Persepsi Calon Pasangan Menikah Di Banyumas Terhadap Skrining Thalassemia : Studi Kualitatif

The Perception of Married Couples in Banyumas for Thalassemia Screening : A Qualitative Study

Abstract

Thalassemia is the most common genetic disease in Indonesia. The purpose of this study was to determine the response of couples who will get married to the premarital screening policy so that a full picture of the readiness of the bride and groom's couple to prevent thalassemia is known. The study used qualitative research with a phenomenological approach with semi-structured in-depth interviews as a method of data collection. Sampling using purposive sampling got informants as many as ten people with criteria aged 20-30 years, domiciled in Banyumas, in a serious relationship (fiance), and not visually impaired. In-depth interviews with the subject of the research were carried out by recording aids accompanied by observations of the situation, facial expressions, and body language of the subject. Transcripts were carried out after data saturation occurred with several interviews. The data were analyzed used through coding until the making of the research theme.

The results of the study illustrated that most of the informants claimed to have heard and known of thalassemia from various media. Most informants know the consequences of thalassemia and how the life and treatment of thalassemia children. The informant’s understanding varied from very understanding to not understanding. The group of informants who responded positively to premarital thalassemia screening claimed to want to conduct premarital thalassemia screening with various considerations, including the potential for diseases that would burden life in the future. In the negative group, premarital screening can inhibit ongoing relationships. Concerning the national program, most of the informants agreed or followed this regulation if applied by the government. Informants differed on the continuation of the relationship after knowing the positivity of the screening results. Some couples will continue the relationship; there are also couples who will try to find alternative ways related to the future of their marriage. The study concludes that there are various individual responses related to premarital thalassemia screening. Each response is based on various backgrounds of potential partners. In general, the informants will follow and obey if the government will apply the premarital screening policy. Informants differed on the continuation of the relationship after knowing the positivity of the screening results.

Thalassemia adalah penyakit genetik yang paling banyak ditemukan di Indonesia. Tujuan penelitian ini untuk mengetahui respon pasangan yang akan melangsungkan pernikahan terhadap kebijakan skrining premarital, sehingga dapat diketahui gambaran utuh tentang kesiapan pasangan calon pengantin terhadap upaya pencegahan thalassemia. Studi menggunakan penelitian kualitatif dengan pendekatan fenomenologi dengan wawancara mendalam semi-terstruktur sebagai metode pengumpulan data. Pengambilan sampel dengan purposive sampling mendapatkan informan sebanyak 10 orang dengan kriteria usia 20-30 tahun, berdomisili di Banyumas, berada dalam hubungan serius (tunangan), dan bukan tunanetra. Wawancara mendalam kepada subjek penelitian dilakukan dengan alat bantu rekam disertai observasi terhadap situasi, ekspresi wajah, dan bahasa tubuh subjek. Transkrip dilakukan setelah terjadi saturasi data dengan beberapa kali wawancara. Data dilakukan analisis melalui pengkodingan sampai pembuatan pokok tema penelitian. Hasil penelitian menggambarkan bahwa sebagian besar informan mengaku pernah mendengar dan mengetahui thalassemia dari berbagai media. Sebagian besar informan mengetahui konsekuensi thalassemia dan bagaimana kehidupan dan pengobatan terhadap anak thalassemia. Pemahaman informan bervariasi mulai dari sangat paham sampai tidak paham. Kelompok informan yang merespon positif terhadap skrining premarital thalassemia mengaku mau melakukan skrining premarital thalassemia dengan berbagai pertimbangan diantaranya potensi penyakit yang akan memberatkan kehidupan di masa mendatang. Pada kelompok negatif berpendapat bahwa skrining premarital dapat menghambat hubungan yang sudah berlangsung. Kaitannya dengan program nasional sebagian besar informan menyetujui atau mengikuti regulasi ini jika diberlakukan oleh pemerintah. Informan berbeda pendapat akan kelanjutan hubungan setelah mengetahui positivitas hasil skrining. Ada pasangan yang akan terus melanjutkan hubungan, ada pula pasangan yang akan mencoba mencari jalan alternatif terkait masa depan pernikahan mereka. Kesimpulan penelitian adalah terdapat berbagai respon individu terkait skrining premarital thalassemia. Masing masing respon dilandasi oleh berbagai macam latar belakang calon pasangan. Secara umum informan akan mengikuti dan patuh jika kebijakan skringing premarital ini akan diberlakukan oleh pemerintah. Informan berbeda pendapat akan kelanjutan hubungan setelah mengetahui positivitas hasil skrining.