Caregivers burnout of their children with thalassemia
Keywords:
caregiver, burnout, children, thalassemiaAbstract
Background: Thalassemia has a negative influence on emotional and social life of caregivers as it is associated with significant social disruption, emotional or psychological stress and highly involved with children's psychological problems. Aim: The study aimed to assess caregivers` burnout of their children with thalassemia. Design: Descriptive research design was applied in this study. Sample: Purposive sample was equal 116 caregivers. Setting: The outpatient clinics at Mustafa Hassan university hospital for pediatric (Al-fayoum, Egypt). Tools: Two tools were used, first tool: includes structure interviewing questionnaire of demographic characteristics of caregivers and their children, past and present medical history and caregivers` knowledge regarding thalassemia. Second tool: caregivers` burnout tool for thalassemia Result: The study showed that, 60% of studied caregivers had unsatisfactory knowledge regarding thalassemia while, 40% of them had satisfactory knowledge regarding thalassemia. 70% of studied caregivers had high burnout while, 30% of them had low burnout regarding thalassemia. Conclusion: there were significant positive correlation between studied caregivers’ total knowledge scores and total burnout scores of their children with thalassemia. Recommendation: implementation of health education program for caregivers for management of thalassemia at out-patient clinics.
Downloads
References
Zhu, Y., Shen, N., Wang, X., Xiao, J., & Lu, Y. ,(2020): Alpha and beta-Thalassemia mutations in Hubei area of China. BMC medical genetics, 21(1), 1-5.
Zhao, P., Wu, H., Zhong, Z., Lan, L., Zeng, M., Lin, H., ... & Guo, W. ,(2018): Molecular prenatal diagnosis of alpha and beta thalassemia in pregnant Hakka women in southern China. Journal of clinical laboratory analysis, 32(3), e22306.
Tsartsalis, A. N., Lambrou, G. I., Tsartsalis, D., Savvidis, C., Karantza, M., Terpos, E., & Kattamis, A. ,(2018): The role of biphosphonates in the management of thalassemia-induced osteoporosis: a systematic review and meta-analysis. Hormones, 17(2), 153-166.
Olatunya, O. S., Albuquerque, D. M., Adekile, A., & Costa, F. F. ,(2019): Influence of alpha thalassemia on clinical and laboratory parameters among nigerian children with sickle cell anemia. Journal of clinical laboratory analysis, 33(2), e22656.
Thompson, A. A., Walters, M. C., Kwiatkowski, J., Rasko, J. E., Ribeil, J. A., Hongeng, S., & Cavazzana, M. ,(2018): Gene therapy in patients with transfusion-dependent β-thalassemia. New England Journal of Medicine, 378(16), 1479-1493.
John, M. J., Jyani, G., Jindal, A., Mashon, R. S., Mathew, A., Kakkar, S., & Prinja, S. ,(2018): Cost effectiveness of hematopoietic stem cell transplantation compared with transfusion chelation for treatment of thalassemia major. Biology of Blood and Marrow Transplantation, 24(10), 2119-2126.
Shah, F. T., Sayani, F., Trompeter, S., Drasar, E., & Piga, A. ,(2019): Challenges of blood transfusions in β-thalassemia. Blood reviews, 37, 100588. https://doi.org/10.1016/j.blre.2019.100588.
Gérain, P., & Zech, E. ,(2019): Informal caregiver burnout? Development of a theoretical framework to understand the impact of caregiving. Frontiers in psychology, 10, 1748. https://doi.org/10.3389/fpsyg.2019.01748
Heidari, H., & Ahmadi, A., (2019): Change in the Health System Structure is a Way to Support Parents Having Children with Thalassemia: A Qualitative Study. Children, 8(6), 3.
Elsoudy, S. F., Madinay, N., & Yonis Mahrous, E. S. ,(2022): Compliance of Children with Thalassemia to Their Therapeutic Regimen. International Egyptian Journal of Nursing Sciences and Research, 2(2), 168-182
El-Shanshory, M. R., Sherief, L. M., Hassab, H. M., Ragab, S. M., Yahia, S., Mansour, A. K., & Saied, S. M. ,(2021): Prevalence of iron deficiency anemia and beta thalassemia carriers among relatives of beta thalassemia patients in Nile Delta region, Egypt: a multicenter study. Journal of the Egyptian Public Health Association, 96(1), 1-8.
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.
Maslach, C., & Jackson, S. E. ,(1981): The measurement of experienced burnout. Journal of organizational behavior, 2(2), 99-113.
Alizadeh, M., Chehrzad, M. M., Mirzaee, M., & Leyli, E. K. N. ,(2019): Caregiver burden and related factors in parents of children with Thalassemia. Journal of Advanced Pharmacy Education & Research| Apr-Jun, 9(S2).
Ibrahim, E. S., Al Nagar, M. A., Eita, L. H., & Alam, F. H.,(2021): Relationship between Quality of Life and Social Support among Mothers of Children with Thalassemia. Ibrahim, E. S., Al Nagar, M. A., Eita, L. H., & Alam, F. H. Relationship between Quality of Life and Social Support among Mothers of Children with Thalassemia,8, (2), 75-87
Man, C. D., Maideen, S. F. K., & Rashid, A. ,(2019): Knowledge, attitude and practice towards dietary iron among patients with thalassemia and their caregivers in Peninsular Malaysia. Med. J. Malays, 74, 365-371.
Biswas, B., Naskar, N. N., Basu, K., Dasgupta, A., Basu, R., & Paul, B. ,(2020): Care-related quality of life of caregivers of beta-thalassemia major children: An epidemiological study in eastern India. Journal of Epidemiology and Global Health, 10(2), 168.
Khresheh, S. M., & Brair, S. L. ,(2020): Knowledge and practices among Mothers about Care of their children with Beta Thalassemia Major: A descriptive Study. Egyptian Journal of Health Care, 11(3), 1-12.
Mohiuddin, Z., Haque, M. M., & Ahmad, S. A. ,(2019):Parenting Stress of Mothers Having Children with Thalassemia. Journal of Preventive and Social Medicine, 38(2), 22-29.
Hisam, A. ,(2018): Perceived stress and monetary burden among thalassemia patients and their caregivers. Pakistan journal of medical sciences, 34(4), 901.
Ahmed, N., Khan, B. A., Bukhari, S. W., Khan, K. S., Sabir, T., & Nazir, M. B. ,(2020): Knowledge, attitude and practices (KAP) of The families of B-thalassemia patients in a thalassemia Center of Karachi. Int J Curr Med Pharm Res, 6, 4972-6.
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.
Khalid, N., Noreen, K., Qureshi, F. M., & Mahesar, M. ,(2019): Knowledge of thalassemia and consanguinity: A multicenter hospital based retrospective cohort study from metropolitan city of Karachi, Pakistan. The Professional Medical Journal, 26(09), 1580-1586
Prajapati, N. K., Samani, M. J., & Jani, A. M. ,(2021): Caregiver burden and psychiatric morbidity among caregivers of children with thalassemia major: A cross-sectional study. Annals of Indian Psychiatry, 5(1), 43
Manzoor, I., & Zakar, R. ,(2019): Sociodemographic determinants associated with parental knowledge of screening services for thalassemia major in Lahore. Pakistan journal of medical sciences, 35(2), 483.
Williams, S., Saraswathi, K. N., & Lissa, J. ,(2017): A study was to assess the knowledge of caregivers regarding thalassemia in selected hospital at mysore with a view to develop information booklet. International Journal of Nursing Education and Research, 5(2), 195-197.
Abbasi, S. U. R. S., & Manzoor, M. M. ,(2020): Socio-religious prognosticators of psychosocial burden of beta thalassemia major. Journal of religion and health, 59(6), 2866-2881.
Sofija, G., & Ivan, T. (2018). Quality of life in children with disabilities placed in foster families. International Journal of Health & Medical Sciences, 1(1), 18-27. https://doi.org/10.31295/ijhms.v1n1.35
Widana, I.K., Dewi, G.A.O.C., Suryasa, W. (2020). Ergonomics approach to improve student concentration on learning process of professional ethics. Journal of Advanced Research in Dynamical and Control Systems, 12(7), 429-445.
Published
How to Cite
Issue
Section
Copyright (c) 2022 International journal of health sciences
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Articles published in the International Journal of Health Sciences (IJHS) are available under Creative Commons Attribution Non-Commercial No Derivatives Licence (CC BY-NC-ND 4.0). Authors retain copyright in their work and grant IJHS right of first publication under CC BY-NC-ND 4.0. Users have the right to read, download, copy, distribute, print, search, or link to the full texts of articles in this journal, and to use them for any other lawful purpose.
Articles published in IJHS can be copied, communicated and shared in their published form for non-commercial purposes provided full attribution is given to the author and the journal. Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgment of its initial publication in this journal.
This copyright notice applies to articles published in IJHS volumes 4 onwards. Please read about the copyright notices for previous volumes under Journal History.
