Peran Dukungan Keluarga terhadap Kualitas Hidup Penderita Hemofilia
Keywords:
dukungan keluarga, hemofiliaAbstract
Hemofilia A dan B merupakan gangguan perdarahan yang diturunkan. Gangguan ini akibat kurangnya protein koagulasi faktor VIII pada hemofilia jenis A dan IX pada hemofilia jenis B. Perdarahan sendi dijumpai 70-80% di area pergelangan kaki, siku, dan lutut. Perdarahan sendi yang berulang menyebabkan cedera jaringan sinovial, tulang, dan tulang rawan. Hal ini memberikan efek gangguan pada aktivitas sehari-harinya. Dukungan keluarga mampu memengaruhi kesehatan fisik dan mental melalui pembentukan emosional, peningkatan kognitif, dan pembentukan perilaku. Tujuan penelitian ini untuk mengetahui peran dukungan keluarga terhadap kualitas hidup penderita hemofilia. Desain penelitian menggunakan deskriptif analitik dengan pendekatan cross sectional. Lokasi penelitian di Himpunan Masyarakat Hemofilia Indonesia Yogyakarta. Perhitungan sampel analitik korelatif ditemukan sebanyak 42 responden. Analisis data menggunakan uji nonparametrik Somers’d dengan derajat kemaknaan α = 0,05. Dukungan keluarga penderita hemofilia sebagian besar adalah tinggi sebanyak 35 (83,3%) responden. Kualitas hidup penderita hemofilia sebagian besar baik sebanyak 29 (69%) responden. Ada hubungan dukungan keluarga dengan kualitas hidup penderita hemofilia (p-value:0,005) dengan hubungan keeratan sedang (0,66). Hubungan dukungan keluarga dengan variabel domain kualitas hidup menunjukkan ada hubungan yang signifikan dengan keeratan cukup untuk domain keterbatasan fisik dan keeratan kuat untuk domain fungsi fisik.
References
Budiarty, S., & Nafianti, S. (2020). Menilai Kualitas Hidup Anak Penyandang Hemofilia. Cermin Dunia Kedokteran, 47(8), 466–470.
Chen, C.-M., Yang, Y.-H., Chang, C.-H., Chen, C.-C., & Chen, P.-C. (2016). The utilization of rehabilitation in patients with hemophilia A in Taiwan: a nationwide population-based study. Plos One, 11(9), e0164009.
Chen, C., Huang, K., Chen, C., Huang, S., Huang, C., Chen, Y., & Hsu, S. (2015). The impact of joint range of motion limitations on healthâ€related quality of life in patients with haemophilia A: a prospective study. Haemophilia, 21(3), e176–e184.
Fuenmayor Castaño, A., Jaramillo Restrepo, M., & Salinas Durán, F. (2017). Quality of life in a population with haemophilia: A cross-sectional study from a single haemophilia treatment center. Revista Colombiana de ReumatologÃa, 24(1), 18–24.
Halimeh, S., Siebert, M., & Von Mackensen, S. (2019). How Caring for Toddlers and Young Children with Severe Haemophilia Impacts on Caregiver’s Burden. Blood, 134, 3461. https://doi.org/https://doi.org/10.1182/blood-2019-131185
Hemophilia, W. F. of. (2019). Report on the Annual Global Survey 2018. Retrieved from http://www1.wfh.org/publications/files/pdf-1731.pdf
Hermans, C., Noone, D., Benson, G., Dolan, G., Eichler, H., Jiménez-Yuste, V., … Mancuso, M. E. (2022). Hemophilia treatment in 2021: Choosing theâ€optimal†treatment using an integrative, patient-oriented approach to shared decision-making between patients and clinicians. Blood Reviews, 52, 100890. https://doi.org/https://doi.org/10.1016/j.blre.2021.100890
Khair, K., Nissen, F., Silkey, M., Burke, T., Shang, A., Aizenas, M., … Noone, D. (2020). Effect of Moderate and Severe Hemophilia a on Daily Life in Children and Their Caregivers: A CHESS Paediatrics Study Analysis. Blood, 136(Supplement 1), 43–45. https://doi.org/10.1182/blood-2020-134658
Lattimore, S. U., & Hofstetter, M. T. (2019). Patient and Family Engagement during Treatment Change to Emicizumab at a Hemophilia Treatment Center. Blood, 134, 5796. https://doi.org/https://doi.org/10.1182/blood-2019-131030
Lawrenti, H. (2021). Hemofilia dan Perkembangan Terapinya. Cermin Dunia Kedokteran, 48(9), 362–367.
Permana, R. A., Arief, Y. S., & Bakar, A. (2020). Dukungan Keluarga Berhubungan dengan Perilaku Perawatan Diri Pasien Gagal Jantung di Surabaya. Jurnal Penelitian Kesehatan" SUARA FORIKES"(Journal of Health Research" Forikes Voice"), 12(1), 26–30.
Rachmawati, Y., Perwitasari, D. A., & Adnan, A. (2014). Validasi Kuesioner SF-36 versi Indonesia terhadap pasien hipertensi di Puskesmas Yogyakarta. PHARMACY: Jurnal Farmasi Indonesia (Pharmaceutical Journal of Indonesia), 11(1).
Rodriguez-Merchan, E. C. (2018). Treatment of musculo-skeletal pain in haemophilia. Blood Reviews, 32(2), 116–121. https://doi.org/https://doi.org/10.1016/j.blre.2017.09.004
Santoro, C., Di Minno, M. N. D., Corcione, A., Di Minno, G., Martinelli, M., Mancuso, M. E., … Mattia, C. (2022). Improving assessment and management of pain in hemophilia: an Italian Delphi consensus statement. Blood Reviews, 51, 100885. https://doi.org/https://doi.org/10.1016/j.blre.2021.100885
Septarini, A. D., & Windiastuti, E. (2016). Terapi Profilaksis versus On-Demand pada Pasien Hemofilia Berat dengan Hemartrosis. Sari Pediatri, 11(5), 311–316.
Taha, M. Y., & Hassan, M. K. (2014). Health-related quality of life in children and adolescents with hemophilia in Basra, Southern Iraq. Journal of Pediatric Hematology/Oncology, 36(3), 179–184.
Touré, S. A., Seck, M., Sy, D., Senghor, A. B., Faye, B. F., & Diop, S. (2022). Clinical outcome and incidence of inhibitor development in severe hemophilia patients receiving low-dose prophylaxis: a 3-year follow-up study in Senegal, West Africa. Hematology, Transfusion and Cell Therapy. https://doi.org/https://doi.org/10.1016/j.htct.2022.04.004
Trindade, G. C., Viggiano, L. G. de L., Brant, E. R., Lopes, C. A. de O., Faria, M. L. de, Ribeiro, P. H. N. de S., … Pinheiro, M. de B. (2019). Evaluation of quality of life in hemophilia patients using the WHOQOL-bref and Haemo-A-Qol questionnaires. Hematology, Transfusion and Cell Therapy, 41(4), 335–341. https://doi.org/https://doi.org/10.1016/j.htct.2019.03.010.
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