A qualitative study of perceptions of determinants of disease burden among young patients with type 1 diabetes and their parents in South India.

BACKGROUND: Diabetes is a leading threat to public health in India. A huge prevalence of type 1 diabetes among young patients is documented in literature; India is one of the countries with the highest number of new cases per year (10,900), of which 3-4 million face poverty along with diabetes.

OBJECTIVE: The aim of this study was to explore the perceptions of determinants of the disease burden among young patients with type 1 diabetes and their parents.

METHODS: In June 2014, perceptions were collected from eleven young patients and five available parents using the critical incident technique.

RESULTS: Disease burdens associated with the management of type 1 diabetes can vary significantly according to the different social and economic determinants facing each household. Determinants associated with good practices in the management of childhood type 1 diabetes included socioeconomic status, unawareness of health complications, and beliefs about nutrition. Coping strategies applied via lifestyle changes included monitoring glycemia and regular checkups by diabetologists. A general lack of awareness about type 1 diabetes in Indian society, stigmatization, and limited access and systematic barriers to the delivery of optimal health care were all perceived to be factors hindering the successful management of chronic type 1 diabetes by young patients and their parents.

CONCLUSION: Stigmatization, a lack of therapeutic adherence, and the financial strains placed on families, particularly on poor ones, are critical. More emphasis must be put on the prevention of acute and long-term complications and education.