Development and validation of a culturally relevant tool for advance care planning in India

Advance care planning (ACP) enables individuals to communicate their values, goals, and preferences for future healthcare. Despite evidence supporting its benefits, ACP uptake in India remains limited due to cultural norms favouring family-centred decision-making, low public awareness, and a lack of culturally relevant educational tools. This study aimed to develop and validate a culturally relevant ACP educational tool for the Indian community.

A structured mixed-methods study was conducted in 3 phases. Phase 1 involved the development of an ACP educational booklet using culturally appropriate language and visual aids. Phase 2 comprised validation by a multidisciplinary panel of 10 ACP experts using the Patient Education Materials Assessment Tool (PEMAT) to assess understandability and actionability, supplemented by qualitative feedback. Phase 3 involved community validation by 16 educated urban community participants using the same assessment framework. Quantitative data were analysed descriptively. Qualitative feedback was analysed thematically to help refine the booklet.

ACP experts reported high overall scores for understandability (95%) and actionability (100%). The educated urban community participants also reported high scores, with understandability at 91.4% and actionability at 93.7%. Qualitative feedback highlighted clarity and cultural relevance as key strengths. Suggestions regarding simplification, length reduction, and clearer next steps were incorporated into the final version.

This study presents a systematically developed and validated educational ACP booklet tailored for the Indian community. The tool demonstrates high understandability and actionability, and holds promise for improving public awareness and engagement with ACP. It contributes to the broader goal of advancing patient-centred care in culturally diverse populations.