Background: A metropolitan Local Health District (LHD) commissioned a research study to understand the experience of people bereaved following a death in the LHD, with focus on informing service improvement.

Aim: To understand the experience of people bereaved in the LHD, including the influence of care and communication pre-death, Advance Care Planning, Trauma Informed Care, and experience of bereavement supports.

Methods:  The multi method protocol comprised an online survey and qualitative interviews. The survey was designed by a multidisciplinary team (MDT), including consumer co-investigator. Invitations were mailed to the Next of Kin of adult patients who died in the LHD in the preceding 2-15 months. On completion of the survey online, participants could enter contact details offering to undertake an interview. Interviews were recorded and transcribed. A thematic analysis approach was employed. Transcripts were analysed by two investigators, using NVivo software, with the coding approach reviewed by the MDT. Survey results were analysed using descriptive statistics.


Results: Among other findings, of interest were the information needs expressed by bereaved people. These needs incorporated both pre and post death considerations. While only 18% of people reported having had a pre-death discussion regarding grief, of those 86% reported having found the discussion helpful. Interviews elicited a range of responses regarding information needs, including knowledge of the dying process, the practical tasks of early bereavement, grief and available supports. Participants shared ways these information needs were met through the shared experiences of friends and family, their own previous bereavement experiences, and from healthcare professionals. Often informal networks provided information that was not offered by healthcare professionals.


Conclusions: Findings highlight the need for systems to ensure consistent provision of information pre-death and in early bereavement. This study is guides the development of policy, bereavement resources and staff education.