School of Biological Science, Faculty of Biology, Medicine and Health, University of Manchester, Manchester, UK.
Department of Genetic Medicine, King Abdulaziz University Hospital, Jeddah, Saudi Arabia.
J Genet Couns. 2022 Aug;31(4):922-936. doi: 10.1002/jgc4.1562. Epub 2022 Feb 22.
Genetic services are rapidly growing in the Arab world leading to increasing number of patients being diagnosed with genetic disorders. Islam is the only/major religion of the local population in these countries. Muslim patients integrate religion in virtually every aspect of their lives, and it is vital to understand the role of Islam on their coping and decision-making in the context of genetic counseling. This will help provide patients with the most appropriate services aligned to their religious beliefs and will improve outcomes. Increasing numbers of patients are being diagnosed with Long QT syndrome in Saudi Arabia. Using semi-structured interviews, this study explored the role of Islam on the lived experience of 13 Saudi participants diagnosed with autosomal dominant Long QT syndrome (3/13) or who are carriers of Jervell and Lange-Nielsen syndrome (10/13). The interviews investigated how they made sense of living with the condition in light of their religion/spirituality. The data were analyzed using interpretative phenomenological analysis and produced four superordinate themes: 1) Common belief and idiosyncratic interpretation; 2) Using religion to justify positive reframing of current illnesses; 3) Interplay between belief in medicine and in religion; and 4) Complex impact of diagnosis on religiosity. The results show that the participants' idiosyncratic interpretations of the religious principles, not the principles themselves, had an important influence on their coping, medical decision-making, perceptions regarding the cause of their disease, and compliance with medical advice. A novel insight of the current study is that the personal understanding and interpretation of medical information played the greatest role in the decision-making process, and not the religious beliefs. Thus, it is important for health professionals to give patients' information in a manner that is clear and detailed in order for them to facilitate an informed decision, and to ensure that they fully understand the implications.
遗传服务在阿拉伯世界迅速发展，导致越来越多的患者被诊断出患有遗传疾病。这些国家的当地居民主要信仰伊斯兰教。穆斯林患者将宗教融入生活的方方面面，了解伊斯兰教在他们的应对和遗传咨询决策中的作用至关重要。这有助于为患者提供与他们的宗教信仰相符的最合适的服务，并改善结果。在沙特阿拉伯，越来越多的患者被诊断出患有长 QT 综合征。本研究采用半结构化访谈，探讨了伊斯兰教对 13 名沙特参与者（3/13 为常染色体显性长 QT 综合征患者，10/13 为 Jervell 和 Lange-Nielsen 综合征携带者）生活经历的影响。访谈调查了他们如何根据自己的宗教/信仰来理解这种疾病。数据采用解释现象学分析进行分析，得出四个超主题：1）共同的信仰和独特的解释；2）利用宗教来证明当前疾病的积极重新定义；3）对医学和宗教的信仰之间的相互作用；4）诊断对宗教信仰的复杂影响。研究结果表明，参与者对宗教原则的独特解释而不是原则本身，对他们的应对、医疗决策、对疾病原因的看法以及对医疗建议的遵守有重要影响。当前研究的一个新见解是，个人对医疗信息的理解和解释在决策过程中起着最大的作用，而不是宗教信仰。因此，卫生专业人员以清晰和详细的方式向患者提供信息非常重要，以便他们能够做出明智的决策，并确保他们充分理解其影响。
