Navigating end-of-life decision making: a thematic analysis of Uchinanchu American older adult’s information behaviour

Abstract

Introduction. End-of-life (EOL) involves complex decision-making, influenced by how individuals seek, share, and process information. This study examines the EOL decision-making information behavior of older Uchinanchu (Okinawan) Americans, an underrepresented ethnic minority.

Method. Qualitative, in-depth, semi-structured interviews were conducted with 18 Uchinanchu older adult participants to explore their information behavior in EOL decision-making.

Analysis. Reflexive thematic analysis, three key themes: (1) Prioritizing Family Well-being at EOL, where participants sought and shared information focused on minimizing burdens for adult children; (2) Keeping Cultural EOL Decision-making Customs, reflecting information exchange centred on filial responsibility; and (3) Navigating Fate when Making and Communication EOL Decisions, shaped by the concept of ‘Shoganai’ (acceptance of fate).

Results. Participants information behavior revealed a nuanced balance between actively seeking information for decision-making and deferring to cultural norms or family guidance. The interplay between cultural values and EOL decisions influenced how information was gathered, shared, and applied within families.

Conclusions. These findings show that EOL information behavior is deeply shaped by cultural values and family dynamics, particularly in balancing individual preferences with collective responsibilities. Future research should examine how underrepresented populations engage in health-related information practices related to promote inclusivity in end-of-life healthcare practices and policies.