Peningkatan Kualitas Hidup Anak Thalasemia Pada Masa Pandemi Covid-19
DOI:
https://doi.org/10.18196/berdikari.v11i1.17313Keywords:
thalassemia children, quality of life, family and community empowermentAbstract
Thalassemia is a disorder of hemoglobin synthesis with clinical manifestations of severe anemia. With a total of 35 sufferers in North Lampung, thalassemia causes complex health problems, especially during the Covid-19 Pandemic, including 1. The limited blood supply for transfusions due to decreased donors; 2. The problem of malnutrition leading to reduced immunity; 3. Psychological and school problems; 4. Not all thalassemia children in North Lampung had Hb-analysis as a diagnostic procedure; and 5. Low consumption of iron chelation drugs to prevent hemosiderosis. The community service aims to improve the quality of life for thalassemia children in North Lampung during the Covid-19 Pandemic. The Community service activities used a process approach (preparation, implementation, evaluation) involving several professions and related stakeholders (interprofessional collaboration). The target of the activities was thalassemia children and families who are members of the Association of Parents with Thalassemia (POPTI) North Lampung, with a total of 35 people. Data were analyzed with proportional descriptive analysis. The community service activities were 1. Formation of a Thalassemia Care Community consisting of 75 permanent blood donor volunteers; 2. Health education about the nutritional needs of thalassemia children and provision of nutrition packages to 33 people (94.28%); 3. Counseling on psychosocial problems and learning disorders in schools; 4. Facilitating story books in the treatment room of HM Mayjend Ryacudu Hospital; 5. Laboratory examination of Hb analysis and ferritin levels and socialization of the management of iron chelation treatment to 23 people (65.71%) of thalassemia children and their families. All activities were carried out with health protocols during the Covid-19 Pandemic. Suggestion: It is necessary to develop a network and increase the membership of the Thalassemia Care Community to six permanent donors for one thalassemia child. The Originality/Value/ Implication of this community service activity is the formatting of the North Lampung Thalassemia Care Network and Community.
References
Abarca, R. M. (2021) Talasemia Genetik Dasar dan Pengelolaan Terkini, Nuevos sistemas de comunicación e información.
Aji, D. N. et al. (2016) ‘Faktor–Faktor yang Berhubungan dengan Kualitas Hidup Pasien Thalassemia Mayor di Pusat Thalassemia Departemen Ilmu Kesehatan Anak RSCM’, Sari Pediatri, 11(2), p. 85. doi: 10.14238/sp11.2.2009.85-9.
Arijanty, L. and Nasar, S. S. (2016) ‘Masalah Nutrisi pada Thalassemia’, Sari Pediatri, 5(1), p. 21. doi: 10.14238/sp5.1.2003.21-6.
Baghianimoghadam, M. H. et al. (2011) ‘Health related quality of life in children with thalassaemia assessed on the basis of SF-20 questionnaire in Yazd, Iran: A case-control study’, Central European Journal of Public Health. Central European Journal of Public Health, 19(3), pp. 165–169. doi: 10.21101/cejph.a3640.
‘Berdikari : Jurnal Pengabdian Masyarakat Indonesia Pemberdayaan Komunitas UMKM “ Usaha Mandiri Sakinah ” Nogotirto ,’ (2020), 2(2), pp. 88–93. doi: 10.11594/bjpmi.02.02.04.Nur.
Fauzi, L. et al. (2018) ‘Empowerement of Trained Health Volunteers to Increase Detection Rate of Children with Developmental Delay in Urban Kendal, Indonesia’, Proceedings of the International Seminar on Public Health and Education 2018 (ISPHE 2018). Atlantis Press. doi: 10.2991/isphe-18.2018.53.
Ganis, I. (2011) ‘Pengalaman ibu dalam merawat dengan anak thalasemia di Jakarta’.
Hastuti, R. P. (2014) ‘Pengaruh Paket Edukasi Thalasemia (PEdTal) Terhadap Kualitas Hidup Anak Thalasemia’, Jurnal Kesehatan, V(2), pp. 137–144. Available at: https://ejurnal.poltekkes-tjk.ac.id/index.php/JK/article/view/45.
Hastuti, R. P. (2015) ‘Analisis Faktor Yang Berhubungan Dengan Tingkat Kecemasan Orang Tua Anak Thalasemia Di RSUD Ahmad Yani Metro’, Jurnal Kesehatan Metro, VIII(2), pp. 49–54.
Maulina Ramawati Hanifah (no date) ‘GAMBARAN ANAK THALASEMIA DI RUMAH SAKIT UMUM DAERAH dr. SOEDIRAN MANGUN SUMARSO WONOGIRI Maulina’, in.
Mulyani and Fahrudin, A. (2011) ‘Penderita Talasemia Mayor Di Kota Bandung’, Informasi, 16(03), pp. 157–176.
Nurhasanah (2017) ‘Pengaruh Psikoedukasi Terhadap Koping Orang Tua Dalam Merawat Anak Dengan Thalasemia Di Kota Banda’, Idea Nursing Journal, 8(2), pp. 56–62.
RI, K. (2018) keputusan menteri kesehatan republik indonesia nomor hk.01.07/menkes/1/2018 tentang pedoman nasional pelayanan kedokteran tata. available at: https://doi.org/10.1016/j.gecco.2019.e00539%0Ahttps://doi.org/10.1016/j.foreco.2018.06.029%0Ahttp://www.cpsg.org/sites/cbsg.org/files/documents/Sunda Pangolin National Conservation Strategy and Action Plan %28LoRes%29.pdf%0Ahttps://doi.org/10.1016/j.forec.
Wahidiyat, I. wahidiyat ; P. A. (2006) ‘Genetic problems at present and their challenges in the future: Thalassemia as a model’, Paediatrica Indonesiana, 46(4), pp. 9–10. doi: 10.14238/pi.
Wahidiyat, P. A. and Diah Iskandar, S. (2018) ‘Pentingnya Mempertahankan Kadar Hemoglobin Pra-Transfusi Tinggi pada Pasien Thalassemia Mayor’, Pentingnya Mempertahankan Kadar Hemoglobin eJKI, 6(3), pp. 6–9. doi: 10.23886/ejki.6.10142.Abstrak.
Downloads
Published
Issue
Section
License
Copyright
Authors retain copyright and grant BERDIKARI Jurnal Inovasi dan Penerapan IPTEK the right of first publication with the work simultaneously licensed under an Attribution 4.0 International (CC BY 4.0) that allows others to remix, adapt and build upon the work with an acknowledgment of the work's authorship and of the initial publication in BERDIKARI Jurnal Inovasi dan Penerapan IPTEK.
Authors are permitted to copy and redistribute 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 BERDIKARI Jurnal Inovasi dan Penerapan IPTEK
License
Articles published in the BERDIKARI Jurnal Inovasi dan Penerapan IPTEK) are licensed under an Attribution 4.0 International (CC BY 4.0) license. You are free to:
- Share — copy and redistribute the material in any medium or format.
- Adapt — remix, transform, and build upon the material for any purpose, even commercially.
This license is acceptable for Free Cultural Works. The licensor cannot revoke these freedoms as long as you follow the license terms. Under the following terms:
- Attribution — You must give appropriate credit, provide a link to the license, and indicate if changes were made. You may do so in any reasonable manner, but not in any way that suggests the licensor endorses you or your use.
- No additional restrictions — You may not apply legal terms or technological measures that legally restrict others from doing anything the license permits.