Barriers and preferences in advance care planning: a mixed-methods study of end-stage kidney disease patients and caregivers in India

Objectives: To understand preferences for illness-related information, decision-making roles, and barriers to Advance Care Planning (ACP) documentation among patients with End-stage Kidney Disease (ESKD) and their caregivers in India. Methods: A convergent parallel mixed-methods study was conducted from October 2022 to September 2023 at a tertiary care hospital in South India. Quantitative data were collected using a validated ACP questionnaire from 247 patient-caregiver dyads. Qualitative data were obtained from semi-structured interviews with 34 patients and 6 caregivers. Quantitative data were analyzed using descriptive and inferential statistics; qualitative data were analyzed thematically using Braun and Clarke’s framework. Results: Most patients (90.7%) and caregivers (94.1%) preferred detailed illness-related information, yet ACP documentation interest was low (20.4% dialysis, 9.2% non-dialysis patients). The majority preferred collaborative decision-making involving family and clinicians. Barriers to ACP included limited awareness, emotional burden, and systemic challenges. Enablers included family support and provider guidance. Conclusions: While interest in illness information and shared decision-making is high, ACP documentation remains limited. Tailored strategies are needed to promote ACP engagement. Practice implications: Integrating culturally sensitive ACP discussions into routine nephrology care and involving families can improve ACP participation.