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

Lisa Graham-Wisener, Paul Toner, Rosemary Leonard, Jenny M. Groarke

    Research output: Contribution to a Journal (Peer & Non Peer)Articlepeer-review

    15 Citations (Scopus)

    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/.

    Original languageEnglish
    Article number145
    JournalBMC Palliative Care
    Volume21
    Issue number1
    DOIs
    Publication statusPublished - Dec 2022

    Keywords

    • Carers
    • Community development
    • Death education
    • Death literacy
    • Death literacy index
    • End of life care
    • Palliative care
    • Public health
    • UK
    • Validation

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