Studies Qualitative Thalassemia Selfcare Management Teenagers
Abstract
Study This to study self-care management in adolescents sufferer thalassemia major in the Province West Java, with objective For understand How teenager the manage condition his health is good in a way physique and also psychological. Method research used is approach qualitative with design phenomenology, which relies on interview deep against 29 participants aged between 10 and 18 years old. The results of the study show that condition physical, complaints physical, results laboratory, and conditions genetics become factor key in the early diagnosis of thalassemia. Support social from family and friends peers also play a role important in increase quality life teenager sufferer thalassemia. Findings This support importance approach holistic in management disease, which includes maintenance medical, education, and support psychosocial For increase ability teenager in manage condition they in a way independent. Programs such as Self-care Management of Adolescent Thalassemia expected can give contribution significant to strengthening self-care among teenager sufferer thalassemia in West Java.
References
Atia, M., Eita, L., Alhalawany , R., Ghoneim, A., & Badawy, S. (2021). The effectiveness of positive psychotherapy on the self-efficacy and psychological well-being of children with thalassemia. Egyptian Journal of Health Care, 12(3), 797-812. https://doi.org/10.21608/ejhc.2021.191831
Azize, P., Tahir, F., & Kelsey, J. (2015). Nurses' knowledge and role in the management of thalassemic patients in Sulaimania thalassemia center . Iraqi National Journal of Nursing Specialties, 28(2), 59-70. https://doi.org/10.58897/injns.v28i2.230
Babaei, M., Askarizadeh , G., & Towhidi , A. (2019). The effectiveness of stress management and resilience training (smart) on psychological well-being in patients with thalassemia major. Preventive Care in Nursing and Midwifery Journal, 8(4), 8-15. https://doi.org/10.29252/pcnm.8.4.8
Badawy, S. F., Okby, O. M., Omar, T. K., & Ahmed, F. A. (2023). Effect of Self-Determination Theory Based Intervention on Self-Care Among School Age Children with Thalassemia. Menoufia Nursing Journal, 8(1), 307-332.
Bendowska, A., & Baum, E. (2023). The significance of cooperation in interdisciplinary health care teams as perceived by polish medical students. International journal of environmental research and public health, 20(2), 954. https://doi.org/10.3390/ijerph20020954
Brandt, M., Johannsen, L., Inhestern, L., & Bergelt, C. (2022). Parents as informal caregivers of children and adolescents with spinal muscular atrophy: a systematic review of quantitative and qualitative data on the psychosocial situation, caregiver burden, and family needs. Orphanet journal of rare diseases, 17(1), 274. https://doi.org/10.1186/s13023-022-02407-5
Halim-Fikri, B. H., Lederer, C. W., Baig, A. A., Mat-Ghani, S. N. A., Syed-Hassan, S. N. R. K., Yusof, W., ... & Global Globin Network (GGN). (2022). Global globin network consensus paper: classification and stratified roadmaps for improved thalassaemia care and prevention in 32 countries. Journal of Personalized Medicine, 12(4), 552. https://doi.org/10.3390/jpm12040552
Hassani, L., Seyrafi , N., Mohammadi, S., Aghamolaei , T., Ghanbarnejad , A., & Evazi , M. (2024). Effectiveness of educational intervention on quality of life in adults with thalassemia major: a quasi‐experimental study based on a precedent model. Health Science Reports, 7(9). https://doi.org/10.1002/hsr2.70075
Hemmatipour , A., Rokhafrooz , D., Ghahfarokhi , S., & Mirmoghtadaie , Z. (2023). Effect of family- centered empowerment model using mobile learning on the quality of life in children with thalassemia: a quasi-experimental study. Jundishapur Journal of Chronic Disease Care, 13(1). https://doi.org/10.5812/jjcdc-138139
Jabeen, R., Ansari, I., Durrani, B., Salman, M. J., Mazhar, L., Ansari, M. U. H., ... & Ansari, S. H. (2024). Exploring the perceptions and experiences of female’s with ß-thalassemia major in a Tertiary Care Private Hospital in Pakistan. Transfusion Clinique et Biologique, 31(4), 244-252. https://doi.org/10.1016/j.tracli.2024.06.008
Janatri, S., Kuan, C. S., & Harun, Z. (2024). Mobile and Web-Based Apps to Support Self-Care in Adolescents with Thalassemia: A Systematic Review. International Journal of Biotechnology and Biomedicine (IJBB), 1(2), 10-23. https://doi.org/10.31674/ijbb.2024.v01i02.002
Kharyal , R., Kumari, V., Mrunalini, V., Naik, M., Joshi, P., & Seth, T. (2020). Disease knowledge and general self-efficacy among adolescents with thalassemia major and their parents' perspective. Indian Journal of Hematology and Blood Transfusion, 37(2), 280-286. https://doi.org/10.1007/s12288-020-01335-3
Kharyal , R., Kumari, V., Mrunalini, V., Naik, M., Joshi, P., & Seth, T. (2020). Disease knowledge and general self-efficacy among adolescents with thalassemia major and their parents' perspective. Indian Journal of Hematology and Blood Transfusion, 37(2), 280-286. https://doi.org/10.1007/s12288-020-01335-3
Khoury, B., Musallam, K., Abi-Habib, R., Bazzi, L., Ward, Z., Succar, J., … & Taher, A. (2012). Prevalence of depression and anxiety in adult patients with β-thalassemia major and intermedia. The International Journal of Psychiatry in Medicine, 44(4), 291-303. https://doi.org/10.2190/pm.44.4.a
Li, S., Xiang, Y., Li, H., Yang, C., He, W., Wu, J., ... & Ye, Z. (2024). Body image, self-efficacy, and sleep quality among patients with breast cancer: a latent profile and mediation analysis. European Journal of Oncology Nursing, 71, 102652. https://doi.org/10.1016/j.ejon.2024.102652
M Atia, M., Hassnin Eita, L., M Alhalawany, R., A Ghoneim, A., & A Badawy, S. (2021). The Effectiveness of Positive Psychotherapy on the Self-Efficacy and Psychological Wellbeing of Children with Thalassemia. Egyptian Journal of Health Care, 12(3), 797-812.
Mardhiyah , A., Mediani , . , Panduragan , S., Yosep, I., & Lindayani , L. (2022). Hope and quality of life among adolescents with thalassemia: a cross-sectional study in Indonesia . Open Access Macedonian Journal of Medical Sciences, 10(G), 667-673. https://doi.org/10.3889/oamjms.2022.9597
Mardhiyah , A., Panduragan , S., Mediani , . , & Joseph, I. (2023). Nursing interventions to improve quality of life among children and adolescents with thalassemia: a scoping review. Journal of Multidisciplinary Healthcare, Volume 16, 1749-1762. https://doi.org/10.2147/jmdh.s415314
Mardhiyah, A., Panduragan, S. L., Mediani, H. S., & Yosep, I. (2023). Nursing interventions to improve quality of life among children and adolescents with thalassemia: a scoping review. Journal of Multidisciplinary Healthcare, 1749-1762. https://doi.org/10.2147/JMDH.S415314
Mulyana, A. M., Rakhmawati, W., Wartakusumah, R., Fitri, S. Y. R., & Juniarti, N. (2023). The efficacy of internet-based interventions in family-centered empowerment among children with chronic diseases: A mixed-methods systematic review. Journal of Multidisciplinary Healthcare, 3415-3433. https://doi.org/10.2147/JMDH.S440082
Pérez, Y., Medlow, S., Ho, J., & Steinbeck, K. (2019). Mobile and web-based apps that support self-management and transition in young people with chronic illness: systematic review. Journal of Medical Internet Research, 21(11), e13579. https://doi.org/10.2196/13579
Rodrigues, N. G., Han, C. Q. Y., Su, Y., Klainin‐Yobas, P., & Wu, X. V. (2022). Psychological impacts and online interventions of social isolation amongst older adults during COVID‐19 pandemic: A scoping review. Journal of Advanced Nursing, 78(3), 609-644. https://doi.org/10.1111/jan.15063
Roshan, F. S., Rahmani, N., & Nikrouz, L. (2024). Investigating various interventions to improve the quality of life of children and adolescents suffering from chronic diseases–a systematic review. International Journal of Adolescent Medicine and Health, 36(6), 525-540.
Sadek, E., Elsayh , K., Mohammed, F., Mohamed, N., & Faheem, S. (2020). Sellf-efficacy of adollescents with thalassemia major. Assiut Scientific Nursing Journal, 8(20), 53-59. https://doi.org/10.21608/asnj.2020.87263
Sadiq, I. Z., Abubakar, F. S., Usman, H. S., Abdullahi, A. D., Ibrahim, B., Kastayal, B. S., ... & Hassan, H. A. (2024). Thalassemia: Pathophysiology, diagnosis, and advances in treatment. Thalassemia Reports, 14(4), 81-102. https://doi.org/10.3390/thalassrep14040010
Schleider, J. L., Smith, A. C., & Ahuvia, I. (2023). Realizing the untapped promise of single‐session interventions for eating disorders. International Journal of Eating Disorders, 56(5), 853-863. https://doi.org/10.1002/eat.23920
Seyed Nematollah Roshan, F., Navipor, H., & Alhani, F. (2021). Practical intervention on quality of life of anemic girls and their mothers. International Journal of Adolescent Medicine and Health, 33(3), 107-113.
Shamsi, A., Amiri, F., Ebadi, A., & Ghaderi, M. (2017). The effect of partnership care model on mental health of patients with thalassemia major. Depression Research and Treatment, 2017, 1-7. https://doi.org/10.1155/2017/3685402
Siebenhüner, A. R., Mikolasek, M., Witt, C. M., & Barth, J. (2021). Improvements in health might contradict adherence to mobile health interventions: findings from a self-care cancer app study. The Journal of Alternative and Complementary Medicine, 27(S1), S-115. https://doi.org/10.1089/acm.2020.0111
Sumendap, I. B., Sutadi, H., Fauziah, E., & Wahidiyat, P. A. (2025). Effect of Lactobacillus reuteri probiotic on gingival index and Interleukin-1β levels of children with thalassemia experiencing gingivitis. Journal of Indian Society of Pedodontics and Preventive Dentistry, 43(2), 231-235.
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
Taheri, P., Nooryan , K., Karimi, Z., & Zoladl , M. (2020). Effect of individual psychotherapy with a focus on self-efficacy on quality of life in patients with thalassemia major: a clinical trial. Journal of Clinical Care and Skills, 1(2), 49-54. https://doi.org/10.52547/jccs.1.2.49
Urtekin, D., & Eroglu, S. A. (2024). Effect of training based on Orem's self-care deficit theory on breast cancer patients' management of chemotherapy-related side effects and self-care behaviors: A randomized controlled trial. European Journal of Oncology Nursing, 73, 102698. https://doi.org/10.1016/j.ejon.2024.102698
Wangi, K., Shaleha, R., Wijaya, E., & Birriel, B. (2025). Psychosocial Problems in People Living with Thalassemia: A Systematic Review. SAGE Open Nursing, 11, 23779608251323811. https://doi.org/10.1177/23779608251323811
Witt, S., Schuett, K., Wiegand-Grefe, S., Boettcher, J., & Quitmann, J. (2023). Living with a rare disease-experiences and needs in pediatric patients and their parents. Orphanet journal of rare diseases, 18(1), 242. https://doi.org/10.3390/sports12010037
Yip, J. Y. C. (2021). Theory-based advanced nursing practice: A practice update on the application of Orem's self-care deficit nursing theory. SAGE Open Nursing, 7, 23779608211011993. https://doi.org/10.1177/23779608211011993
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