Caring for someone who is dying can be very difficult. Often, people are caring for someone who is very close to them. This makes the end of life very emotional, which can be hard to cope with. Relationships can change significantly, and the caring role can become much more intense at this end of the caring journey.
The CarerHelp website was released in October 2019 to provide support to carers caring for someone at the end of life. In developing the website, the CarerHelp Project Team not only reviewed the research evidence and existing web resources but spoke with carers of people living with advanced disease and recently bereaved carers to understand what would help then in providing care.
Since its release, there have been over 30,000 visitors to the website and nearly 90,000 page views.
Responding to need
By working with carers, we learned that carers have different needs and that needs can change over time. The CarerHelp website includes five pathways: When someone needs care; Caring when death is a possibility; Preparing for Dying; When the person is dying; and After caring.
However, the last two years have seen new challenges for carers as Australia responded to Covid19. CarerHelp produced specific factsheets to support carers looking after someone with palliative care needs during this pandemic. We also ran a promotional campaign on key issues for carers.
To make CarerHelp resources more accessible, we developed a package of printed information and resources for specialist palliative care services can use with the families of their patients. This was released in September 2021.
Planning for the future
Carers need to know, through information, that they can safely be heard, with information that is accessible to them and that they are not alone in the role of being a carer, irrespective of background, language, culture, faith, abilities and limitations, age, or gender and sexual identity. Through our National Reference Group member organisations, the CarerHelp Team is consulting with community leaders and community members from a whole range of diverse populations to discuss their views on the type of end-of-life information they think is important. We will then be able to access tailored and appropriate information on caring for someone at the end of life in a range of formats. CarerHelp will be improved so that there is a simple entry point and directory to assist diverse people find the information that is most suited to their culture, language, abilities, and identity.
Creating trustworthy resources
The Department of Health has funded CarerHelp to provide current and trustworthy advice and resources. Carer Gateway includes CarerHelp as a resource in its information on Planning for the end of life and Carers Australia has been involved in developing CarerHelp and the information kit for developed for specialist palliative care services.
CarerHelp is a trustworthy resource for carers and part of the caring network for carers and families caring for someone at the end of life.