People in Donegal are being invited take part in a death literacy survey.
The PhD research study is being completed by Stephanie Crawford at Queen’s University Belfast in collaboration with the All Ireland Institute of Hospice and Palliative Care.
‘Death literacy’ is the knowledge and skills that people need to access, understand and make decisions about death and dying.
Ms Crawford said there is a need to measure ‘death literacy’ on the island of Ireland so that individuals and communities have the end of life they want and deserve.
“Death is an individual experience. Individuals differ in how they wish to be cared for at the end of their life or after. Some people would like to die at home, some don’t want to be resuscitated in certain circumstances, and some have particular wishes for their funeral. However, the fact is that many individuals on the island of Ireland do not know how to make these wishes a reality.”
A tool has been adapted to measure the death literacy of people on the island of Ireland, but it needs the help of the public who are being asked to complete a 15-20 minute online survey.
“As the population continues to age, the prevalence of life limiting conditions increases and health care services are pushed to their limits, the island of Ireland is aiming to increase the populations knowledge and skills towards death, dying and loss (aka death literacy) so that individuals may live their longer lives healthily and die in a dignified and wanted manner,” said Ms Crawford.
“We are seeing an increasing amount of encouragement for individuals to think about their end-of-life care wishes and create advance care plans. However, the problem is that we currently lack a clear understanding of what death literacy looks like on the island. Without this knowledge, it is challenging to know whether the public are being supported to make such decisions and whether policies such as the recently launched 2024 adult palliative care policy (the first in almost 20 years) and public health initiatives, such as compassionate communities, are addressing the correct issues within the right communities.
“This study will validate the death literacy index, which will be the first tool of its kind on the island of Ireland that will help us overcome these challenges. Through the study we will validate the tool, investigate what the death literacy of the island currently looks like and calculate average levels of death literacy across the entire Ireland. The result of this study is therefore of interest to national organisations and policy makers across the island.”
Anyone over the age of 18, proficient in English, living in the Republic of Ireland or in Northern Ireland is eligible to take part in the survey.
The survey can be found via: https://qubpsych.eu.qualtrics.com/jfe/form/SV_7arjfrmgPbPAze6
Participation in the study is entirely anonymous and voluntary.
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