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The Death Literacy Index:

Testing the Death System Literacy of Unpaid Carers of Palliative Patients

Published Date: 1.2.2025

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Theme: Planning and transitions

Sub-theme: Planning for the future

Palliative care Carer support Carer wellbeing Grief

Verification Statement

This publication / resource is hosted on a publicly available external link. If the full text is not publicly accessible, summary points are included and a contact method for the author(s) is provided, where available.

The summary information presented is based on content submitted by an author or other user
, along with publicly available information about the publication / resource added by the Carer Knowledge Exchange team.

All content is reviewed, edited and approved by the Carer Knowledge Exchange team, in line with our Submission Guidelines.


To report an issue or request a change, please complete our Feedback Form.

 

Theme: Planning and transitions

Sub-theme: Planning for the future

View Publication Palliative care Carer support Carer wellbeing Grief

Verification Statement

This publication / resource is hosted on a publicly available external link. If the full text is not publicly accessible, summary points are included and a contact method for the author(s) is provided, where available.

The summary information presented is based on content submitted by an author or other user
, along with publicly available information about the publication / resource added by the Carer Knowledge Exchange team.

All content is reviewed, edited and approved by the Carer Knowledge Exchange team, in line with our Submission Guidelines.


To report an issue or request a change, please complete our Feedback Form.

 

The Death Literacy Index:

Testing the Death System Literacy of Unpaid Carers of Palliative Patients

Published Date: 1.2.2025

  • Author/ Authors

    Kristine Van Dinther , Kerrie Noonan, Rosemary Leonard , Sara Javanparast

  • Suggested citation (APA 7th edition)

    Van Dinther, K., Noonan, K., Leonard, R., & Javanparast, S. (2025). The Death Literacy Index: Testing the death system literacy of unpaid carers of palliative patients. OMEGA - Journal of Death and Dying. https://doi.org/10.1177/00302228251319478

Long Summary

This study emphasises the value of experiential knowledge among grieving carers. While they demonstrate high death literacy, carers often struggle to engage with support networks. The study advocates for compassionate community networks where carers can share experiences and receive support, particularly after their loss. It suggests integrating these networks with healthcare through social prescribing, which would enhance death literacy and empower carers in end-of-life care.

    Key Messages for Carers


  • Seeking support from community networks can reduce stress and improve wellbeing. Engaging with peer groups and bereavement support can help navigate the challenges of end-of-life care.
  • Understanding palliative care services and death literacy can improve decision-making and self-care

  • Key Messages for Policy Makers


  • End-of-life care decisions are deeply influenced by cultural beliefs. Policy must ensure culturally appropriate support and tailored resources and services.
  • Unpaid carers, especially those supporting end-of-life care, need improved access to support networks. Policy should promote compassionate community models and social prescribing to better integrate carer support within the healthcare system.

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The Carer Knowledge Exchange is led by Carers NSW and proudly funded by the NSW Government. It was established as a partnership between Carers NSW and the Institute for Public Policy and Governance (IPPG) at the University of Technology Sydney from 2021-2024. We acknowledge Aboriginal and Torres Strait Islander peoples as the First Australians and Traditional Custodians of the lands where we live, learn and work.