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"Kusta dapat menyebabkan kecacatan permanen dan mempengaruhi aspek sosial serta ekonomi penderita. Di Kota Pariaman, persentase penderita kusta yang menyelesaikan pengobatan menurun dalam beberapa tahun terakhir. Penelitian ini bertujuan untuk mengeksplorasi bentuk dukungan sosial yang diterima penderita kusta selama pengobatan berdasarkan Social Support Theory for Health, menggunakan metode kualitatif dengan desain studi kasus. Informan penelitian terdiri dari delapan penderita kusta, tujuh petugas Puskesmas, seorang pemegang program kusta di Dinas Kesehatan, dan delapan anggota keluarga penderita. Data dikumpulkan melalui wawancara mendalam dan Focus Group Discussion pada bulan Maret-April 2024 dan dianalisis secara tematik. Hasil penelitian menunjukkan semua penderita kusta menjalani pengobatan selama 12 bulan. Mayoritas penderita konsisten dalam pengobatan meskipun menghadapi efek samping dan motivasi yang rendah. Semua penderita menerima dukungan sosial berupa dukungan emosional, instrumental, informasi, penghargaan, dan jaringan sosial, baik dari keluarga, petugas Puskesmas dan pengelola program kusta Dinas Kesehatan Kota Pariaman. Dukungan emosional meningkatkan motivasi penderita, sementara dukungan instrumental dari keluarga seperti bantuan finansial berperan dalam memfasilitasi proses pengobatan. Puskesmas dan Dinas Kesehatan memberikan dukungan melalui penyuluhan tentang kusta dan deteksi dini ketika melakukan kunjungan rumah dan pengantaran obat. Dinas Kesehatan juga berkoordinasi dengan Dinas Sosial untuk memberikan bantuan materi kepada penderita. Penelitian ini juga menemukan bahwa penderita tetap aktif dalam kegiatan sosial meskipun cenderung menyembunyikan kondisinya. Untuk itu, Kota Pariaman dapat membentuk komunitas khusus bagi penderita kusta sebagai upaya membangun jaringan dukungan yang lebih terstruktur dan menjadi forum pertukaran informasi dan sumber dukungan bagi penderita.

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Leprosy can cause permanent disabilities and affect the social and economic aspects of the patients' lives. In the city of Pariaman, the percentage of leprosy patients completing their treatment has decreased in recent years. This study aims to analyze the forms of social support received by leprosy patients during treatment based on the Social Support Theory for Health, using a qualitative method with a case study design. The research informants consisted of eight leprosy patients, seven public health center officers, one leprosy program officer at the Health Office, and eight family members of the patients. Data were collected through in-depth interviews and Focus Group Discussions conducted in March-April 2024 and analyzed thematically. The results of the study showed that all leprosy patients underwent treatment for 12 months. The majority of patients remained consistent in their treatment despite facing side effects and low motivation. All patients received social support in the form of emotional, instrumental, informational, appraisal, and social network support from family, Puskesmas staff, and the leprosy program managers at the Pariaman Health Office. Emotional support helped increase the patients' motivation, while instrumental support from family, such as financial assistance, facilitated the treatment process. The Puskesmas and Health Office provided support through leprosy education and early detection during home visits and medication deliveries. The Health Office also coordinated with the Social Service to provide material assistance to the patients. The study also found that patients remained active in social activities, although they tended to hide their condition. Therefore, it is recommended that the city of Pariaman establish a special community for leprosy patients as an effort to build a more structured support network and become a forum for information exchange and support for the patients."

"ABSTRAKPendahuluan: Kusta merupakan penyakit menular yang belum sepenuhnya dapatdikendalikan, dan menjadi masalah kesehatan masyarakat karena cacat yang ditimbulkan,salah satunya akibat reaksi kusta. Terapi utama untuk reaksi kusta adalah kortikosteroid,dalam dosis standar 12 minggu sesuai rekomendasi WHO dan Kemenkes RI. Denganterapi standar ini, kesembuhan dapat tidak tercapai dan sering terjadi rekurensi, sementaradurasi pemberian yang lama diduga dapat memberikan perbaikan klinis lebih baik sertabertahan lebih lama. Bukti efikasi kortikosteroid pada reaksi kusta masih kurang, dandosis optimal serta lama terapi yang dibutuhkan sangat bervariasi. Di sisi lain, kebutuhanakan kortikosteroid dosis tinggi jangka panjang menimbulkan kesulitan menghindari efeksamping, mencakup hampir semua sistem organ. Dengan adanya perbedaan penetapandurasi pemberian kortikosteroid pada reaksi kusta, sementara penggunaan jangka panjangcenderung meningkatkan efek samping, maka diperlukan analisis perbedaan efektivitasterapi dan efek samping antara kortikosteroid 12 minggu dengan >12 minggu.Metode: Penelitian ini merupakan studi analitik observasional dengan desain kohortretrospektif yang membandingkan efektivitas terapi dan kejadian efek samping antarapenggunaan kortikosteroid 12 minggu dengan >12 minggu pada pasien kusta denganreaksi, melibatkan seluruh pasien baru kusta dengan reaksi tanpa batasan usia, yangberobat ke RSCM dan Puskesmas Cakung selama periode 1 Januari 2015 sampai 31Desember 2017. Data sekunder dikumpulkan dari rekam medik, dan pengamatandilakukan sampai Desember 2018. Efektivitas terapi dinilai dari perbaikan klinis hinggakortikosteroid dapat diturunkan bertahap dan dihentikan, tanpa ada rekurensi dalam 3bulan setelah siklus pertama selesai. Efek samping dinilai dari seluruh efek sampingterkait kortikosteroid yang tercatat pada rekam medik.Hasil: Dari 195 subjek, 57 (29.2%) menggunakan kortikosteroid selama 12 minggu, dan138 (70.8%) menggunakannya selama >12 minggu. Efektivitas terapi berupa perbaikanklinis tanpa rekurensi selama 3 bulan terjadi pada 38 (66.7%) pasien kelompok 12 minggudan 106 (76.8%) pasien kelompok >12 minggu (RR 0.604 dengan IK 95% 0.307 1.189,p 0.143). Dari 145 subjek, efek samping kortikosteroid terjadi pada 12 (31.6%) pasienkelompok 12 minggu dan 70 (65.4%) pasien kelompok >12 minggu (RR 0.244 denganIK 95% 0.111 0.538, p<0.001). Dari total 171 kejadian efek samping yang timbul,37.4% adalah efek samping ringan berupa dispepsia, kelainan kulit dan lipodistrofi,sementara 62.6% adalah efek samping berat berupa gangguan neuropsikiatrik, kelainanmata, penyakit kardiovaskular, perdarahan saluran cerna, kelainan metabolik-hormonal,serta reaktivasi infeksi.Kesimpulan: Tidak ada perbedaan efektivitas berupa perbaikan klinis tanpa rekurensiselama 3 bulan, antara penggunaan kortikosteroid 12 minggu dengan >12 minggu,sementara efek samping yang timbul berbeda signifikan, yakni durasi pemberian yanglebih panjang menimbulkan kejadian efek samping 4 kali lebih banyak.

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ABSTRACTIntroduction: Leprosy is an infectious disease that has not been fully controlled, and hasbecome a public health problem because of the defects caused, one of which is a leprosyreactions. The main therapy for leprosy reactions is corticosteroids, in a standard 12weeks dose according to WHO recommendations and the Indonesian Ministry of Health.Through this standard, therapy healing can not be achieved and recurrence often occurs,while long duration of administration thought to provide better clinical improvement andlast longer. Evidence related to the efficacy of corticosteroids in the leprosy reactions isstill lacking, and the optimal dose and duration of therapy needed varies greatly. On theother hand, the need for long-term high-dose corticosteroids makes it difficult to avoidadverse effects, covering almost all organ systems. With the differences in the durationof corticosteroid administration in leprosy reactions, while long-term use tends to increaseadverse effects, an analysis of the differences in therapeutic effectiveness and adverseeffects between corticosteroid use for 12 weeks and >12 weeks is needed.Method: This study is an observational analytic study with a retrospective cohort designthat compares the effectiveness of therapy and the incidence of adverse effects betweencorticosteroid use for 12 weeks and >12 weeks in leprosy patients with reactions,involving all new leprosy patients without age restriction, who seek treatment at RSCMand Puskesmas Cakung during the period of January 1, 2015 to December 31, 2017.Secondary data was collected from medical records, and observations were carried outuntil December 2018. Effectiveness of therapy was assessed from clinical improvementto corticosteroids can be gradually reduced and stopped, without recurrence within 3months after the first cycle was completed. Adverse effects were assessed from allcorticosteroid-related side effects recorded in the medical record.Result: Of 195 subjects, 57 (29.2%) used corticosteroids for 12 weeks, and 138 (70.8%)used it for >12 weeks. The effectiveness of therapy in the form of clinical improvementwithout recurrence for 3 months occurred in 38 (66.7%) patients in the 12 weeks groupand 106 (76.8%) patients in the >12 weeks group (RR 0.604 with 95% CI 0.307 - 1.189,p 0.143). Of 145 subjects, corticosteroids adverse effects occurred in 12 (31.6%) patientsin the 12 weeks group and 70 (65.4%) patients in the >12 weeks group (RR 0.244 with95% CI 0.111-0.538, p <0.001). Of the total 171 occurrences of adverse effects, 37.4%were mild such as dyspepsia, skin disorders and lipodystrophy, while 62.6% were severein the form of neuropsychiatric disorders, eye disorders, cardiovascular disease,gastrointestinal bleeding, metabolic-hormonal disorders, and reactivation of infection.Conclusion: There is no difference in effectiveness in the form of clinical improvementwithout recurrence for 3 months, between corticosteroid use for 12 weeks compared with>12 weeks, while the adverse effects that arise differ significantly, namely the longerduration of administration causes 4 times more events."