{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,21]],"date-time":"2026-07-21T20:38:02Z","timestamp":1784666282502,"version":"3.55.0"},"reference-count":54,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2022,2,22]],"date-time":"2022-02-22T00:00:00Z","timestamp":1645488000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2022,8]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>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\u2010making 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\u2010structured 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\u2010Nielsen 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\u2019 idiosyncratic interpretations of the religious principles, not the principles themselves, had an important influence on their coping, medical decision\u2010making, 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\u2010making process, and not the religious beliefs. Thus, it is important for health professionals to give patients\u2019 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.<\/jats:p>","DOI":"10.1002\/jgc4.1562","type":"journal-article","created":{"date-parts":[[2022,2,23]],"date-time":"2022-02-23T09:14:51Z","timestamp":1645607691000},"page":"922-936","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["Exploring the role of Islam on the lived experience of patients with Long QT Syndrome in Saudi Arabia"],"prefix":"10.1002","volume":"31","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0668-1762","authenticated-orcid":false,"given":"Khadijah H.","family":"Bakur","sequence":"first","affiliation":[{"name":"School of Biological Science Faculty of Biology, Medicine and Health University of Manchester  Manchester UK"},{"name":"Department of Genetic Medicine King Abdulaziz University Hospital  Jeddah Saudi Arabia"},{"name":"Princess Al\u2010Jawhara Centre of Excellence in Research of Hereditary Disorders King AbdulAziz University  Jeddah Saudi Arabia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0594-3078","authenticated-orcid":false,"given":"Jumana Y.","family":"Al\u2010Aama","sequence":"additional","affiliation":[{"name":"Princess Al\u2010Jawhara Centre of Excellence in Research of Hereditary Disorders King AbdulAziz University  Jeddah Saudi Arabia"},{"name":"Department of Genetic Medicine Faculty of Medicine King Abdulaziz University  Jeddah Saudi Arabia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Zuhair N.","family":"Alhassnan","sequence":"additional","affiliation":[{"name":"Department of Medical Genetics King Faisal Specialist Hospital &amp; Research Center College of Medicine Alfaisal University  Riyadh Saudi Arabia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2157-0200","authenticated-orcid":false,"given":"Helen","family":"Brooks","sequence":"additional","affiliation":[{"name":"Division of Nursing, Midwifery and Social Work School of Health Sciences Manchester Academic Health Science Centre University of Manchester  Manchester UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tara","family":"Clancy","sequence":"additional","affiliation":[{"name":"Manchester Centre for Genomic Medicine St. Mary\u2019s Hospital  Manchester UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Waleed","family":"Manea","sequence":"additional","affiliation":[{"name":"Heart Center Department King Faisal Specialist Hospital &amp; Research Center  Riyadh Saudi Arabia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8261-6375","authenticated-orcid":false,"given":"Saud A.","family":"Takroni","sequence":"additional","affiliation":[{"name":"Department of Medical Genetics King Faisal Specialist Hospital &amp; Research Center  Riyadh Saudi Arabia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3590-6542","authenticated-orcid":false,"given":"Fiona","family":"Ulph","sequence":"additional","affiliation":[{"name":"Division of Psychology and Mental Health Faculty of Biology, Medicine and Health Manchester Academic Health Science Centre University of Manchester  Manchester UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2022,2,22]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1177\/10432302012006008"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10943\u2010014\u20109962\u20108"},{"key":"e_1_2_9_4_1","unstructured":"Al\u2010Aama J. &Alhashem A.(2018).An overview of medical genetic services in Saudi Arabia. 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