What is the Death Literacy Index?
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 at a community or national level, and to evaluate the outcome of public health interventions.
The DLI provides a means to measure and research public health palliative care initiatives and has potential to significantly advance palliative care.
How can we use the Death Literacy Index?
Through tracking the DLI before and after interventions, it can be used to help monitor the impact of interventions within particular groups, organisations, or communities. It can also be used for making comparisons across groups, organisations, regions, or nations. This can contribute to knowledge and tracking of strategies and interventions in the end-of-life (EOL) field.
How is DLI research conducted?
The Death Literacy Index (DLI) is a 29-question survey that can be used to measure a
group or community’s death literacy. The index consists of four scales of measurement:
Hands on support: People’s ability to be hands on when caring for the dying.
Talking support: People’s ability to talk about death and dying.
What people have learnt from their previous experience of grief and loss.
Knowledge of the systems they might need to navigate when preparing for an imminent death.
Accessing help: People’s ability to access support.
Community support groups: People’s knowledge of support groups in their community.
How is Death Literacy scored and benchmarked?
The first DLI was conducted by Western Sydney University and a further UK-based benchmarking study was undertaken by Queens University, Belfast. Average scores for any given community group or neighbourhood can then be compared to the Australian averages to see if death literacy is higher or lower. More information can be found in this Death Literacy Index Community User Guide.
Case Study: Dorthy House Hospice Care
In October 2022 Turquoise Thinking conducted the UK’s first DLI survey (to be commissioned by a charity) on behalf of Dorothy House Hospice Care, who cover the regions of Bath and North-East Somerset.
Total survey sample: 796
- 776 out of 796 responses were completed via an anonymous online survey
- 250 via a commercial panel
- 503 through Dorothy House’s email newsletter
- 23 via Dorothy House’s physical newsletter
- A boosted sample of 20 responses were completed face-to-face to ensure a minimum representation of >50 in each target neighbourhood.
Sample Profile & Survey Structure
To ensure that the results were as representative of the area as possible, a weighting was applied to results based on gender, age and neighbourhood.
The survey was divided into three core elements: variables used to calculate the DLI, an attitudes and actions scale to give an indication of where interventions might be effective in a particular community, and demographic and social variables.
Outcome of the research
Turquoise concluded that where there was no known link with the Hospice, death literacy levels were in-line with the UK Validation Survey. Factual Knowledge and Accessing Help scored comparatively higher in the region, however Practical Knowledge and Talking Support scored comparatively lower. Young men had significantly lower death literacy which was attributed to avoiding talking about the subject of death, dying and grieving.
We found that Community activities are correlated strongly with death literacy, especially where there is opportunity to tap into the knowledge of others who have been through end-of-life experiences.
In terms of neighbourhoods, we were able to compare the DLI across multiple regions to highlight specific areas of need and gaps in experiential, factual, practical or community knowledge.
The potential of the DLI for charities and hospices
As a result of our fieldwork and analysis on the first UK study of this nature, we are happy to recommend the DLI as a reliable and valid measure of death literacy in the UK. We believe that armed with this information, many hospices and charities supporting individuals and communities in any aspect of end-of-life care, would benefit from a deeper understanding of where their community sits on this scale.
Those working alongside a community either via an educational approach or some form of community development, can use the DLI to inform decision-making and to measure whether interventions are having the desired impact. By repeating the survey on a regular basis, it might be useful for some projects that need to show outcomes over time.
With over thirty-five years of market research experience supporting the charities sector, we are optimistic about the potential of this new tool. The Death Literacy Index certainly has a lot of potential to help educate and inform any organisation invested in improving palliative care initiatives.