Navigating health systems for burn care: Patient journeys and delays in Uttar Pradesh, India.

Background: India has one of the highest burden of burns. The health systems response to burn care is sometimes patchy and highly influenced by social determinants. Delay in access to acute care and rehabilitation adversely affects recovery outcomes. Evidence on underlying factors for delays in care are limited. In this study, we aim to explore patients' journeys to analyse their experiences in accessing burn care in Uttar Pradesh, India.

Methods: We conducted qualitative inquiry using the patient journey mapping approach and in-depth interviews (IDI). We purposively selected a referral burn centre in Uttar Pradesh, India and included a diverse group of patients. A chronological plot of the patient's journey was drawn and confirmed with respondents at the end of the interview. A detailed patient journey map was drawn for each patient based on interview transcripts and notes. Further analysis was done in NVivo 12 using a combination of inductive and deductive coding. Similar codes were categorised into sub-themes, which were distributed to one of the major themes of the 'three delays' framework.

Results: Six major burns patients (4 female and 2 males) aged between 2 and 43 years were included in the study. Two patients had flame burns, and one had chemical, electric, hot liquid, and blast injury, respectively. Delay in seeking care (delay 1) was less common for acute care but was a concern for rehabilitation. Accessibility and availability of services, costs of care and lack of financial support influenced delay (1) for rehabilitation. Delay in reaching an appropriate facility (delay 2) was common due to multiple referrals before reaching an appropriate burn facility. Lack of clarity on referral systems and proper triaging influenced this delay. Delay in getting adequate care (delay 3) was mainly due to inadequate infrastructure at various levels of health facilities, shortage of skilled health providers, and high costs of care. COVID-19-related protocols and restrictions influenced all three delays.

Conclusions: Burn care pathways are adversely affected by barriers to timely access. We propose using the modified 3-delays framework to analyse delays in burns care. There is a need to strengthen referral linkage systems, ensure financial risk protection, and integrate burn care at all levels of health care delivery systems.