Living with type 1 diabetes: Diabetic children’s experiences and perceptions

Pages: 228-233
Neelima Chopra and Bindiya Narang (Centre for Early Childhood Development and Research, Jamia Millia Islamia, New Delhi)

Research studies on health and disease have been recurrently inclined towards demographic and medical perspectives. Lately the importance of ’emic’ perspective has been realized in this field so as to understand from the viewpoints, perceptions and opinions of the concerned subjects. With the ‘new sociology of childhood’ emphasizing the agency of children, it is imperative to consider children’s acuity and listen to their assertions in the matters that affect their life and living. The foregoing paper derives its stance from an interpretative research with Type 1 Diabetic children and features their perceptions related to ongoing health condition and treatment seeking, the stressors encountered, impact on their daily activities as well as coping patterns. Thirty children, aged 6-12 years, seeking treatment in a public hospital setting were enrolled for the study with due consent from the guardians and after seeking assent from children themselves. To obtain relevant data, child friendly methods such as storytelling and personalized informal interviews were used and the narratives obtained were analyzed and interpreted thematically. The findings ascertained that children were aware of their condition and found it highly disturbing and stressful. The most cited problems were restricted diet, daily multiple insulin injections and associated pain, episodes of hypoglycemia, constant fatigue, incessant parental vigil and missed school. Besides, it was noted that incongruity with distressed care givers negatively impacted children’s own self esteem as well as treatment adherence. A repertoire of positive strategies such as learning to self administer insulin injections, maintaining self written journal of daily blood glucose levels, and self motivated observance of dietary and treatment regimen were also noted in a few children. The study purports engaging opportunities for diabetic children to express their views, integrating their perspectives in healthcare delivery and a deliberate strategy to assist them tide over their condition.