Invisible inequities in type I diabetes care in India: A multi-stakeholder qualitative study from Karnataka

Abstract

Type 1 Diabetes mellitus (T1DM) affects a substantial population in India, with significant challenges related to healthcare access and financial burden. This study aims to explore the multi-level barriers and enablers of T1DM care in Karnataka state, providing evidence-based recommendations for policymakers to improve healthcare services. This qualitative study employed in-depth interviews (IDIs) and focus group discussion (FGDs) with multiple stakeholders, including ten People with Type-1 Diabetes Mellitus (PwT1DM) aged 5–23 years and their caregivers, 13 Healthcare providers (HCPs) -Endocrinologists, paediatricians, diabetes educators, and primary care physicians; and ten senior health officials and six Policymakers. Participants were selected using purposive sampling from both urban and rural settings across Karnataka. Data was collected over six months, and qualitative research software was used to analyse the transcribed data thematically. The study was approved by the Institutional Ethical Committee of M.S. Ramaiah Medical College. Significant obstacles include inadequate integration of policies within India’s national framework, erratic insulin availability, substantial out-of-pocket costs, and insufficient training for healthcare providers. Rural demographics face compounded disadvantages due to poor healthcare infrastructure, while caregivers, especially mothers, struggle with financial and emotional burdens; People with TIDM endure social stigma and mental health issues, particularly affecting females. The study highlights the critical need for formulating dedicated T1DM policies within the framework of the existing NonCommunicable Disease program. Implementation of subsidized insulin schemes and expansion of primary care services, along with a multi-sectoral strategy, encompassing enhanced training for HCPs, integration of digital health solutions, and development of community-based support systems, is essential for effective and sustainable T1DM management. Addressing financial and gender-based disparities is crucial to ensure equitable care in both urban and rural areas.