Lay perceptions and illness experiences of people with type 2 diabetes in Indonesia: a qualitative study

Background: Understanding perceptions and experiences of people with diabetes is important before establishing effective interventions. Previous research indicates that socio-cultural characteristics influence people’s views about diabetes. Objective: This study aimed at understanding diabetes from the perspective of people with diabetes in the Indonesian cultural context. Methods: Six focus group discussions involving 45 people with diabetes were conducted in East Nusa Tenggara and West Sumatera. The discussions were recorded, transcribed verbatim in their original language, translated into English, and analysed for common themes. Results: This study showed that participants tried to understand diabetes based on their personal experiences. They also saw the disease in a broader context of cultural identity and changes in their cultural environment. In coping with the disease, three strategies were identified: seeing it as beyond their control, normalising their condition, and resignation to God. People who used the first and second methods of coping tended to have a more negative response to diabetes treatment. People with strong religious beliefs coped more positively with diabetes. Conclusions: People with diabetes conceptualised the disease into their own narratives. These lay concepts influenced their strategies of coping and their behaviours in managing the disease. Understanding people’s lay perceptions and experiences are important to develop personalised strategies of diabetes management that may influence people’s responses to their disease and treatment.