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Chronic Illn. 2017 Jun;13(2):128-139. doi: 10.1177/1742395316668566. Epub 2016 Sep 10.

"My heart burns" - A qualitative study of perceptions and experiences of type 1 diabetes among children and youths in Tajikistan.

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1 Department of Community Medicine and Global Health, Faculty of Medicine, Institute of Health and Society, University of Oslo, Oslo, Norway.
2 Division of Tropical and Humanitarian Medicine, Faculty of Medicine, University of Geneva and University of Geneva Hospitals, Geneva, Switzerland.
3 Operation Mercy Tajikistan, Dushanbe, Tajikistan.


Aims To explore and describe perceptions and experiences of living with type 1 Diabetes Mellitus among children/youths in Tajikistan. Methods Qualitative methods were employed. Participants were recruited through purposive and snowball samplings. Data were collected using a semi-structured interview guide with children/youths having diabetes, their parents as well as health professionals. Data were analyzed according to Malterud's systematic text condensation. Results Children/youths with diabetes (n = 18), their parents (n = 19) and endocrinologists (n = 4) were interviewed. Families described unique stories in which "emotional stress" and a spiritual "evil eye" were perceived as possible causes of diabetes. Life-threatening complications and maltreatment preceding diagnosis of diabetes were frequent. From manifestation of diabetes onwards, families struggled with systemic and cultural obstacles, causing stigma, discrimination, high school-drop-out rates, diabetic coma, chronic complications or death of the child/youth with diabetes. Conclusions Results of this qualitative study highlight the severity and complexity of challenges families living with a child/youth having diabetes in this low-income country face. Efforts to improve life expectancy and life quality are strongly needed and require addressing both systemic and cultural factors in order to accomplish sustainable impact.


Type 1 diabetes; access to health care; low-income countries; qualitative methodology; quality of life

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