IntJCircumpolarHealth. 2024Dec;83(1):2383023. doi:10.1080/22423982.2024.2383023.Epub 2024 Jul 23.

Silvia Isidor ¹, Ninna Senftleber ^2 3, Cecilie Schnoor ^2 3, Kristine Skoett Pedersen ^2 3, Lene Seibæk ^1 4 5, Marit Eika Jørgensen ^1 2 3 4, Jette Marcussen ^1 4 6 7

Author information

¹Ilisimatusarfik, University of Greenland, Institute of Health and Nature, Nuuk, Greenland.

²Steno Diabetes Center Copenhagen, Copenhagen, Denmark.

³Steno Diabetes Center Greenland, Nuuk, Greenland.

⁴Greenland Center for Health Research, Institute of Health and Nature, University of Greenland, Nuuk, Greenland.

⁵Department of Obstetrics and Gynaecology, Aarhus University Hospital, Aarhus, Denmark.

⁶Department of Health, University of Southern Denmark, Institute of Clinical Research, OPEN, Odense, Denmark.

⁷Department of Dermatology, Zealand University Hospital, Roskilde, Denmark.

Abstract

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.