Investigating the Appropriateness of the Death Literacy Index (DLI) to the Population of Ireland
Death literacy, Death Literacy Index (DLI), end-of-life care, palliative care, community
In the context of an aging population globally, demand for end-of-life care services is rising. Many public health approaches have tried to increase people’s knowledge about end-of-life care, and to help address the rising demand for services. However, no measure existed to see how well these public health approaches were working, until the Death Literacy Index was developed in Australia. To find out whether the Death Literacy Index is suitable to be used as a tool for evaluation and improvement of end-of-life care services and initiatives in Ireland, it is important to investigate how appropriate it is for populations here.
The aim of the study is to investigate the appropriateness of the Death Literacy Index (DLI) to the population of Northern Ireland and the Republic of Ireland. The DLI was originally developed and validated in Australia, and it has since been validated in the United Kingdom and Sweden. Due to the newness of the measure and possible cultural differences, it is vital to assess whether the DLI is understandable and appropriate to the population of Northern Ireland and the Republic of Ireland. In doing so, the study aims to assess whether the DLI can be utilised as a tool for evaluation and improvement of end-of-life care services and initiatives in Ireland.
To achieve the aims of this study, individuals are being invited to participate in an online interview with the PhD researcher (Stephanie Crawford). During this online interview, individuals will go through the DLI with the researcher, and provide feedback on the various items in the DLI to assess its relevance. Participants will be asked to ‘think-aloud’ whilst they undertake this task which simply means speaking aloud any thoughts or feelings during the interview.
This study is part of Stephanie Crawford’s PhD, ‘The All-Ireland Death Literacy Study: Empowering Communities to Provide End-of-Life Care’.
Taking part in the study: To participate in the study, you must be a resident of either Northern Ireland or the Republic of Ireland and over the age of 18 years old. Please click here for further information, and to take part.
PPI was not included in this study. This research study is the first study of a larger programme of research in which PPI will play a major role. Part of this current study recruits non health professionals and will seek their views surrounding the DLI.
The planning for the study began in January 2023. The aim is for the study to run from June to November 2023.
Stephanie Crawford, School of Psychology, Queens University Belfast
Dr Lisa Graham-Wisener, School of Psychology, Queens University Belfast
Professor Martin Dempster, School of Psychology, Queens University Belfast
Dr Jenny Groarke, School of Psychology, National University of Ireland Galway, Queens University Belfast (Honorary lecturer).
All Ireland Institute of Hospice and Palliative Care
Department for the Economy Collaborative Award in Science and Technology (DfE CAST)
Please see the various articles below relating to the original development and validation of the DLI and the United Kingdom validation study.
Noonan, K., Horsfall, D., Leonard, R., & Rosenberg, J. (2016). Developing death literacy. Progress in Palliative Care, 24(1), 31-35. https://doi.org/10.1080/09699260.2015.1103498
Leonard, R., Noonan, K., Horsfall, D., Kelly, M., Rosenberg, J.P., Grindrod, A., Rumbold., B., & Rahn, A. (2022). Developing a death literacy index, Death Studies, 46(9), 2110-2122, https://doi.org/10.1080/07481187.2021.1894268
Leonard, R., Noonan, K., Horsfall, D., Psychogios, H., Kelly, M., Rosenberg, J., Rumbold, B., Grindrod, A., Read, N., and Rahn, A. (2020). Death literacy index: A report on its development and implementation. Western Sydney University. https://doi. org/10.26183/5eb8d3adb20b0
Graham-Wisener, L., Toner, P., Leonard, R., & Groarke, J.M. (2022). Psychometric validation of the death literacy index and benchmarking of death literacy level in a representative uk population sample. BMC palliative care, 21(1), 1-15. https://doi.org/10.1186/s12904-022-01032-0
Principal Investigator: Dr Cathal Cadogan, School of Pharmacy and Pharmaceutical Sciences, Trinity College Dublin
Research Team: Prof Carmel Hughes, School of Pharmacy, Queen’s University Belfast, Dr Sarah McLean, St Vincent’s Private Hospital, Dublin, Ireland, Ms Melanie Murphy, School of Pharmacy and Biomolecular Sciences, Royal College of Surgeons in Ireland, Prof Kathleen Bennett, Division of Population Health Sciences, Royal College of Surgeons in Ireland