Hubungan Antara Tingkat Kesadaran Orang Tua dengan Perilaku Pencegahan Berulang Thalasemia

Authors

  • Ai Mardhiyah Departemen Keperawatan Anak, Universitas Padjadjaran, Indonesia https://orcid.org/0000-0002-0593-9936
  • Aat Sriati Departemen Keperawatan Jiwa, Universitas Padjadjaran, Indonesia
  • Ayu Prawesti Departemen Keperawatan Kritis, Universitas Padjadjaran, Indonesia
  • Ati Surya Mediawati Departemen Keperawatan Dasar, Universitas Padjadjaran, Indonesia
  • Ikeu Nurhidayah Departemen Keperawatan Anak, Universitas Padjadjaran, Indonesia

DOI:

https://doi.org/10.31004/obsesi.v7i4.4897

Keywords:

Kesadaran orang tua, Perilaku Pencegahan, Thalasemia

Abstract

Prevalensi penyakit thalassemia di Jawa Barat mengalami peningkatan setiap tahunnya. Program pencegahan sekunder thalasemia yaitu pencegahan pada keluarga yang beresiko atau keluarga yang dicurigai sebagai pembawa sifat untuk mencegah terjadi kembali kelahiran dengan thalasemia mayor. Tujuan penelitian ini untuk mengidentifikasi hubungan antara kesadaran orang tua anak penderita thalasemia dengan prilaku pencegahan thalasemia. Desain penelitian ini adalah cross-sectional study dengan sampel sejumlah 114 orang tua anak dengan thalasemia. Pengumpulan data menggunakan instrumen kesadaran dan prilaku orang tua dalam pencegahan talasemia. Analisis data menggunakan uji korelasional melalui uji Chi Square. Hasil penelitian ini menunjukkan bahwa tidak terdapat hubungan antara kesadaran orang tua dengan prilaku pencegahan thalassemia, kemungkinan adanya faktor-faktor penghambat orang tua yang hampir setengahnya sudah mempunyai kesadaran tetapi tidak berprilaku pencegahan thalasemia dikarenakan biaya, kurang memahami prosedur, takut, masih berharap punya anak kembali. Saran penelitian ini adalah orang tua perlu meningkatkan kesadaran dengan mengembangkan intervensi atau strategi pencegahan thalasemia melalui konseling dan peer support group pada orang tua.

Downloads

Download data is not yet available.

References

Angastiniotis, M., & Lobitz, S. (2019). Thalassemias: An overview. International Journal of Neonatal Screening, 5(1), 1–11. https://doi.org/10.3390/ijns5010016

Az-zahra, W. F., Mardhiyah, A., & Nurhidayah, I. (2019). The Depression Categories of Adolescent with Beta-Thalassemia Major. Journal of Nursing Care, 2(1). https://doi.org/10.24198/jnc.v2i1.20162

Bagul, Abhay, S., Porwal, A., & Jain, M. (2013). Psychosocial problems in thalassemic adolescents and young adults. Chronicles of Young Scientists, 4(1), 21. https://doi.org/10.4103/2229-5186.108800

Bala, J., & Sarin, J. (2014). Empowering Parents of Children with Thalassemia. International Journal of Nursing Care, 2(1), 22. https://doi.org/10.5958/j.2320-8651.2.1.005

Daud, M. A. (2020). Hubungan Ferritin Serum dengan Berat Badan dan Tinggi Badan Pada Penderita Thalasemia Β Mayor. Jurnal Ilmiah Kesehatan Sandi Husada, 12(2), 665–672. https://doi.org/10.35816/jiskh.v12i2.377

Elsadek, A. M., Hassan, N., Shahwan, M., & Jairoun, A. A. (2022). Exploring the Gap Between Knowledge and Behavior Regarding Thalassemia Among University Students: A Cross-Sectional Study in the United Arab Emirates. Journal of Community Health, 47(3), 392–399. https://doi.org/10.1007/s10900-022-01066-8

Fookolaee, S. P., Talebishelimaki, S., Tahmasebi, H., Arab, M., Akbarnatajbishe, K., Darvish-Khezri, H., & Kosaryan, M. (2021). The effect of E-learning on lifestyle in adolescents with thalassemia major. Adv Nurs Midwifery, 30.

Ghafoor, M., Leghari, M., Mustafa, G., & Naveed, S. (2016). Level of Awareness about Thalassemia among Parents of Thalassaemic Children. Journal of Rawalpindi Medical College, 201620, 209–211. http://journalrmc.com/index.php/JRMC/article/view/177

Hakeem, G. L. A., Mousa, S. O., Moustafa, A. N., Mahgoob, M. H., & Hassan, E. E. (2018). Health-related quality of life in pediatric and adolescent patients with transfusion-dependent ß-thalassemia in upper Egypt (single center study). Health and Quality of Life Outcomes, 16(1), 1–9. https://doi.org/10.1186/s12955-018-0893-z

Hossain, M. S., Mahbub Hasan, M., Petrou, M., Telfer, P., & Mosabbir, A. Al. (2021). The parental perspective of thalassaemia in Bangladesh: lack of knowledge, regret, and barriers. Orphanet Journal of Rare Diseases, 16(1), 315. https://doi.org/10.1186/s13023-021-01947-6

Husna, N., Sanka, I., Al Arif, A., Putri, C., Leonard, E., Satuti, N., & Handayani, N. (2017). Prevalence and distribution of thalassemia trait screening. J Med Sci, 49(3), 106–113.

Jabbarifard, F., Sharifi, T., Solati, K., & Ghazanfari, A. (2019). The effectiveness of acceptance and commitment therapy on perceived stress, resilience, and the quality of life in thalassemia major patients. Journal of Shahrekord University of Medical Sciences, 21(2), 91–97. https://doi.org/10.34172/jsums.2019.16

Kalra, R. K., Kaur, D., Sodhi, M., & Kaur, J. (2019). Knowledge, attitude and practice in parents of chronically transfused thalassemic patients regarding thalassemia in thalassemia day care unit in government medical college, Amritsar, Punjab, India. Int J Contemp Pediatr., 6. https://doi.org/10.18203/2349-3291.ijcp20194718

Kavitha, K., & Padmaja, A. (2019). Effectiveness of SCOPE Programme on Health Related Quality of Life and Health Status of Thalassemic Children : A Pilot Study. 9(August), 282–287.

Kemenkes RI. (2023). Deteksi TBC Capai Rekor Tertinggi di Tahun 2022. https://sehatnegeriku.kemkes.go.id/

Kharaman-nia, F., Rezaei, H., Roustaei, N., Etemadfar, P., & Hosseini, N. (2023). Comparing the effects of self- care education by lecture and smartphone application on self-efficacy of patients with thalassemia. BMC Medical Informatics and Decision Making, 23(1), 21. https://doi.org/10.1186/s12911-023-02097-4

Kharyal, R., Kumari, V., Mrunalini, V. T., Naik, M., Joshi, P., & Seth, T. (2021). 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

Maheen, H., Malik, F., Siddique, B., & Qidwai, A. (2015). Assessing parental knowledge about thalassemia in a thalassemia center of Karachi, Pakistan. J Genet Couns., 2. https://doi.org/10.1007/s10897-015-9830-z

Manwani, D., Doyle, M. H., Davidson, L., Mallea, M., Silver, E. J., Jackson, J., Chhabra, R., Morrone, K., Minniti, C., Rastogi, D., Stein, R. E. K., Oyeku, S., Bauman, L. J., Lapp, V., Chase, S. K., Hunt, W. R., Linnemann, R. W., Middour-Oxler, B., Elliott, T., … Taher, A. T. (2017). Health-related quality of life in adults with transfusion-independent thalassaemia intermedia compared to regularly transfused thalassaemia major: new insights. American Journal of Hematology, 43(4), 848–850. https://doi.org/10.1186/s40064-016-3568-4

Mardhiyah, A., Panduragan, S. L., & Mediani, H. S. (2022). Reducing Psychological Impacts on Children with Chronic Disease via Family Empowerment: A Scoping Review. In Healthcare (Vol. 10, Issue 10). https://doi.org/10.3390/healthcare10102034

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, 16, 1749–1762. https://doi.org/10.2147/JMDH.S415314

Mariani, D., Mulatsih, S., Haryanti, F., & Sutaryo. (2020). Life Experience of Adolescents with Thalassemia: A Qualitative Research with Phenomenological Approach. Indian Journal of Public Health Research & Development, 11(1 SE-Articles), 1045–1049. https://doi.org/10.37506/ijphrd.v11i1.646

Mat, M. A. C., Yaacob, L. H., & Zakaria, R. (2020). Parental knowledge on thalassaemia and factors associated with refusal to screen their children. Malaysian Journal of Medical Sciences, 27(1), 124–133. https://doi.org/10.21315/mjms2020.27.1.13

Meiyanti, Novia Indriani, S., Margo, E., & Merijanti, L. T. S. (2020). Factors affecting the quality of life of thallasemia β major children. International Journal of Pharmaceutical Research, 12(4), 2346–2353. https://doi.org/10.31838/ijpr/2020.12.04.324

Mettananda, S., Pathiraja, H., Peiris, R., Bandara, D., De Silva, U., Mettananda, C., & Premawardhena, A. (2019). Health related quality of life among children with transfusion dependent β-thalassaemia major and haemoglobin e β-thalassaemia in Sri Lanka: A case control study. Health and Quality of Life Outcomes, 17(1), 1–13. https://doi.org/10.1186/s12955-019-1207-9

Mirhosseini, N. Z., Shahar, S., Ghayour-Mobarhan, M., Banihashem, A., Kamaruddin, N. A., Hatef, M. R., & Esmaili, H. A. (2013). Bone-related complications of transfusion-dependent beta thalassemia among children and adolescents. Journal of Bone and Mineral Metabolism, 31(4), 468–476. https://doi.org/10.1007/s00774-013-0433-1

Moukalled, N. M., Bou-Fakhredin, R., & Taher, A. T. (2018). Deferasirox: Over a decade of experience in thalassemia. Mediterranean Journal of Hematology and Infectious Diseases, 10(1), 1–13. https://doi.org/10.4084/MJHID.2018.066

Najafi, M. K., Fariba, B., Eshagh, D., & Sakineh, S. (2012). The effect of family-centered empowerment model on the knowledge and attitudes of mothers with thalassemia children TT - تأثیر الگوی توانمندسازی خانواده محور بر آگاهی Ùˆ نگرش مادران دارای Ùرزند تالاسمی. Payeshj, 11(4), 519–527. http://payeshjournal.ir/article-1-448-en.html

Rashid, M. A. ul H., & Abbasi, S.-U.-R. S. (2020). Theorizing Beta Thalassemia Major: an Overview of Health Sociology. International and Multidisciplinary Journal of Social Sciences, 9(1 SE-Articles), 51–75. https://doi.org/10.17583/rimcis.2020.5113

Renylda, R. (2018). Kecemasan Orang Tua Pada Anak Dengan Thalasemia Di Poli Anak Rumah Sakit Umum Daerah H. Abdul Manap Kota Jambi Tahun 2015. Jurnal Ilmiah Universitas Batanghari Jambi, 18(1), 110. https://doi.org/10.33087/jiubj.v18i1.438

Ribeil, J.-A., Arlet, J.-B., Dussiot, M., Cruz Moura, I., Courtois, G., & Hermine, O. (2013). Ineffective Erythropoiesis in β-Thalassemia. The Scientific World Journal, 2013, 394295. https://doi.org/10.1155/2013/394295

Sarayloo, K., Moghadam, Z. B., Saffari, M., Esmaily, H., & Najmabadi, K. M. (2019). The effect of educational program based on theory of planned behavior on health promotion and childbearing of minor thalassemia couples. J Educ Health Promotion, 8. https://doi.org/10.4103/jehp.jehp_109_19

Valizadeh, L., Zamanzadeh, V., Ghahramanian, A., & Hasani Narenjbaghi, S. (2021). Assertiveness in the patients with thalassaemia major: A qualitative study. Nursing Open, 8(5), 2587–2594. https://doi.org/10.1002/nop2.796

Wan Adnan, W. N. A., Ab, H., Ab Hamid, S. A., Mohd Zulkifli, M., Zilfalil, B., & Hamid, A. (2017). Factors Affecting Health-Related Quality Of Life Among Paediatric Patients With Thalassemia: A Review Of Literature. Malaysian Journal of Paediatrics and Child Health. https://ejournal-kertacendekia.id/index.php/nhjk/article/view/340

Downloads

Additional Files

Published

01-09-2023

Check Article Index

Google Scholar
Portal Garuda
BASE Index

How to Cite

Mardhiyah, A., Sriati, A., Prawesti, A., Mediawati, A. S., & Nurhidayah, I. (2023). Hubungan Antara Tingkat Kesadaran Orang Tua dengan Perilaku Pencegahan Berulang Thalasemia. Jurnal Obsesi : Jurnal Pendidikan Anak Usia Dini, 7(4), 4848–4856. https://doi.org/10.31004/obsesi.v7i4.4897

Issue

Vol. 7 No. 4 (2023)

Section

Articles

License

Authors who publish with this journal agree to the following terms:
  • Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under a Creative Commons Attribution-ShareAlike 4.0 International License that allows others to share the work with an acknowledgement of the works authorship and initial publication in this journal.
  • Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journals published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal.
  • Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work (See The Effect of Open Access).