Developing a death literacy index

Leonard, Rosemary; Noonan, Kerrie; Horsfall, Debbie; Kelly, Marguerite; Rosenberg, John P.; Grindrod, Andrea; Rumbold, Bruce; Rahn, Alison

doi:10.1080/07481187.2021.1894268

Cited by 26 publications

(62 citation statements)

References 23 publications

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“…Measures included the Death Literacy Index (DLI; [ 13 ]) alongside several measures to assess construct validity. Death literacy was expected to be positively associated with death competency, with the Coping with Death Scale [ 14 ] included to assess convergent validity, alongside items to assess i) objective knowledge and ii) actions regarding discussion of death and dying.…”

Section: Methodsmentioning

confidence: 99%

“…One identified challenge to evaluating community-based initiatives is the lack of an outcome measure which meaningfully captures the multi-dimensional impact of ‘Compassionate Communities’ intervention [ 12 ]. Existing tools largely measure individual constructs such as clinical concerns or knowledge, and do not include a focus on community support [ 13 ].…”

Section: Introductionmentioning

confidence: 99%

“…The recently developed Death Literacy Index (DLI; [ 13 ]) addresses this important gap. This is a 29-item measure designed to assess levels of death literacy across multiple contexts, including at a community/national level, and to evaluate the outcome of public health interventions.…”

Section: Introductionmentioning

confidence: 99%

“…The development of the DLI was informed by an existing theoretical conceptualisation of death literacy [ 11 ] and relevant measures, and was refined with input from professionals with experience in the EoLC sector. The measure has previously been validated by the original authors [ 10 , 13 ] who administered the measure to 1200 participants from the general population in Australia, with analysis involving exploratory and confirmatory factor analyses. This confirmed a structure with four subscales, two of which have two subscales.…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2022

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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/

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

et al. 2022

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“…37 Impact on individual and group development relates to health promotion efforts to develop personal skills 37 and may also be understood as a form of gaining death literacy. 38 Action-oriented impact relates to strengthening community action in health promotion. 37 Strategy-oriented impact relates to the Ottawa Charter’s systemic goals of building healthy public policy, creating supportive environments and reorienting health services.…”

Section: Discussionmentioning

confidence: 99%

Conceptualizing impact in community-based participatory action research to engage communities in end-of-life issues

et al. 2022

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Background: A health promotion approach to end-of-life (EoL) care is gaining traction internationally. However, there is a lack of evaluations of the impact of this approach, particularly regarding community-based initiatives. Conceptualizations of impact in participatory action research (PAR) may contribute to understanding ways in which impact can be investigated in community-based health promotion approaches to EoL issues. We aim to investigate impact and the process of impact development in our community-based PAR project, Studio DöBra, a Swedish health promotion initiative to engage communities in EoL issues. Methods: We do this through a qualitative framework analysis expanding on Banks et al.’s theory of co-impact in PAR, based on longitudinal empirical data of Studio DöBra. Studio DöBra was developed in partnership with a range of community organizations and engaged children (9 years old) and older adults (most 80+) with topics related to dying, death, and loss through arts activities. The analyzed empirical data reflect the perspectives of community-partners and academic partners from interviews and meetings spanning 4.5 years. Findings: We present a model of impact development consisting of impact on individual and group development, action-oriented impact, and strategy-oriented impact; ways they relate to and evolve from one another; and how they may be affected by contextual influences. Conclusion: Besides contributing to conceptualizations of impact in PAR, findings contribute a community perspective to the limited literature investigating the impact of health promotion initiatives related to EoL issues.

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Factors associated with death literacy among Swedish adults: A cross-sectional exploratory study

et al. 2023

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Objectives Death literacy is a recent conceptualization representing both individual and community competence, for example, a set of knowledge and skills for engaging in end-of-life-related situations. Little is yet known about which factors are associated with death literacy. A cross-sectional survey using the Swedish version of the Death Literacy Index, the DLI-S, was therefore conducted to explore associations between death literacy and sociodemographic, health, and experience variables. Methods A quota sample of 503 adults (mean age 49.95 ± 17.92), recruited from an online Swedish survey panel, completed a survey comprising the DLI-S and background questions. Results A hierarchical regression model with 3 blocks explained 40.5% of the variance in death literacy, F(22, 477) = 14.75. The sociodemographic factors age, gender, education, widowhood, and religious/spiritual belief accounted for 13.7% of the variance. Adding professional care factors contributed to an additional 15.8% of variance, with working in health care being significantly associated with death literacy. Including experiential factors explained another 11.0% of the variance, of which experiences of caring for and supporting dying and grieving people, both in a work, volunteer, or personal context, were positively associated with death literacy. Significance of results This study contributes a tentative explanatory model of the influence of different factors on death literacy, outlining both direct and indirect associations. Our findings also support the hypothesized experiential basis for death literacy development in the Swedish context. The moderate degree of overall variance explained suggests there may be additional factors to consider to better understand the death literacy construct and how its development may be supported.

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Developing a death literacy index

Cited by 26 publications

References 23 publications

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

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

Conceptualizing impact in community-based participatory action research to engage communities in end-of-life issues

Factors associated with death literacy among Swedish adults: A cross-sectional exploratory study

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