Carers Australia applauds the National Health and Medical Research Council (NHMRC) for their explicit inclusion of the needs of carers within their recently released Targeted Call for Research into End of Life Care.
Providing care to a family member or friend at the end of their life is a rewarding, yet often demanding and socially isolating experience for carers. Their experiences and wellbeing throughout this challenging time have previously not been at the forefront of research. It is therefore encouraging that in this Targeted Call for Research (TCR), the NHMRC requires carer participation in the research’s planning, conduct and reporting.
“Carers Australia and the National Carer Network are committed to undertaking and supporting high quality research that builds an evidence base about what best supports carers,” said Carers Australia CEO, Ms Liz Callaghan.
“I strongly encourage any applicant for the TCR to work with us to ensure best practice when engaging with carers.”
The TCR aims to identify best practice approaches to end of life care that are meaningful for patients, carers and families and coordinated within, and sustainable for, the health system, after being prioritised in 2019 by the Australian Health Ministers’ Advisory Council (AHMAC) Working Committee.
It includes the needs of carers within the objectives and intended outcomes, specifically:
- recognising, accommodating and respecting patients, families and carers preferences and values,
- identify best practice support for families and best practice training for carers, and
- increase the awareness of patients, families, carers and the community of the options, preferences and ethics for end of life care.
Beyond the outlined objectives, it is essential that any research considers the diversity of patients and carers, and how this will impact on their experiences and needs at end-of-life, including Aboriginal and Torres Strait Islanders, CALD, LGBTQI+ and young carers.
“Many people wish to be cared for at home for as long as possible, and may wish to die at home. This is an impossible task without carers,” said Ms Callaghan.
“End-of-life provision needs to be able to recognise and respond to carers’ needs, especially when an illness progresses and carers often need to provide more intensive care whilst balancing employment, their own health and their feelings of grief.”