The Relationship Between Quality of Life of Adolescents with Thalassemia and Parents' Quality of Life: A Cross Sectional Study
Abstract
Thalassemia is a lifelong genetic disorder that requires regular and routine treatment. Adolescents with thalassemia major experience changes in physical, emotional, school, and family. Parents of thalassemia adolescents are the ones who care for and are always involved in the process of caring for their children, this condition can affect the quality of life. This study aims to identify the relationship between the quality of life of adolescents with thalassemia major and the quality of life of parents at RSUD Dr Slamet Garut. This study is a quantitative study with a cross-sectional approach. The sampling technique was consecutive sampling. Respondents of this study were 64 adolescents with thalassemia major and parents. Data collection was carried out at the time before the patient had a blood transfusion using the TranQol questionnaire and WHOQOL-BREF. TranQol to measure the quality of life of adolescents that has been tested for validity and reliability with a value of r=0,112-0,743 and α=0,806. WHOQOL-BREF to measure the quality of life of parents that has been testet for validity and reliability with a value of r=0,5-0,7 and α=0,41-0,77. The data analysis used was univariate analysis and bivariate analysis using the spearman rank correlation test. The results of this study found that the quality of life of adolescents with thalassemia major at RSUD Dr. Slamet Garut as many as 53 respondents (82.8%) was good, as many as 11 respondents (17.2%) was bad. While the quality of life of parents as many as 61 respondents (95.3%) is good, as many as 3 respondents (4.7%) was bad. Based on the results of the spearman rank test, the results obtained p=0.001 (p<0.05) which means that there is a significant relationship between the quality of life of adolescents with thalassemia major and the quality of life of parents. So it can be concluded that the better the quality of life of adolescents with thalassemia major, the better the quality of life of parents.
References
Ahmed, C. J., Aziz, K. F., & Amin, M. R. (2023). Caregiving Burden and Quality of Life among Caregivers of Thalassemia Patients at the Thalassemia and Congenital Blood Disorders Center, Sulaimaniyah, Iraq. 57(10), 1–9.
Ali, H. M., Muhyi, A., & Riastit, Y. (2021). Hubungan Usia, Kadar Hemoglobin Pretransfusi dan Lama Sakit terhadap Kualitas Hidup Anak Talasemia di Samarinda. 3(4), 441–447.
Astarani, K., & Siburian, G. G. (2016). Gambaran Kecemasan Orang Tua pada Anak dengan Thalasemia. Jurnal STIKES RSBK, 9(1), 20–25.
Biswas, B., Naskar, N. N., Basu, K., Dasgupta, A., Basu, R., & Paul, B. (2023). An Epidemiological Study of the Quality of Life of Children With Beta-Thalassemia Major (β-TM) and Its Correlates in Kolkata, West Bengal, India. Cureus, March. https://doi.org/10.7759/cureus.36888
Bulan, S. (2009). Faktor-faktor yang Berhubungan dengan Kualitas Hidup Anak Thalassemia Beta Mayor. In Faktor-Faktor yang Berhubungan dengan Kualitas Hidup Anak Thalassemia Beta Mayor (Vol. 9, Issue Thalassemia Beta Mayor).
Couture, M., Ducharme, F., Sasseville, M., Bradette, C., & Gaudet, K. (2020). A Qualitative Systematic Review of Factors Affecting Caregivers’ Decision-Making for Care Setting Placements for Individuals with Dementia. Geriatric Nursing, 41(2), 172–180. https://doi.org/10.1016/j.gerinurse.2019.09.002
Dahnil, F., Mardhiyah, A., & Widianti, E. (2017). Kajian Kebutuhan Supportive Care pada Orang Tua Anak Penderita Talasemia. NurseLine Journal, 2(1), 1. https://doi.org/10.19184/nlj.v2i1.5994
Fitriliani, P., Rakhmawati, W., Rukmasari, E. A., & ... (2020). Gambaran Kualitas Hidup Orang Tua yang Merawat Remaja Talasemia di Kabupaten Garut. Jurnal Keperawatan BSI, 8(2), 173–182. http://ejurnal.ars.ac.id/index.php/keperawatan/article/view/295%0Ahttp://ejurnal.ars.ac.id/index.php/keperawatan/article/download/295/247
Habsyie, N. Al, Marliani, R., & Hermawati, N. (2022). Resiliensi , Dukungan Sosial dan Religiusitas Seorang Ibu dengan Tiga Anak Penderita Thalasemia. 9(1), 9–16. https://doi.org/10.47399/jpi.v9i1.133
Hanifah, M. R. (2020). Gambaran Anak Thalasemia di Rumah Sakit Umum Daerah dr. Soediran Mangun Sumarso Wonogiri. 1, 16–20.
Kamil, J., Gunantara, T., & Suryani, Y. D. (2020). Analisis Faktor-Faktor yang Memengaruhi Kualitas Hidup Penderita Talasemia Anak di RSUD Al-Ihsan Kabupaten Bandung Tahun 2019. Jurnal Integrasi Kesehatan & Sains, 2(2), 140–144. https://doi.org/10.29313/jiks.v2i2.5848
Kemenkes. (2018). Remaja. https://ayosehat.kemkes.go.id/kategori-usia/remaja
Kemenkes. (2019). Putuskan Mata Rantai Talasemia, untuk Indonesia Lebih Sehat. https://p2ptm.kemkes.go.id/tag/putuskan-mata-rantai-talasemia-untuk-indonesia-lebih-sehat
Lusiani, L., Mediani, H. S., & Nurhidayah, I. (2017). Analisis Faktor yang Berhubungan dengan Kualitas Hidup Anak Penyandang Talasemia Mayor. 153–166.
Mariani, D., Rustina, Y., Nasution, Y., Kemenkes Tasikmalaya, P., Barat, J., & Ilmu Keperawatan, F. (2014). Analisis Faktor yang Mempengaruhi Kualitas Hidup Anak Thalasemia Beta Mayor. Jurnal Keperawatan Indonesia, 17(1), 2354–2920.
Mazzone, L., Battaglia, L., Andreozzi, F., Romeo, M. A., & Mazzone, D. (2009). Clinical Practice and Epidemiology Emotional impact in β -thalassaemia major children following cognitive-behavioural family therapy and quality of life of caregiving mothers. 6, 1–6. https://doi.org/10.1186/1745-0179-5-5
Mediani, H. S., Ramdhanie, G. G., & Fikri, A. (2022). Kualitas Hidup Anak Usia Sekolah Penyandang Thalasemia. Jurnal Obsesi : Jurnal Pendidikan Anak Usia Dini, 6(3), 2243–2250. https://doi.org/10.31004/obsesi.v6i3.1933
Nikmah, M., & Mauliza. (2018). Quality of Life in Patients with Thalassemia by Using Pediatric Quality of Life Inventory 4.0 Generic Core Scales Instrument at Pediatric Ward in Rumah Sakit Umum Cut Meutia Aceh Utara. Sari Pediatri, 20(1), 11–16.
Nuraeni, F., Hendrawati, S., & Ramdhanie, G. G. (2022). Gambaran Psychological Well Being Orang Tua yang Memiliki Anak Thalasemia Mayor. Jurnal Kesehatan Bakti Tunas Husada: Jurnal Ilmu-Ilmu Keperawatan, Analis Kesehatan Dan Farmasi, 22(2), 91. https://doi.org/10.36465/jkbth.v22i2.1051
Nurhasanah, N. (2017). Pengaruh Psikoedukasi terhadap Koping Orang Tua dalam Merawat Anak dengan Thalasemia di Kota Banda. Idea Nursing Journal, 8, 56–62. https://www.semanticscholar.org/paper/PENGARUH-PSIKOEDUKASI-TERHADAP-KOPING-ORANG-TUA-DI-Nurhasanah/c558cf822a57b4375c929aaea976e4bf41971c4f#citing-papers
Poengoet, B. N. S. R., Sungkar, E., & Pandji, T. D. (2017). Quality of Life in Thalassemia Major Patients: Reliability and Validity of Indonesian Version of TranQol Questionnaire. International Journal of Integrated Health Sciences, 5(2), 75–79. https://doi.org/10.15850/ijihs.v5n2.1011
Pratiwi, K. D. (2017). Dukungan Sosial Orang Tua Dalam Pengobatan Dan Perawatan pada Anak Penderita Thalasemia. 6(3), 1–15.
Putranto, K. A., Salimo, H., & Riza, M. (2021). Perbedaan Kualitas Hidup pada Remaja Talasemia Mayor dengan Gizi Kurang dan Gizi Baik menggunakan Instrumen PedsQL. Sari Pediatri, 23(3), 171. https://doi.org/10.14238/sp23.3.2021.171-7
Putri, A. E., & Purwati, N. H. (2019). Dukungan Keluarga dan Kualitas Hidup dengan Pasien Remaja Thalassemia Beta Mayor. 033(2), 43–50.
Rahmi, U., & Putri, R. (2021). Kualitas Hidup (Quality of Life) Caregiver Pasien Demensia. Jurnal Akademi Keperawatan Husada Karya Jaya, 7(2), 35–39. http://ejurnal.husadakaryajaya.ac.id/index.php/JAKHKJ/article/download/166/130
Raj, M., Sudhakar, A., Roy, R., Champaneri, B., Joy, T. M., & Kumar, R. K. (2017). Health-related Quality of Life in Indian Children: A Community-based Cross-sectional Survey. Indian J Med Res, 145. https://doi.org/10.4103/ijmr.IJMR_447_16
Rusmil, K. (2013). Kualitas Hidup Remaja dengan Kondisi Penyakit Kronis. https://www.idai.or.id/artikel/seputar-kesehatan-anak/kualitas-hidup-remaja-dengan-kondisi-penyakit-kronis
Salim, O. C., Sudharma, N. I., Kusumaratna, R. K., & Hidayat, A. (2007). Validity and Reliability of World Health Organization Quality of Life-BREF to Assess the Quality of Life in the Elderly. 26(1), 27–38.
Septyana, G., Mardhiyah, A., & Widianti, E. (2019). The Mental Burden of Parents of Children with Thalassemia. Jurnal Keperawatan Padjadjaran, 7(1), 94–102. https://doi.org/10.24198/jkp.v7i1.1154
Supartini Y., T. Sulastri, dan Y. S. . (2017). Kualitas Hidup Anak yang Menderita Thalasemia. Academia.Edu, 1–11. https://www.academia.edu/download/52590103/kualitas_hidup_pasien_thalasemia.pdf
Thavorncharoensap, M., Torcharus, K., Nuchprayoon, I., Riewpaiboon, A., Indaratna, K., & Ubol, B. (2010). Factors Affecting Health-Related Quality of Life in Thai Children with Thalassemia. 1–10.
Trehan, A., Sharma, N., & Das, R. (2015). Clinicoinvestigational and Demographic Profile of Children with Thalassemia Major. 31(1), 121–126. https://doi.org/10.1007/s12288-014-0388-y
Utami, T. A., & Anggraeni, L. D. (2023). Korelasi Penghasilan Orang Tua terhadap Kualitas Hidup Anak yang Mengalami Talasemia Mayor. 10(2), 148–158.
Widadi, S. Y., & Oktaviani, S. (2019). Pengalaman Ibu Merawat Anak Thalasemia di RSUD Dr.Slamet Garut. https://doi.org/10.33482/medika.v6i2.111
Widadi, S. Y., Ramdani, H. T., & Nurafita, H. (2023). Kualitas Hidup Anak Penderita Thalassemia Mayor Usia 6-18 Tahun Di Poliklinik Thalassemia Rsud Dr. Slamet. Jurnal Kesehatan Masyarakat, 7(1), 226–236.
Yengil, E., Acipayam, C., Kokacya, M. H., Kurhan, F., Oktay, G., & Ozer, C. (2014). Anxiety, Depression and Quality of Life in Patients with Beta Thalassemia Major and Their Caregivers. International Journal of Clinical and Experimental Medicine, 7(8), 2165–2172.
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