UCLA

This study aimed to explore death literacy in a United States (U.S.) community using theDeath Literacy Index (DLI). The DLI has demonstrated good validity and reliability across multiple settings. However, it has not been used in the U.S. A conceptual model was developed based on General Systems Theory to guide the study. The aims of this study were 1) to obtain a benchmark DLI score and subscale scores for a U.S. community, 2) to examine variability in the DLI scores with demographic characteristics, EOL experience, and spiritual characteristics, and 3) to evaluate the psychometric properties of the DLI. Methods: Data were obtained from the Santa Clarita Valley, a suburban community in Los Angeles, using a cross-sectional research design. Inclusion criteria included living in one of nine identified zip codes, reading English, and being ³ 18 years old. The 43-item tool included demographics, five yes/no questions about experience with end-of-life (EOL) care and spiritual background/practice, and the 29-item DLI tool. Results: A sample of 367 was obtained. The DLI mean score was 4.87 (scaled 0 -10). The highest subscale score was in Support Groups (6.04), and the lowest was Doing Hands-On Care (3.75). Higher DLI scores were associated with older age, widowhood, having children, and Medicare insurance. Professional and personal experience with EOL care and spiritual background or practice were associated with higher death literacy. This study was the first to validate the DLI in the U.S. Known groups (those with EOL experience) had significantly higher DLI scores. An exploratory factor analysis confirmed the six-factor model. Confirmatory factor analysis using structural equation modeling confirmed the model with good fit statistics. The tool had a Cronbach’s alpha of 0.93. Conclusion: Experience in providing EOL care was associated with higher death literacy, confirming the conceptual framework. The study introduced a new health insurance variable. The data points to interventions for communities and healthcare providers. This study demonstrated that the DLI is a valid and reliable tool for measuring death literacy in the U.S.