A Phenomenological Study of Psychosocial and Educational Challenges of Parents having Children with Thalassemia
Keywords:
Thalassemia, Caregivers, Psychosocial problems, educational challenges, cooping strategiesAbstract
Thalassemia is a major public health problem and the most common hereditary disease in the world. Having no permanent cure, Thalassemia is reported to create stress for the patient's families. Especially the caregivers of thalassemia children face many socio-psychological, educational, and financial challenges related to the illness of their children. Therefore, the present study was aimed to explore the parents’ experiences of thalassemia patients, particularly their educational challenges. A phenomenological research design was adopted to investigate the research questions. Through purposive sampling technique, the sample of 10 caregivers of thalassemia patients from Safe Life Thalassemia Centre Sargodha were selected. The interview guide was used to collect the data. Through thematic analysis, five major themes were generated including, Economic constraints, psychological concerns, social apprehension, impact on daily family life, and child's educational experiences. The results of the present study indicated that caregivers especially mothers of patients face multiple challenges including socio-economic problems, psychological worries, and issues of overall integration in their respective communities. This study concluded that children due to their illness, face difficulties in school and remain absent for longer period of time and consequently they suffer psychologically which further increase the severity of their illness. Moreover, due to this disease, day to day family life of patients affect too, leaving them more vulnerable to cope with the challenges. This situation demands institutional support and mechanism for thalassemia patients to continue their education and special trainings of coping strategies for the caregivers.
References
Abu Shosha, G., & Al Kalaldeh, M. (2018). Challenges of having a child with thalassaemia major: A phenomenological study. Journal of Research in Nursing, 23(1), 9-20. https://doi.org/https://doi.org/10.1177/1744987117724497
Afzal, E., Sheikh, M. A., Bhaba, S. H., Ahmed, T., Iqbal, I., & Iqbal, M. K. (2023). Psychosocial Illness In Children With Thalassemia: A Case-Control Study. Journal of Rawalpindi Medical College, 27(1), 24-29. https://doi.org/https://doi.org/10.37939/jrmc.v27i1.1825
Ali, S., Mumtaz, S., Shakir, H. A., Khan, M., Tahir, H. M., Mumtaz, S., Mughal, T. A., Hassan, A., Kazmi, S. A. R., & Sadia. (2021). Current status of beta‐thalassemia and its treatment strategies. Molecular Genetics & Genomic Medicine, 9(12), 1-14. https://doi.org/https://doi.org/10.1002/mgg3.1788
Ali, S., Sabih, F., Jehan, S., Anwar, M., & Javed, S. (2012). Psychological distress and coping strategies among parents of beta-thalassemia major patients. International Conference on Clean and Green Energy vol 27, 124-128.
Aziz, K., Sadaf, B., & Kanwal, S. (2012). Psychosocial problems of Pakistani parents of Thalassemic children: a cross sectional study done in Bahawalpur, Pakistan. BioPsychoSocial medicine, 6, 1-7. https://doi.org/https://doi.org/10.1002/mgg3.1788
Behdani, F., Badiee, Z., Hebrani, P., Moharreri, F., Badiee, A. H., Hajivosugh, N., Rostami, Z., & Akhavanrezayat, A. (2015). Psychological aspects in children and adolescents with major thalassemia: A case-control study. Iranian journal of pediatrics, 25(3), 1-8. https://doi.org/10.5812/ijp.25(3)2015.322
Clinic, M. (2021). https://www.mayoclinic.org/diseases-conditions/thalassemia/symptoms-causes/syc-20354995
Heidari, H., & Ahmadi, A. (2020). Explaining consequences of parents having child with thalassemia: Qualitative study. Medical-Surgical Nursing Journal, 9(2), 1-5. https://doi.org/https://doi.org/10.5812/msnj.106312
Hussain, M., Ahmad, K., Lak, T. A., Alvi, A. S., & Mohsin, R. (2021). An Analysis of Experiences and Problems of Parents with Thalassemia Children. PSYCHOLOGY AND EDUCATION, 58(2), 10674-10680. https://doi.org/https://doi.org/10.17762/pae.v58i2.4044
Inamdar, S., Inamdar, M., & Gangrade, A. (2015). Stress level among caregivers of thalassemia patients. National Journal of Community Medicine, 6(04), 579-582. https://doi.org/https://njcmindia.com/index.php/file/article/view/1283
Khaliq, S. (2022). Thalassemia in Pakistan. Hemoglobin, 46(1), 12-14. https://doi.org/https://doi.org/10.1080/03630269.2022.2059670
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, 1-7. https://doi.org/https://doi.org/10.4103%2Fjehp.jehp_163_21
Ogli, A. I. F. (2020). Defining learning disorders and learning disabled children (Children who have problems learning). Наука и образование сегодня 3 (50), 71-73.
Pakbaz, Z., Treadwell, M., Kim, H. Y., Trachtenberg, F., Parmar, N., Kwiatkowski, J. L., Cunningham, M. J., Martin, M., Sweeters, N., & Neufeld, E. J. (2010). Education and employment status of children and adults with thalassemia in North America. Pediatric blood & cancer, 55(4), 678-683. https://doi.org/https://doi.org/10.1002%2Fpbc.22565
Reddy, P. S., Locke, M., & Badawy, S. M. (2022). A systematic review of adherence to iron chelation therapy among children and adolescents with thalassemia. Annals of Medicine, 54(1), 326-342. https://doi.org/https://doi.org/10.1080/07853890.2022.2028894
Saleem, N., Anwar, A., Shahid, N. U. A., Saleem, R., Saleem, Z., Asghar, H., Zubair, M., Ellahi, H., & Iqbal, S. (2021). Perception of Parents of Thalassemic Child to Thalassemia in Pakistan. Cureus, 13(8), 2-5. https://doi.org/10.7759/cureus.17615
Shafi, N., Ahmed, S., & Siddique, A. R. (2021). The psychosocial and financial ramifications of thalassemia on parents of thalassemic children presented at tertiary care hospitals. Open Journal of Pediatrics, 11(3), 379-387. https://doi.org/https://doi.org/10.4236/ojped.2021.113034
Sohail, S., Fatima, K., & Riaz, N. (2020). Knowledge, attitude and practice of final year medical students regarding thalassemia major. Rawal Medical Journal, 45(2), 461-461.
Wahab, I. A., Naznin, M., Nora, M., Suzanah, A. R., Zulaiho, M., Faszrul, A. R. A., & Kamaruzaman, W. (2011). Thalassaemia: a study on the perception of patients and family members. The Medical journal of Malaysia, 66 4, 326-334.
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. Cureus, 14(12), 2-8. https://doi.org/https://doi.org/10.7759%2Fcureus.32491
Zaheer, H. A., Waheed, U., Abdella, Y. E., & Konings, F. (2020). Thalassemia in Pakistan: A forward-looking solution to a serious health issue. Glob J Transfus Med, 5(1), 108-110. https://doi.org/http://dx.doi.org/10.4103/GJTM.GJTM_72_19
Downloads
Published
How to Cite
Issue
Section
Categories
License
Copyright (c) 2023 Nargis Abbas, Tahira Gilani, Rashna Asif
This work is licensed under a Creative Commons Attribution 4.0 International License.
Archives of Educational Studies (ARES), published by Department of Educational Studies, University of Okara, Pakistan is licensed under a Creative Commons Attribution 4.0 International License.
To view a copy of this license, visit: https://creativecommons.org/licenses/by/4.0/
