Psychometric validation of the death literacy index and benchmarking of death literacy level in a representative uk population sample

Abstract

Background Death literacy includes the knowledge and skills that people need to gain access to, understand, and make informed choices about end of life and death care options. The Death Literacy Index (DLI) can be used to determine levels of death literacy across multiple contexts, including at a community/national level, and to evaluate the outcome of public health interventions. As the first measure of death literacy, the DLI has potential to significantly advance public health approaches to palliative care. The current study aimed to provide the first assessment of the psychometric properties of the DLI in the UK, alongside population-level benchmarks. Methods A large nationally representative sample of 399 participants, stratified by age, gender and ethnicity, were prospectively recruited via an online panel. The factor structure of the 29-item DLI was investigated using confirmatory factor analysis. Internal consistency of subscales was assessed alongside interpretability. Hypothesised associations with theoretically related/unrelated constructs were examined to assess convergent and discriminant validity. Descriptive statistics were used to provide scaled mean scores on the DLI. Results Confirmatory factor analysis supported the original higher-order 8 factor structure, with the best fitting model including one substituted item developed specifically for UK respondents. The subscales reported high internal consistency. Good convergent and discriminant validity was evidenced in relation to objective knowledge of the death system, death competency, actions relating to death and dying in the community and loneliness. Good known-groups validity was achieved with respondents with professional/lived experience of end-of-life care reporting higher levels of death literacy. There was little socio-demographic variability in DLI scores. Scaled population-level mean scores were near the mid-point of DLI subscale/total, with comparatively high levels of experiential knowledge and the ability to talk about death and dying. Conclusions Psychometric evaluations suggest the DLI is a reliable and valid measure of death literacy for use in the UK, with population level benchmarks suggesting the UK population could strengthen capacity in factual knowledge and accessing help. International validation of the DLI represents a significant advancement in outcome measurement for public health approaches to palliative care. Pre-registration https://osf.io/fwxkh/

Death anxiety and death literacy among Turkish adults with chronic illness: A Cross-Sectional Study

“…Understanding the concept of death and having relevant knowledge on the topic de nes one's level of death literacy [10,11]. Studies on death literacy, which is a new concept in the literature, are limited [14]. In a community study on death literacy in the United Kingdom, it was reported that the death literacy of the participants was close to the middle level [13,14].…”

“…Death literacy, which is a new concept in academia, is de ned as the knowledge and skills people need to access, understand, and make informed decisions about death and end-of-life care options [12]. However, studies on death literacy are limited [13,14]. Understanding death and learning the unknowns about death are especially important in improving the quality of life of patients with life-threatening chronic diseases [15].…”

Association of filial attitude, filial behavior and death literacy: implications for development of death system in Guangdong-Hong Kong-Macao Greater Bay Area of China

“…This measure is used to assess the knowledge and skills that enable people to gain access to, to understand, and to make informed choices about death and end-of-life care options. This notion serves as an index that can be used to predict the death quality of individuals as well as to reflect the overall quality of public health palliative care [ 33 ]. DLI is a 29-item scale comprising 4 subscales: ‘Practical Knowledge’ (8 items), ‘Experiential Knowledge’ (5 items), ‘Factual Knowledge’ (7 items) and ‘Community Knowledge’ (9 items).…”

Validation of a culturally adapted Swedish-language version of the Death Literacy Index

“…Total DL is calculated as a higher-order composite score, which is said to reflect overall capacity gained from previous experiences [ 6 ]. The proposed six-factor model in the original English-language DLI demonstrated satisfactory psychometric properties in Australia indicating good model fit overall (CFI = 0.955, TLI = 0.95, RMSEA = 0.049), and high reliability of the scales and sub-scales (Cronbach’s α ranging 0.82 to 0.95) [ 2 ], and the United Kingdom (CFI = 0.94, RMSEA = 0.07, SRMR = 0.07; Cronbach’s α for sub-scales ranging 0.76 to 0.93) [ 7 ]. Moreover, translated DLI versions have demonstrated acceptable reliability and validity in Turkey (total CVI = 0.91; CFI = 0.93, RMSEA = 0.053; Cronbach’s α ranging 0.68–0.90) [ 8 ] and China (CFI = 0.956, RMSEA = 0.055, SRMR = 0.051, Cronbach’s α for sub-scales ranging 0.76–0.97) [ 9 ].…”

“…As such, the DLI may constitute a promising tool for appraising impact of health promoting activities in relation to EOL issues. To date, the DLI has primarily been used among adults in the Australian general public, although the questionnaire has garnered increasing interest internationally, and been validated in the United Kingdom [ 7 ], Turkey [ 8 ], and China [ 9 ]. However, the extent to which DL and its operationalization are comparable across cultures is unknown.…”