The Death Literacy Index: Testing the Death System Literacy of Unpaid Carers of Palliative Patients.

Abstract

Unpaid carers of palliative patients make a significant contribution to the health economy but are particularly vulnerable to burdens due to facing the prospect of death. Caring for a loved one at the end-of-life requires knowledge of the death system in which they operate to access both practical support networks and services and emotional support for themselves. We combined qualitative data from interviews and focus groups with survey data designed using the Death Literacy Index (DLI) for 18 unpaid carers of palliative patients in South Australia. Comparing the DLI with the lived experience of carers revealed factors affecting the manner in which carers talk, learn and share knowledge about death and dying. A compassionate communities' model is proposed to capitalise on the strengths and rectify the deficits which pose barriers to unpaid carers networks of support.