What are the top key areas that unpaid carers need help with when caring for a person at the end of life?
Carers and clients are welcomed into Palliative Care services as a unit. Carer capacity to undertake their caring role, as well as their psychosocial and practical support needs, should be considered in the assessment process and ongoing provision of care.
Key areas impacting on end-of-life caring vary. Carers come from a wide range of age groups, sociocultural backgrounds, and life experience. It is important that the hopes, expectations, and priorities are expressed and heard.
Unpaid carers need to know they are valued as a crucial part of the care team, that support is there both for the caring role and the impact of caring. Their concerns, challenges and observations matter to the palliative care service providers.
A key issue is being supported with clear communication on the daily realities of caring until the end of life. This includes understanding the burden of care, knowing what to expect in the final days, what the options are, and that it is ok to say when things need to change.
An outline of costs related to medication, equipment, and transport is helpful, as well as information on where extra assistance may be available. Access to a Carer Payment or a Young Carer Payment may need to be supported.
Ensuring authorising legal processes have been addressed for bills, banking, superannuation and funeral costs, while everyone is still able to have clear communication, is important for all involved.
"Unpaid carers need to know they are valued as a crucial part of the care team, that support is there both for the caring role and the impact of caring. "
Why is it important that we have tailored information resources to support our carers?
Carers have vastly different life experiences and levels of health literacy. A priority support need for one is not the same as the next person. Tailoring resources that reflect social, cultural, and linguistic diversity acknowledges and respects carers, their experience and support needs in the caring role.
Can you tell us about the Victorian Palliative Care Consortia and how they collaborate with others to support the needs of diverse Australians, including those caring for persons at the end of life?
In Victoria we have eight Palliative Care Consortia. The consortia are a collaborative of palliative care providers across their specified region; they identify and plan responses to regional needs and work closely with peak bodies.
To deliver specialist palliative care in their region, consortium members work together to continually improve inter-agency communication and systems, promote awareness of Palliative care in the community, support professional practice development, and promote equitable access to Palliative Care services.
" Tailoring resources that reflect social, cultural, and linguistic diversity acknowledges and respects carers, their experience and support needs in the caring role. "
To support this, consortia undertake various projects, collaborate with peak bodies, participate in project reference groups for community and grass roots end of life care initiatives, and connect with community across the spectrum of cultural and social diversity via a range of networks and service provider meetings. It also includes providing training for the palliative care sector members on issues connected with palliative care practice, communication, culture, and diversity competence.
What do you look forward to in the CarerHelp Diversity Project?
The current website holds a range of very helpful resources. We look forward to these being extended to further reflect the voices of our diverse community, including young carers and Aboriginal communities – both metropolitan and remote.