The Australian Centre for Grief and Bereavement helps drive innovative resource for family palliative carers
An initiative introduced to support and empower family palliative carers is gaining significant momentum across Australia with ACGB having contributed significantly to its development. An Australian first, CarerHelp is an initiative led by St Vincent’s Hospital Melbourne’s Centre for Palliative Care in partnership with Flinders University’s CareSearch, University of Technology Sydney and Carers Australia, the peak body for unpaid carers in Australia.
CarerHelp is a web portal offering an extensive range of advice and support for Australians who have taken on the role of caring for a terminally-ill person, be it a partner, relative or friend. It is one of the most comprehensive resources of its kind in the world. ACGB participated in the development of CarerHelp as a member of the project team’s National Reference Group and was represented by ACGB’s CEO, Christopher Hall.
CarerHelp was launched earlier this year and is gaining significant traction with thousands of visits to the website over the past few months, validating the need for its development.
Professor of Palliative and Supportive Services at Flinders University Jennifer Tieman said that organisations like ACGB were vital to the creation of CarerHelp.
“The development of CarerHelp benefitted tremendously from the knowledge and expertise of ACGB as our goal was to produce an online resource of the highest quality and comprehensiveness.”
CarerHelp is not only for carers who are already deeply invested in providing end-of-life care to a person, but spans the entire journey from considering if you can or should be the individual’s carer when the time comes, through the entire palliative care experience and beyond. Of the approximately 160,000 Australians who die each year, most need the support of a family carer, particularly those that die at home, which is why the Centre for Palliative Care’s Professor Peter Hudson and other project leaders believe CarerHelp meets a very real need.
"For the first time, family carers have access to a comprehensive and dedicated online resource covering all aspects involved in caring for a terminally-ill parent, partner or friend so that they be as prepared as possible also hopefully reflect on the experience as rewarding one,” explained Prof. Hudson.
“CarerHelp addresses the information needs that carers have told us are important when someone is coming to the end of their life - what to expect as a terminal illness progresses, the practical aspects of caring, how to access community services and the obligatory legal and financial considerations involved in caring, dying and funerals.”
The information is available through a library of videos and downloadable information in article, factsheet and checklist format for family carers. It was developed in conjunction with a large group of family carers and community organisations who shared their knowledge and experiences with the project team. The website includes a page called Carer Voice which hosts a series of videos featuring carers who reflect on their own real-life experiences, offering insight into all parts of the carer experience from deciding whether you are the right person to provide care, to how to cope with grief and loss.
Former Governor-General of Australia and supporter of CarerHelp Dame Quentin Bryce said that the selfless work of end-of-life carers must be acknowledged.
“People who care for a family member, friend or relative are likely to be unpaid and face many challenges,” explained Dame Bryce.
“Caring for someone can involve medication management, financial and legal issues, system management and general care and support. The CarerHelp website will be a great benefit to our palliative care and health system.”
The project is funded by the Australian Government Department of Health.