How do carers come together? Researchers require health care workers and volunteers for important study

The University of Western Sydney is continuing a study of the resources and support systems that are required to allow more people their wish to die at home, surrounded by their friends and family.

In 2010, the Caring at End of Life study requested that members of the community share their experiences of caring for a loved-one with a terminal illness at home.

Associate Professor Debbie Horsfall, the lead researcher from the UWS School of Social Sciences and Psychology, says 96 people came forward and gave the researchers a valuable insight into the day-to-day challenges of caring.

“The common view was that caring for a loved one at home was an immense task, which required a whole network of support – of friends, neighbours, family, work colleagues and community members all pitching-in to help,” says Dr Horsfall.

“Encouragingly, the majority of the participants found that this help was indeed available. In their times of need, informal care networks were established within their communities and these networks grew and became more active and supportive as time went on.”

For the next phase of the study, people who provide support to people in their homes are being called upon to also share their experiences.

Dr Horsfall says the support workers will be asked to participate in focus groups and discuss their encounters with informal care networks, and the ways they have worked alongside each other to provide care and support.

“We are hoping to involve people who provide in home formal supports, including nurses, respite and in-home support workers, and transport volunteers,” says Dr Horsfall.

“If you live in Greater Western Sydney or the Central Coast and work in any field that relates to the support of terminally ill patients and their carers, please contact the UWS researchers and offer your assistance in this important study.”

Focus groups are to be held on February 13 in Penrith, February 16 in Liverpool, and March 13 on the Central Coast. For more information or to participate, contact Research Assistant Niki Read on (02) 4736 0368 or visit

The research project is being conducted by Associate Professor Debbie Horsfall from the University of Western Sydney, in partnership with Dr John Rosenberg from Calvary Centre for Palliative Care Research ACT, Associate Professor Rosemary Leonard from CSIRO and Ms Gillian Batt from Cancer Council NSW.

This project is funded by the Australian Research Council in partnership with Cancer Council NSW and has been approved by the University of Western Sydney Human Research Ethics Committee (approval number H9255).


31 January 2012

Contact: Danielle Roddick, Senior Media Officer