Children with Type 1 Diabetes in Tajikistan : A qualitative study assessing perceptions of type 1 diabetes and the need for information and education among affected families in Tajikistan

Introduction: Type 1 diabetes (T1DM) is among the most common chronic childhood illnesses. Broad knowledge on complex daily management regimens including insulin injections, blood glucose monitoring, regular carbohydrate containing meals and exercise are required, to achieve normal growth and development, to prevent complications, and to promote and sustain optimal functioning for the child. If untreated, severe fluid, electrolyte and acid-base disturbances lead to dehydration, coma and death within a week. Accordingly, patient education is essential and needs to be addressed if T1DM is to be tackled, especially in developing countries. Aim: The aim of this study was to assess children's and parents' perceptions of T1DM and their need for information and education in Tajikistan. Study design: Qualitative. Methods: In-depth interviews with-, and focused observation of 18 diabetic children/adolescents (¡Ü18yrs: n=15; ¡Ý18yrs: n=3; age variation: 3-23yrs, duration of disease: 20d- 14yrs), their parents and endocrinologists (n=4) provided qualitative data from three out of four regions in Tajikistan (Region of Republican Subordination, Khatlon Region, Sughd Region). Purposive- and snowball sampling were used. One focus group discussion with diabetic children and descriptive observation from three diabetes days were used to triangulate the data provided in the interviews. Data was analyzed according to Malterud¡¯s systematic text condensation. Findings: From discussions and observations three pertinent themes were identified: (1) Finding out the child has diabetes, (2) Life with T1DM (Responses related to (a) emotions, (b) biomedical knowledge and (c) the health system) and (3) I would like to know more about/ I would suggest. (1) Emotional stress and the "evil eye" were perceived to cause T1DM. Most families had no knowledge about T1DM prior to diagnosis and medical personnel lacked awareness that diabetes could occur in children. Almost all children were severely sick at diagnosis and 11 out of 18 children had been in a coma at least once from diagnosis and onwards. (2)(a) Responses related to emotions were characterized by an ambiguous relationship between living with a chronic illness in reality and the uncertainty whether there was a cure that was yet unknown to them. Families experienced chronic sorrow, where coping was felt as an ongoing and spiral process by parents, whereas diabetic children struggled emotionally and showed few adaptive coping strategies. Mocking and stigmatization, due to impaired growth and delayed pubertal development generated inordinate stress, where 8 of 16 school-aged children stopped attending school. (b) Responses related to biomedical knowledge included diet, where sweets, bread and "oily food" were perceived as the worst foods for diabetic children. Only a few used glucometers as they believed to sense their blood glucose level. Further they were not able to read the English instructions and could not afford the expenses. Insulin injections were frequently left out as mothers had compassion and did not want to hurt their child. All children had experiences with hyperglycemia, but few were aware of its causality and long-term complications. Symptoms of hypoglycemia were not easily recognized. (c) Responses related to the health system were that families experienced insulin procurement as a main challenge. In addition, unofficial private payments often hindered families to seek professional help. (3) Diabetic children, their parents and medical doctors desired more written information targeting children with T1DM in Tajikistan. Further the value of diabetes camps was emphasized. Conclusions: In conclusion, this study has shown that 90 years after insulin saved the life of the first diabetic child, where the uniformly fatal disorder became a chronic illness with potential long-term survival, not much has changed for children with T1DM in Tajikistan. In this study it was found that little was known about T1DM and its treatment and that the health system had limited capacity to meet the needs of diabetic children in Tajikistan. With a globally estimated rise in incidence of T1DM, advocacy and allocation of financial resources are essential to improve diabetes care in resource constrained countries, so that children with T1DM can be empowered, preserve life quality and emotional health, and have a prolonged life expectancy