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...
Published in: | International Journal of Circumpolar Health |
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2024
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Online Access: | https://doi.org/10.1080/22423982.2024.2383023 https://pubmed.ncbi.nlm.nih.gov/39042812 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11268221/ |
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ftpubmed:39042812 2024-09-15T18:02:08+00:00 Personal experiences of living with sucrose intolerance and attitudes towards genetic research in Greenland - a user study. Isidor, Silvia Senftleber, Ninna Schnoor, Cecilie Pedersen, Kristine Skoett Seibæk, Lene Jørgensen, Marit Eika Marcussen, Jette 2024 Dec https://doi.org/10.1080/22423982.2024.2383023 https://pubmed.ncbi.nlm.nih.gov/39042812 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11268221/ eng eng Atypon https://doi.org/10.1080/22423982.2024.2383023 https://pubmed.ncbi.nlm.nih.gov/39042812 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11268221/ Int J Circumpolar Health ISSN:2242-3982 Volume:83 Issue:1 Greenland Sucrose intolerance attitudes to research daily living focus group food genetics research qualitative research Journal Article 2024 ftpubmed https://doi.org/10.1080/22423982.2024.2383023 2024-07-26T16:03:00Z 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. Article in Journal/Newspaper Circumpolar Health Greenland greenlander* greenlandic PubMed Central (PMC) International Journal of Circumpolar Health 83 1 |
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Open Polar |
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PubMed Central (PMC) |
op_collection_id |
ftpubmed |
language |
English |
topic |
Greenland Sucrose intolerance attitudes to research daily living focus group food genetics research qualitative research |
spellingShingle |
Greenland Sucrose intolerance attitudes to research daily living focus group food genetics research qualitative research Isidor, Silvia Senftleber, Ninna Schnoor, Cecilie Pedersen, Kristine Skoett Seibæk, Lene Jørgensen, Marit Eika Marcussen, Jette Personal experiences of living with sucrose intolerance and attitudes towards genetic research in Greenland - a user study. |
topic_facet |
Greenland Sucrose intolerance attitudes to research daily living focus group food genetics research qualitative research |
description |
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. |
format |
Article in Journal/Newspaper |
author |
Isidor, Silvia Senftleber, Ninna Schnoor, Cecilie Pedersen, Kristine Skoett Seibæk, Lene Jørgensen, Marit Eika Marcussen, Jette |
author_facet |
Isidor, Silvia Senftleber, Ninna Schnoor, Cecilie Pedersen, Kristine Skoett Seibæk, Lene Jørgensen, Marit Eika Marcussen, Jette |
author_sort |
Isidor, Silvia |
title |
Personal experiences of living with sucrose intolerance and attitudes towards genetic research in Greenland - a user study. |
title_short |
Personal experiences of living with sucrose intolerance and attitudes towards genetic research in Greenland - a user study. |
title_full |
Personal experiences of living with sucrose intolerance and attitudes towards genetic research in Greenland - a user study. |
title_fullStr |
Personal experiences of living with sucrose intolerance and attitudes towards genetic research in Greenland - a user study. |
title_full_unstemmed |
Personal experiences of living with sucrose intolerance and attitudes towards genetic research in Greenland - a user study. |
title_sort |
personal experiences of living with sucrose intolerance and attitudes towards genetic research in greenland - a user study. |
publisher |
Atypon |
publishDate |
2024 |
url |
https://doi.org/10.1080/22423982.2024.2383023 https://pubmed.ncbi.nlm.nih.gov/39042812 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11268221/ |
genre |
Circumpolar Health Greenland greenlander* greenlandic |
genre_facet |
Circumpolar Health Greenland greenlander* greenlandic |
op_source |
Int J Circumpolar Health ISSN:2242-3982 Volume:83 Issue:1 |
op_relation |
https://doi.org/10.1080/22423982.2024.2383023 https://pubmed.ncbi.nlm.nih.gov/39042812 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11268221/ |
op_doi |
https://doi.org/10.1080/22423982.2024.2383023 |
container_title |
International Journal of Circumpolar Health |
container_volume |
83 |
container_issue |
1 |
_version_ |
1810439374276395008 |