Ilisimatusarfik, University of Greenland, Institute of Health and Nature, Nuuk, Greenland.
Steno Diabetes Center Copenhagen, Copenhagen, Denmark.
Int J Circumpolar Health. 2024 Dec;83(1):2383023. doi: 10.1080/22423982.2024.2383023. Epub 2024 Jul 23.
There is high prevalence of the genetic 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.
在格陵兰,蔗糖酶-异麦芽糖酶编码基因中的遗传变异 c.273_274delAG 非常普遍,导致先天性蔗糖酶-异麦芽糖酶缺乏症,从而无法消化蔗糖,而蔗糖是最常见的膳食糖。目前还没有研究格陵兰人的这种遗传变异与蔗糖不耐受相关的日常体验。因此,本研究探讨了格陵兰人对蔗糖不耐受的体验如何影响生活,以及他们对健康和遗传学研究的态度。本研究采用定性研究方法,使用半结构式焦点小组和/或个人电话访谈。分析基于保罗·利科的现象学-解释学方法,包括朴素阅读、结构分析、解释和讨论。我们确定了两个主题;“蔗糖不耐受影响日常生活”,涉及身体和情绪反应以及对活动的社会适应的应对;“对参与遗传和健康研究的开放性”是由于参与者希望获得更多知识以改善他们的人民和家庭的生活。研究得出的结论是,大多数有蔗糖不耐受症状的参与者在日常生活中都经历了这种影响,无论是在身体上、情感上还是在社交上。此外,他们表示愿意参与健康和遗传研究。需要提供更多通俗易懂的健康知识,并得到医疗保健的支持,以管理蔗糖不耐受。
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