{"title":"格陵兰蔗糖不耐症患者的个人生活经历和对基因研究的态度--一项用户研究。","authors":"Silvia Isidor, Ninna Senftleber, Cecilie Schnoor, Kristine Skoett Pedersen, Lene Seibæk, Marit Eika Jørgensen, Jette Marcussen","doi":"10.1080/22423982.2024.2383023","DOIUrl":null,"url":null,"abstract":"<p><p>There is high prevalence of the genetic <i>SI</i> variant c.273_274delAG in the sucrase-isomaltase-encoding gene in Greenland, resulting in congenital sucrase-isomaltase deficiency and thereby an inability to digest sucrose, the most common dietary sugar. There are no studies of Greenlanders' everyday experiences of sucrose intolerance related to this genetic variant. This study therefore explored, how Greenlandic people experience sucrose intolerance influences life and their attitudes towards research in health and genetics. The study is qualitative, using semi-structured focus groups and/or individual telephone interviews. The analysis was based on the phenomenological-hermeneutic approach of Paul Ricoeur, consisting naïve reading, structural analysis, interpretation and discussion. We identified two themes; \"Sucrose intolerance impacts daily living\", dealt with physical and emotional reactions and coping with social adaption to activities. And \"openness to participate in genetic and health research\" were caused by participants wanting more knowledge to improve their people and family's life. The study concluded that most of the participants with symptoms of sucrose intolerance experienced the impact in their daily life, both physically, emotionally, and socially. Further, they expressed openness to participate in health and genetic research. There is a need for more accessible health knowledge and support from health care to manage sucrose intolerance.</p>","PeriodicalId":13930,"journal":{"name":"International Journal of Circumpolar Health","volume":null,"pages":null},"PeriodicalIF":1.3000,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11268221/pdf/","citationCount":"0","resultStr":"{\"title\":\"Personal experiences of living with sucrose intolerance and attitudes towards genetic research in Greenland - a user study.\",\"authors\":\"Silvia Isidor, Ninna Senftleber, Cecilie Schnoor, Kristine Skoett Pedersen, Lene Seibæk, Marit Eika Jørgensen, Jette Marcussen\",\"doi\":\"10.1080/22423982.2024.2383023\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>There is high prevalence of the genetic <i>SI</i> variant c.273_274delAG in the sucrase-isomaltase-encoding gene in Greenland, resulting in congenital sucrase-isomaltase deficiency and thereby an inability to digest sucrose, the most common dietary sugar. There are no studies of Greenlanders' everyday experiences of sucrose intolerance related to this genetic variant. This study therefore explored, how Greenlandic people experience sucrose intolerance influences life and their attitudes towards research in health and genetics. The study is qualitative, using semi-structured focus groups and/or individual telephone interviews. The analysis was based on the phenomenological-hermeneutic approach of Paul Ricoeur, consisting naïve reading, structural analysis, interpretation and discussion. We identified two themes; \\\"Sucrose intolerance impacts daily living\\\", dealt with physical and emotional reactions and coping with social adaption to activities. And \\\"openness to participate in genetic and health research\\\" were caused by participants wanting more knowledge to improve their people and family's life. The study concluded that most of the participants with symptoms of sucrose intolerance experienced the impact in their daily life, both physically, emotionally, and socially. Further, they expressed openness to participate in health and genetic research. 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引用次数: 0
摘要
在格陵兰岛,蔗糖酶-异麦芽糖酶编码基因中的遗传 SI 变异 c.273_274delAG 的发病率很高,导致先天性蔗糖酶-异麦芽糖酶缺乏症,从而无法消化蔗糖这种最常见的膳食糖。目前还没有关于格陵兰人与这种基因变异有关的蔗糖不耐受的日常经验的研究。因此,本研究探讨格陵兰人如何体验蔗糖不耐受对生活的影响,以及他们对健康和遗传学研究的态度。本研究采用半结构化焦点小组和/或个人电话访谈的定性研究方法。分析以保罗-呂科爾(Paul Ricoeur)的現象學-哲學方法為基礎,包括天真閱讀、結構分析、詮釋和討論。我们确定了两个主题:"蔗糖不耐受对日常生活的影响",涉及身体和情绪反应以及应对社会适应活动。而 "参与遗传和健康研究的开放性 "则是由于参与者希望获得更多知识,以改善自己和家人的生活。研究得出结论,大多数有蔗糖不耐受症状的参与者在日常生活中都感受到了身体、情绪和社交方面的影响。此外,他们还表示愿意参与健康和基因研究。在控制蔗糖不耐受方面,需要更多的健康知识和来自医疗保健的支持。
Personal experiences of living with sucrose intolerance and attitudes towards genetic research in Greenland - a user study.
There is high prevalence of the genetic SI variant c.273_274delAG in the sucrase-isomaltase-encoding gene in Greenland, resulting in congenital sucrase-isomaltase deficiency and thereby an inability to digest sucrose, the most common dietary sugar. There are no studies of Greenlanders' everyday experiences of sucrose intolerance related to this genetic variant. This study therefore explored, how Greenlandic people experience sucrose intolerance influences life and their attitudes towards research in health and genetics. The study is qualitative, using semi-structured focus groups and/or individual telephone interviews. The analysis was based on the phenomenological-hermeneutic approach of Paul Ricoeur, consisting naïve reading, structural analysis, interpretation and discussion. We identified two themes; "Sucrose intolerance impacts daily living", dealt with physical and emotional reactions and coping with social adaption to activities. And "openness to participate in genetic and health research" were caused by participants wanting more knowledge to improve their people and family's life. The study concluded that most of the participants with symptoms of sucrose intolerance experienced the impact in their daily life, both physically, emotionally, and socially. Further, they expressed openness to participate in health and genetic research. There is a need for more accessible health knowledge and support from health care to manage sucrose intolerance.
期刊介绍:
The International Journal of Circumpolar Health is published by Taylor & Francis on behalf of the Circumpolar Health Research Network [CircHNet]. The journal follows the tradition initiated by its predecessor, Arctic Medical Research. The journal specializes in circumpolar health. It provides a forum for many disciplines, including the biomedical sciences, social sciences, and humanities as they relate to human health in high latitude environments. The journal has a particular interest in the health of indigenous peoples. It is a vehicle for dissemination and exchange of knowledge among researchers, policy makers, practitioners, and those they serve.
International Journal of Circumpolar Health welcomes Original Research Articles, Review Articles, Short Communications, Book Reviews, Dissertation Summaries, History and Biography, Clinical Case Reports, Public Health Practice, Conference and Workshop Reports, and Letters to the Editor.