An electronic copy of the proposal is available through UT Box at: https://utexas.box.com/s/zf63n8wpgkl2okof4x97ubiiellw9pi0. The title and abstract are below.

Title: End-of-life Decision Making: Information Preferences and Behaviors of Uchinanchu Older Adults

Abstract: End-of-life (EOL) decisions are unique and sensitive health decisions that require nuanced health information. Careful examination of EOL decision-making preferences and behaviors from both medical and cultural information perspectives is increasingly necessary as the national and global population grows older and more diverse. While information preferences and behaviors have been examined and represented within the health science literature, there is a glaring paucity of EOL decision-making research coming from information science scholars. My dissertation research will address this staggering gap.

This qualitative study employs semi-structured interviews of 18 Uchinanchu older adults. To better understand the EOL decision making information preferences and behaviors of Uchinanchu older adults I proposed three research questions: (RQ1) What information do Uchinanchu older adults want to have when making EOL decisions?; (RQ2) From what sources do Uchinanchu older adults draw on for the medical/and or cultural information they want when making EOL decisions?; and (RQ3) What factors influence Uchinanchu older adults’ information-seeking behavior in EOL decision making? Through reflexive thematic analysis, I identified that Uchinanchu older adults are making EOL decisions in two worlds: (1) a larger, dominant world encompassing Western (U.S.) medical, legal, and cultural systems; and (2) a smaller, Uchinanchu small world encompassing unique Uchinanchu culture. These two worlds became my two main themes and I use them to organize my results. Within each theme, features of information behavior (information types, information sources, and motivating factors of information behavior) are identified and discussed. Results of this dissertation research contribute to the development of an in-depth, culturally informed understanding of EOL decision-making information preferences and behaviors within the information science literature. Additionally, this work has practical implications for community health leaders and policy makers to design culturally informed programs for EOL decision making within underrepresented communities.

Committee: Bo Xie (Chair), R. David Lankes, Yan Zhang, Karen Fingerman (Human Development and Family Sciences, UT-Austin)