Participation information

Carers past and present, their supporters and services providers in the end of life care sector are invited to participate in a study conducted by Associate Professor Debbie Horsfall, School of Social Sciences, University of Western Sydney.

Please phone 02 4736 0368 if you’d like to know more about this research.

What is the study about?

The aim of this research is to provide in-depth understandings of informal and formal caring networks when someone who is dying is being cared for at home. Informal networks are described as friends, family and neighbors while formal networks are provided by services through health professionals and volunteers.

We are interested in how these networks work together to enable caring in the home. The findings may be useful for other people who are caring, service providers as well as enabling organisations to better support carers and their networks.

If you are a carer, we will not be talking to you about the experience of caring, as such, but about the relationships and social (or community) networks that supported you while you care/d. We are also interested in how these friends, neighbours, family, work colleagues or people help out now and then. The type of things support networks do can include: picking the children up from school; popping in for a chat; mowing the lawn; doing the shopping; providing some ‘time out’ for the carer; ringing people up to see how they are going; organising projects and tasks that need to be done.

If you are a service provider, we are interested in how you work with and support informal care networks.

What does the study involve?

This project has 4 stages

Stage 1. Service provider focus groups. Service providers will discuss their experience with informal networks, their perception of the nature, role and benefits/problems of informal care networks, and their current and/or potential role in assisting carers to establish and/or maintain informal care networks. The focus groups will last 2 hours and be audio taped and transcribed.

Stage 2. Interviews with Carers. Past and current carers will be interviewed exploring the nature and role of informal and formal support networks. Prior to the interview the carer will be given 2-3 disposable cameras to take photos of the events and things that represent their experience of caring and draw a map of their support network. The interview will last 1-11/2 hours and be audio taped and transcribed.

Stage 3. Focus groups with caring networks. Carers will be given assistance from the Research Assistant to contact their self-identified informal network. The aim of the focus group is for the social networks to respond to the photos and later develop a network map. In particular we are interested to discuss the effects on social networks and community building and their attitudes towards end of life care and dying at home. The focus groups lasting 2-3 hours will be audio taped and fully transcribed.

Stage 4. Interviews with the “outer networks”. People who participate in the carer interview or focus group will be asked to circulate information to people in the outer-networks. Participants in the outer network will be each interviewed about the role they played in the caring network and the effects if any this network has made to their attitudes about death and dying. They will draw networks maps and be interviewed for approximately 30-45 minutes. Interviews are audio taped and fully transcribed.

How much time will the study take?

How much time the study takes is dependant on which stage of the project you are participating in, but this is between 2-3 hours.

Will the study benefit me?

The study will provide an opportunity to reflect on both the formal and informal caring experience and reconnect participants with people in care networks.

Will the study involve any discomfort for me?

It is not expected participating in the project will cause discomfort however a list of support services is provided.

How is this study being paid for?

The study is being sponsored by an ARC linkage Grant which is a funding partnership between the Australian Research Council and Cancer Council NSW.

Will anyone else know the results? How will the results be disseminated?

All aspects of the study, including results, will be confidential and only the researchers will have access to information on participants. The results will be communicated in a final report which will be shared with all participants, community organisations and stakeholders. Results will also be presented via conference papers, book chapters and journal articles.

Can I withdraw from the study?

Participation is entirely voluntary: you are not obliged to be involved and – if you do participate you can withdraw at any time without giving any reason and without any consequences.

Can I tell other people about the study?

Yes, you can tell other people about the study by providing them with the chief investigator’s contact details. They can contact the chief investigator to discuss their participation in the research project and obtain an information sheet.

What if I have a complaint?

This study has been approved by the University of Western Sydney Human Research Ethics Committee. The Approval number is [H9255]. If you have any complaints or reservations about the ethical conduct of this research, you may contact the Ethics Committee through the Office of Research Services on Tel +61 2 4736 0229 Fax +61 2 4736 0013 or email Any issues you raise will be treated in confidence and investigated fully, and you will be informed of the outcome.

If you agree to participate in this study, you may be asked to sign the Participant Consent Form.

How do I get involved?

To obtain further information or get involved in this study please contact Research Assistant Niki Read at or on 02 4736 0368

To preview the information you will be given as a participant, hover your mouse over Research Information in the heading bar then over Participation Information, then click on either ‘consent forms’ or ‘information letters’.