caring@home - Evidence-based resources for providing end-of-life care

Evidence-based resources for providing end-of-life care.

Dani Neal​​​​, APNA Communications and Campaigns Coordinator 

Source: APNA Primary Times Summer 2024-5

If asked, most Australians would say they would like to die at home, surrounded by those who love them. But for those requiring end-of-life care, their choice over their place of death is often taken away when control and dignity matter most. Managing symptoms – especially pain, breathlessness, nausea, and anxiety – at home can be daunting without adequate support.

This lack of support and resources can be a particular issue for those living in rural and remote Australian communities.

Launched in 2017, the caring@ home project is conducted by a consortium including APNA, led by the Brisbane South Palliative Care Collaborative, and funded by the Australian Government. The project has developed a range of practical, evidence-based resources for carers and health professionals, including nurses.

At the heart of what caring@home offers are its palliative care resources boxes. These boxes contain everything needed to teach carers to safely look after someone who chooses to be cared for at home. They are free for clinical services providing palliative care to people residing in the community and include printed resources for families, USBs with training videos, and practice demonstration kits for nurses and other healthcare professionals to use when teaching carers how to give subcutaneous medicines.

The resources for carers are available in various formats and are designed to be easy to read or watch.

‘We didn’t want to make anything overly complicated because at this time, people are stressed, they are tired, they are emotional and they’re experiencing grief,’ says Professor Liz Reymond, Project Director for caring@home.

The first of the palliative care resources boxes were launched in August 2022 and focused on the needs of Aboriginal and Torres Strait Islander families. The Palliative Care Clinic Box was developed over 18 months in consultation with First Nations communities, health professionals in specialist and generalist services, and relevant peak bodies. The box has been a huge success, with 1,000 provided to clinical services.

This success led to the development of the Community Palliative Care Resources box, launched in July 2024. The new box is suitable for the broader Australian community. The team at caring@home applied learnings from the Clinic boxes, including developing new personal care resources and updating others to make them more accessible for carers. All resources are also available for download from the caring@home website.

Both boxes have become invaluable, with one carer saying it gave them the confidence to keep their loved one home until the end: ‘We knew when the pain hit, we were able to do something to try to relieve it immediately without having to sit waiting, powerless, for someone to come and do it.’

For more information about the caring@home resources, visit www.caringathomeproject.com.au.