"My heart burns" - A qualitative study of perceptions and experiences of type 1 diabetes among children and youths in 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.
1 Department of Community Medicine and Global Health, Faculty of Medicine, Institute of Health and Society, University of Oslo, Oslo, Norway.
Severina
S
Haugvik
2 Division of Tropical and Humanitarian Medicine, Faculty of Medicine, University of Geneva and University of Geneva Hospitals, Geneva, Switzerland.
David
D
Beran
3 Operation Mercy Tajikistan, Dushanbe, Tajikistan.
Pamela
P
Klassen
1 Department of Community Medicine and Global Health, Faculty of Medicine, Institute of Health and Society, University of Oslo, Oslo, Norway.
Akhtar
A
Hussain
1 Department of Community Medicine and Global Health, Faculty of Medicine, Institute of Health and Society, University of Oslo, Oslo, Norway.
Ane
A
Haaland
D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D003922:Diabetes Mellitus, Type 1 / Q000523:psychology*; D000072097:Endocrinologists / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D010465:Perception; D011203:Poverty / Q000523:psychology*; D036301:Qualitative Research; D057545:Social Stigma; D013140:Spiritualism / Q000523:psychology; D013315:Stress, Psychological / Q000523:psychology*; D013620:Tajikistan; D055815:Young Adult
Type 1 diabetes; access to health care; low-income countries; qualitative methodology; quality of life