Completed Research Project
National inquiry into the social impact of caring for terminally ill people
Investigators: Kristjanson, L. J., & Aoun, S.
Funding: Palliative Care Australia ($35,454).
Abstract: PCA undertook this national inquiry to gather policy, opinion, experience and research related to the social impact of unpaid caring for the terminally ill. The national inquiry project consisted of two parts: (1) a review of the literature to highlight the contribution made by unpaid carers to Australian society and to investigate the impact of caring on their lives, the challenges and difficulties they face; (2) an analysis of the public submissions from individual carers and/or their support organisations or service providers. The picture that emerged from the public submissions was that carers for the terminally-ill make do with whatever information and support was available to them or comes to their attention, should they happen to be at the right place and at the right time, or have the know-how to navigate the system. Those fortunate to have had support felt positive about their caring experience, while those less fortunate carried their caring tasks at the expense of their physical, emotional and financial wellbeing. The experiences of carers suggested that a considerable amount of service contact/access is occurring on a randomised or ad hoc basis.
The recurrent themes that emerged from the submissions by carers and support organisations on gaps in services were grouped into four categories, which at times were interrelated: Information and education, financial and employment difficulties, respite and other support services and community recognition. These findings were further supported by the literature review. Carers’ health and wellbeing seems inextricably linked to the availability, quality, responsiveness and cost of support from health and community services. Carers reported a need to access adequate and flexible resources, fairer remuneration, more respite care, training and equipment, counselling and bereavement support, personal and home help and improved access to the paid workforce. Needs of special groups were also highlighted in this report, in particular older and younger carers, those from Indigenous and CALD backgrounds, those living in rural areas and those with chronic disabling conditions whose eligibility to access palliative care is restricted. There was compelling evidence to indicate that the work of carers is undervalued and marginalised in the Australian community. The national inquiry in its two parts, the literature review and the analysis of public submissions, reinforced the importance that policy responses and resources be focused on this area of service to help carers perform a vital and important role into the future, particularly as carers were increasingly replacing skilled health workers in the delivery of unfamiliar complex care for the terminally ill.
