Over the past half century, medical care has become less institutionalised, more autonomous, equitable and less costly. This has led to a shift from hospital-based delivery to community care. This paper examines the experiences of Canberra-based carers following this shift using interview data from a longitudinal qualitative study of 32 informal carers of a spouse with cancer. Cancer patients experienced poorly coordinated care. When carers observed the effects of errors and miscommunication on patients, they felt compelled to coordinate patient care. Interview data suggest that informal carers of cancer patients are relied upon to manage patient care at home and in hospitals, but are not supported in undertaking this responsibility. This implies that carers should be a far more central focus in cancer care reform strategies.
What is known about the topic? Shifts in Australian models of care mean much of the care-work associated with cancer has moved from hospitals to home. Little is known about the implications of this shift on carers of cancer patients, a population at high risk of stress, depression and anxiety.
What does this paper add? This study offers a rare qualitative approach to understanding the experiences of carers of spouses with cancer in Canberra-based hospitals. Their accounts suggest that cancer carers are relied on to coordinate care for their spouse on a long-term basis at home, in hospitals and across multiple medical modalities.
What are the implications for practitioners? This high reliance on an informal caregiving population with a well-documented risk of stress, anxiety and depression suggests that strategic changes need to be made to support carers. As states and territories begin to implement cancer care coordinators as part of a cancer reform strategy, carers should be a central focus.