Resources support end-of-life family carers

Friday, 29 May, 2020

Resources support end-of-life family carers

Caring for a family member is described by many as one of life’s toughest challenges. With this in mind, thousands of family carers across Australia are the focus of a campaign to empower them with the knowledge to provide high-quality care while supporting their mental health.

Be the best carer you can be — promoted as part of National Palliative Care Week 2020 — is an initiative of CarerHelp, which is a comprehensive online resource dedicated to supporting Australians who provide end-of-life care. The campaign announcement marks three months of awareness activity in which the health community, non-profit organisations and everyday Australians will be encouraged to help spread the word about CarerHelp.

The web portal offers advice and support for Australians who have taken on the role of caring for a terminally ill parent, partner or friend. The initiative is 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.

“At any given time, there are many thousands of Australians supporting a person in their final weeks and days of life — an undertaking that most are not personally prepared for emotionally or in terms of skills and experience,” Flinders University Professor Jennifer Tieman explained.

“Family carers come from all walks of life and this means there is no easy way of communicating with them. We are relying on support from the community in general to help us get the word out that this fantastic resource exists.”

More than 160,000 Australians are expected to die each year — almost all of these will 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 [can] be as prepared as possible [and] also hopefully reflect on the experience as [a] rewarding one,” Professor Hudson said.

“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.”

Information is delivered via a video library as well as articles, factsheets and checklists. 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 that 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.

“Dying is a reality of life and many of us will be involved in caring for someone we love. We know that many people who are terminally ill can only remain at home because family and friends support them by caring,” Professor Tieman said.

“Our goal with CarerHelp is to be a very useful resource for very special people who provide care and comfort to loved ones when they need it the most. Carers are vital members of the Australian community and we are so thankful for what they do.”

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,” Dame Bryce explained.

“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.”

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