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

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


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.

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

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Child
  • Child, Preschool
  • Diabetes Mellitus, Type 1 / psychology*
  • Endocrinologists / psychology*
  • Female
  • Humans
  • Male
  • Middle Aged
  • Parents / psychology*
  • Perception
  • Poverty / psychology*
  • Qualitative Research
  • Social Stigma
  • Spiritualism / psychology
  • Stress, Psychological / psychology*
  • Tajikistan
  • Young Adult