The hardest thing we have ever done - Palliative Care Australia

Conclusion
This literature review has exposed the nature and extent of physical, social, and
psychological morbidity and economic disadvantage that caregivers suffer as a direct result
of their caring role in general, and home palliative care role in particular. Many studies, both
national and international, have reported the negative impact of caring and that caregivers
have significant needs related to their role which remain unmet, despite the significant
contribution of carers to the economy. In Australia carers in general, contribute over $20
billion to the national economy, and the unpaid workforce is estimated to be about five
times the paid workforce, in terms of full-time equivalents.
This review outlined the demographic characteristics of nearly half a million primary
caregivers involved in the informal care of children, adults and older persons with disabling
chronic and terminal conditions and the common tasks associated with caring. Seventy
percent of carers are women of middle age. In addition to women, issues of added
disadvantage of special groups of carers have been highlighted such as those living in rural
and remote areas, those from culturally and linguistically diverse backgrounds, indigenous
carers, carers of children, elderly carers and carers of neurodegenerative conditions.
For carers, the two highest-priority unmet needs are for information and for support from
health care professionals. Carers’ health and wellbeing is inextricably linked to the
availability, quality, responsiveness and cost of support from health and community services.
Carers need to access adequate and flexible resources, fairer remuneration, more respite
care, training and equipment, counseling and bereavement support, personal and home help
and improved access to the paid workforce.
The national and international literature, which addresses the needs of caregivers in general
and those involved in the delivery of home palliative care in particular, points to the
following recommendations to decrease the burden of caring:
• policy developments in the taxation, social security and income/pension benefit domains,
to ease the financial hardship of carers
• more carer-friendly workplaces, with flexible employment arrangements and better
opportunities to go back into the workforce, particularly for women who make up 70%
of the unpaid caring workforce
• coordinated service funding and service provision across all levels of government (federal,
state and local) to ensure equitable social and geographical distribution of services
• a comprehensive and coordinated approach to the evaluation of services, to ensure closer
links between policy and practice and develop standards for service quality for carers
• education at a community level, to promote the social value of caring and an awareness
of the demands and impact of the caring role
• educational materials geared specifically to caregivers using appropriate methods of
information delivery
• education of health professionals to improve communication and timely access to
support services
• focused strategies that address the barriers carers experience when attempting to
seek support
THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004
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