadi, M., Gheibizadeh, M., Rassouli, M., Ebadi, A., Asadizaker, M., & Jahanifar, M. (2020). Experience of uncertainty in patients with thalassemia major: A qualitative study. International Journal of Hematology-Oncology and Stem Cell Research. https://doi.org/10.18502/ijhoscr.v14i4.4479
Ahmadian, B., Ramezani, M., Badiee, Z., & Vaghee, S. (2022). Coping Strategies in Patients with Beta-thalassemia and their Parents: A Systematic Review. International Journal of Pediatrics, 10(3), 15682-15694. https://doi.org/10.22038/ijp.2022.62544.4782
Alizadeh, M., Chehrzad, M. M., Mirzaee, M., & Leyli, E. K. N. (2019). Caregiver burden and related factors in parents of children. Journal of Advanced Pharmacy Education & Research, 9(2), 29-39.
Anwar, H., Zafar, Z., Jahangir, J., Khalid, H., Wajid, A., & Khan, S. (2022). Prevalence of psychological distress among mothers of β-thalassemia children in a developing country. Pakistan Journal of Health Sciences, 79-82. https://doi.org/10.54393/pjhs.v3i07.405
Askaryzadeh Mahani, M., Ghasemi, M., Arab, M., Baniasadi, Z., Omidi, A., & Irani, P. S. (2023). The correlation between caregiver burden with depression and quality of life among informal caregivers of hemodialysis and thalassemia patients during the COVID-19 pandemic: A cross-sectional study. BMC Nursing, 22(1). https://doi.org/10.1186/s12912-023-01351-4
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. https://www.internationaljournalofcaringsciences.org/docs/43.pp_424_434-karacul.pdf
Aziz, S. V., Firouzkouhi, M., & Ghalgaie, J. (2017). Lived experiences of Iranian parents of beta-thalassemia children. Journal of Multidisciplinary Healthcare, Volume 10, 243–251. https://doi.org/10.2147/jmdh.s132848
Biswas, D., & Lo, S. S. (2022). Coping styles in parents of children with thalassemia in West Bengal. Indian Journal of Social Psychiatry, 38(2), 131. https://doi.org/10.4103/ijsp.ijsp_243_20
Dadipoor, S., Haghighi, H., Madani, A., Ghanbarnejad, A., Shojaei, F., Hesam, A., & Safari-Moradabadi, A. (2015). Investigating the mental health and coping strategies of parents with major thalassemic children in Bandar Abbas. Journal of Education and Health Promotion, 4(1), 59. https://doi.org/10.4103/2277-9531.162375
Hossain, M. S., Hasan, M. M., Petrou, M., Telfer, P., & Mosabbir, A. A. (2021). The parental perspective of thalassemia in Bangladesh: lack of knowledge, regret, and barriers. Orphanet Journal of Rare Diseases, 16(1). https://doi.org/10.1186/s13023-021-01947-6
Ibrahim, E. S., Nagar, M. A. A., Eita, L. H., & Alam, F. H. (2021). Relationship between Quality of Life and Social Support among mothers of children with Thalaseemia. International Journal of Novel Research in Healthcare and Nursing, 8(2), 75-87.
Khan, F., Khan, M., Ayubi, T. and Shah, H. (2007). Frequency of complications in Beta thalassemia major in D.I. Khan. Biomedical, 23, 31-33.
Koutelekos, J., & Haliasos, N. (2013). Depression and Thalassemia in children, adolescents, and adults. Health Science Journal, 7(3), 239-247. https://www.itmedicalteam.pl/articles/depression-and-thalassemia-in-children-adolescents-and-adults.pdf
Nabavian, M., Cheraghi, F., Shamsaei, F., Tapak, L., & Tamaddoni, A. (2022). The psychosocial challenges of mothers of children with thalassemia: A qualitative study. Journal of Education and Health Promotion, 11(1), 37. https://doi.org/10.4103/jehp.jehp_163_21
Nargis Abbas, T. G. (2023). A Phenomenological Study of Psychosocial and Educational Challenges of Parents Having Children with Thalassemia. Archives of Educational Studies (ARES), 3(1), 97–111. Retrieved from https://ares.pk/ojs/index.php/ares/article/view/68
Noyes, J. (1999). The impact of knowing your child is critically ill: A qualitative study of mothers' experiences. Journal of Advanced Nursing, 29(2), 427-435. https://doi.org/10.1046/j.1365-2648.1999.00906.x
Saqlain, S. A. (2022). Psychosocial Problems Faced by Thalassemia Patients and their Parents. Journal of Society of Prevention, Advocacy and Research KEMU, 1(3), 1-10. https://journalofspark.com/journal/index.php/JSpark/article/view/105 .
Subardhini, M., Rinda A, R. H., & Herlina, E. (2019). Coping strategy enhancement for families who have children with thalassemia through family counseling at Sukabumi thalassemia Foundation. Asian Social Work Journal, 4(2), 78-90. https://doi.org/10.47405/aswj.v4i2.93
Tarım, H. Ş., & Öz, F. (2022). Thalassemia major and associated psychosocial problems: A narrative review. Iranian Journal of Public Health. https://doi.org/10.18502/ijph.v51i1.8287
Tsiantis, J., Dragonas, T., Richardson, C., Anastasopoulos, D., Masera, G., & Spinetta, J. (1996). Psychosocial problems and adjustment of children with ?-thalassemia and their families. European Child & Adolescent Psychiatry, 5(4), 193-203. https://doi.org/10.1007/bf00538846
Yousuf, R., Akter, S., Wasek, S. M., Sinha, S., Ahmad, R., & Haque, M. (2022). Thalassemia: A review of the challenges to the families and caregivers. Curēus. https://doi.org/10.7759/cureus.32491
Zakiyah, I., Mediani, H. S., & Mardiah, W. (2018). Literature review: Stress and mother life quality with thalassemia children major ages 0–18 years. Journal of Nursing Care, 1(3). https://doi.org/10.24198/jnc.v1i3.18524
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