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Exploring the death literacy of the island of Ireland

Research Project Title

A Validation and Benchmark Study of the Death Literacy Index-Island of Ireland (DLI-IRE)

KeyWords

Death literacy, Death Literacy Index (DLI), death, dying, bereavement, grief, end-of-life care, palliative care, community, compassionate communities

Challenge

Death literacy is the knowledge and skills that individuals need for them to access, understand and make confident decisions regarding end-of-life care and death options. The demands of the ageing population, lack of end-of-life care knowledge, presence of wrongful beliefs about palliative care and stigmas that exist towards death and dying has led death literacy to become a rising topic of interest on the island of Ireland. This rising interest is seen in key palliative and end-of-life care organisations across the island such as Marie Curie and the Irish Hospice Foundation who have recommended death literacy to be increased across the island. In order to know what the death literacy of the island of Ireland looks like, it must be measured. Researchers in Australia have created a tool that can measure death literacy, the Death Literacy Index (DLI). However, it is not known whether the Death Literacy Index is appropriate for use on the island of Ireland.

Research Project aims and methods

Stephanie continues her research where she previously investigated the appropriateness of the Death Literacy Index to the island of Ireland. During this study, changes were made to the original Death Literacy Index and an amended version, the Death Literacy Index-Island of Ireland (DLI-IRE) was developed for use on the island of Ireland.

The current study will now validate the Death Literacy Index-Island of Ireland (DLI-IRE) and measure death literacy across the island of Ireland. Therefore, the study seeks a sample of 420 individuals across the island of Ireland to complete an online survey lasting approximately 15-20 minutes. This research could provide the island of Ireland with the first standardised method of assessing death literacy.

Public, patient and personal involvement (PPI)

There is a public, patient and personal involvement (PPI) group involved in this study. PPI members were involved with the creation of research materials for the study such as participant information sheets, consent forms, debrief sheets and the online survey. PPI members were also consulted on how to best recruit participants for the study. Furthermore, when the results of the study are gathered, they will be analysed with the PPI group.

Timeline

November 2024-March 2025

Research Team

  • Stephanie Crawford, Queen’s University Belfast
  • Dr Lisa Graham-Wisener, Queen’s University Belfast
  • Professor Martin Dempster, Queen’s University Belfast
  • Dr Jenny Groarke, University of Galway

Collaborators

All Ireland Institute of Hospice and Palliative Care

Funding & Support

The PhD student is funded by the Department for the Economy Collaborative Award in Science and Technology (DfE CAST).

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