Constraints faced by urban poor in managing diabetes care: patients’ perspectives from South India

BACKGROUND: Four out of five adults with diabetes live in low- and middle-income countries (LMIC). India has the second highest number of diabetes patients in the world. Despite a huge burden, diabetes care remains suboptimal. While patients (and families) play an important role in managing chronic conditions, there is a dearth of studies in LMIC and virtually none in India capturing perspectives and experiences of patients in regard to diabetes care. OBJECTIVE: The objective of this study was to better understand constraints faced by patients from urban slums in managing care for type 2 diabetes in India. DESIGN: We conducted in-depth interviews, using a phenomenological approach, with 16 type 2- diabetes patients from a poor urban neighbourhood in South India. These patients were selected with the help of four community health workers (CHWs) and were interviewed by two trained researchers exploring patients’ experiences of living with and seeking care for diabetes. The sampling followed the principle of saturation. Data were initially coded using the NVivo software. Emerging themes were periodically discussed among the researchers and were refined over time through an iterative process using a mind-mapping tool. RESULTS: Despite an abundance of healthcare facilities in the vicinity, diabetes patients faced several constraints in accessing healthcare such as financial hardship, negative attitudes and inadequate communication by healthcare providers and a fragmented healthcare service system offering inadequate care. Strongly defined gender-based family roles disadvantaged women by restricting their mobility and autonomy to access healthcare. The prevailing nuclear family structure and inter-generational conflicts limited support and care for elderly adults. CONCLUSIONS: There is a need to strengthen primary care services with a special focus on improving the availability and integration of health services for diabetes at the community level, enhancing patient centredness and continuity in delivery of care. Our findings also point to the need to provide social services in conjunction with health services aiming at improving status of women and elderly in families and society.