The purpose of this study is to examine experiences of the end of life in Australia today. We want to hear from people who are approaching the end of their life, and from their family and friends. We also want to speak to people who have been bereaved, so we can understand better this important part of life, from a range of different perspectives.

In the past few years, dying has had more attention (for example during the COVID-19 pandemic) but it is still relatively rare to hear the voices of people approaching the end of their life, or from their friends, family and communities. We hope that documenting people’s everyday experiences and thoughts about the end of life will help care providers to offer better support to people at the end of life and contribute to better public conversations about death and dying.

No. Participation is entirely voluntary. If you do not wish to take part, you are not obliged to. If you do agree to participate, you can withdraw at any time without comment or penalty.

Your decision whether to take part or not to take part, or to take part and then withdraw, will not affect your relationship with your healthcare team, The University of Sydney, or any other organisation involved in the research.

Before you make your decision, a member of the research team will be available to answer any questions you have about the research project. You can ask for any information you want. Sign the Consent form only after you have had a chance to ask your questions and have received satisfactory answers.

If you agree to take part, we will ask you to do a 30-60 minute interview with an experienced researcher, at a convenient time for you. Interviews will be held at a preferred site of your choice (e.g. your home, a local café, or a private space in a hospital) or via video-conference (e.g. Zoom). We are interested in such things as what your experiences, priorities and beliefs are at this point in your life; the support you have given and/or received; any challenges you are facing; the choices or decisions you are making; your thoughts about the future; how other people have responded to your situation.

We will audio record your interview(s). The recording can be stopped at any time you wish, and you can reword and change anything you say. You will be able to listen to the recording and if you wish, it can be deleted.

After you have done the interview, we may also ask you if you want to take part in other aspects of the study, for example, completing a diary of your day-to-day experiences or taking photographs of your day-to-day experiences. If you are interested in these parts of the project, we will give you more information and a separate consent form.

Yes. You may discontinue the interview(s), diary entries, photo collection, or withdraw from the study at any time with no repercussions for you, your family or your medical treatment. You can contact us to ask us to exclude your information from the results of the study, up until we submit the first academic publication for peer review.

Yes. All information that we collect from you through the course of the research project will be kept strictly confidential. Your name and any identifying information will be removed from your interview transcript. Any identifying information will be kept in a separate file, stored on a password protected server at The University of Sydney. Your interview and diary/photo files will be allocated a code, in place of any identifying information such as your name. Your identity will be kept private throughout the project and in all subsequent documentation and publications that are produced from the study.

No. You can decline to answer any of the questions we ask. We are interested in hearing your perspectives, as far as you are happy to tell us about them.

Participation in the study itself presents little risk. However, you may find reflecting on your experiences brings up difficult emotions for you. The interview may be paused or stopped at any time and counselling services will be offered where appropriate.

Although there is no intended direct benefit for participants, we believe that the results could potentially improve people’s experiences of the end of life and bereavement by improving the services they are offered and increasing public understanding of the experiences involved.

The results of this study will be published and/or presented in a variety of forums, including academic articles, policy reports, conferences as well as public forums such as an exhibition, website or podcast. In any publication and/or presentation, information will be provided in such a way that you cannot be identified, except with your express permission.

Data from the study (including transcripts, audio files, photographs, diaries) will be kept for a period of 10 years. During this time, they will be stored on a password protected secure server at The University of Sydney. At the end of this time, the data will be securely destroyed, if they have not already been used in published outputs such as articles, books, exhibitions etc.

The research team is based at the Sydney Centre for Healthy Societies at The University of Sydney.

This research study is being funded by the Australian Research Council through a Discovery Project Grant (DP230100372).

You will not be paid for participation however it will not cost you anything to participate.

In the first place, you can contact the research team on healthy.societies@sydney.edu.au.

The ethical aspects of this research study have been reviewed and approved by the St Vincent’s Health and Aged Care Human Research Ethics Committee.

If you would like to talk to someone not directly involved with the study for any further information regarding your rights or should you wish to make a complaint to people independent of the study team, you may contact the St Vincent’s Health and Aged Care HREC Office on svhac.hrec@svha.org.au and quote the HREC reference number HREC_23-05_ABRO.