Investigating the reasons for marriage among couples with thalassemia minor, in Iran

Abstract

Thalassemia is one of the most prevalent genetic disorders in Iran. The birth of a child with thalassemia major is associated with many problems for the family, and society. In the present study, the reasons for marriage among people with thalassemia minor in Iran, in spite of receiving medical advice against it, have been investigated. The present study was a qualitative content analysis conducted in 2019 with the participation of 12 couples (24 participants) with thalassemia minor living in Rafsanjan, Iran; and 2 counselors working with thalassemia patients. Data collection was conducted through in-depth interviews. All interviews were recorded and transcribed. The text was read several times, categorized and main themes were extracted according to content analysis methods. The present study shows that giving inadequate or inaccurate information to people, strong emotional attachment between couples, taking the test at the wrong time, family interference and family insistence on marriage, having seen cases with no problems, and specific thoughts and beliefs are the most important reasons for marriage among couples with thalassemia minor in Iran. According to the results of the present study, the importance of providing thorough and accurate information to the public, setting an appropriate time for counseling and screening which is not immediately before the marriage ceremony, and briefing more efficiently at the time of counseling can help prevent marriage among couples with thalassemia minor in Iran.

Pengenalan Thalassemia dan Konseling Genetik Pra-Nikah pada Mahasiswa

“…Pada banyak negara seperti Italia (sejak 1943) dan Inggris (sejak 1973), program skrining dan aborsi telah diimplementasikan dengan sukses Di Iran, program skrining dan kontrol thalassemia telah dilaksanakan lebih dari satu dekade, meskipun demikian, masih banyak kasus thalassemia major yang dilaporkan. Berdasarkan petunjuk kesehatan terkini di Iran, konseling pra-nikah adalah suatu keharusan (Hasanshahi & Khanjani, 2021). Ada beberapa alasan mengapa penting untuk mengembangkan program pencegahan thalassemia: 1).…”

“…Mencegah kematian karena thalassemia yang tidak diobati; 3). Mahalnya biaya pengobatan dan beban yang harus ditanggung pasien, keluarga dan layanan kesehatan nasional (Ali & Grer, 2019;Hasanshahi & Khanjani, 2021).…”

Costs, burdens and the prevention of genetic disorders: what role for professional influence?

“…In a recent contribution from Iran (Hasanshahi and Khanjani 2021), the authors investigated why couples who both carry beta-thalassemia married despite screening and prevention programmes. They conclude that 'providing thorough and accurate information at the appropriate time can help prevent marriage among couples with thalassemia minor in Iran'.…”