Carers central to cancer care – new study

Monday, August 27, 2012


A new study reveals that people with cancer rely on family members and informal carers to ensure they receive appropriate care.

This study is reported in the most recent edition of the Australian Health Review, the peer reviewed journal of the Australian Healthcare and Hospitals Association.

“Shifts in Australian models of care mean that patients and their carers have come to play a much more significant role in the treatment of serious illnesses. The site of care has also shifted with hospital stays becoming shorter and more treatment being delivered in the community,” study author, Dr Rebecca Olson from the University of Western Sydney, said today.

“There are many advantages to these changes, such as greater patient autonomy and improved quality of life for patients. However, one disadvantage is the increased demands that are placed on spouses, families and other informal carers.

“Many carers now manage the bulk of care, providing emotional support, housework, personal care, as well as appointment and transportation management. This breadth of care may be responsible for the high levels of neglected health problems, depression, anxiety and stress experienced by cancer carers compared with their non-caregiving counterparts.

“This study offers a rare qualitative approach to understanding the experiences of carers of spouses with cancer. 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. Our research found that cancer patient care was poorly coordinated and fragmented. Carers felt compelled to coordinate care and that the medical system seemed to rely on carers to manage patient care, but did not support them in providing this care.

“Carers described the current state of care as one where medical staff work hard, but often made errors. Medical staff forgot to give patients anaesthesia before surgery, or gave the wrong anti-nausea medication or none at all before chemotherapy. Carers also found communication inconsistent. They reported miscommunications, such as medical staff misplacing messages from oncologists and hospice staff. Communication from and between hospital staff and general practitioners (GPs) was also described as ineffective.

“Most carers eventually concluded that they could not leave the care of their spouse up to the medical system; they must become the care coordinator. They saw themselves as essential to ensuring their spouse received appropriate care: the right diagnosis and the right medication, at home and in the hospital. This involved recordkeeping and, at times, actively challenging medical staff.

“Given this increased responsibility, it is clear from this research that carers need more support. They need information as co-clients in need of psychosocial support; as co-workers providing care at home; and to help them navigate their spouse through many different community, charity and hospital-based services. Carers of cancer patients need clearer information and directions on how to perform
caregiving tasks at home, who to contact for support in potentially emergency circumstances, and information on support services such as counselling, support groups, respite services and financial support.

“There have been new developments in cancer care over the past decade, such as multidisciplinary cancer care teams and cancer care coordinators.  However, these often do not take informal carers and their needs into account. This research demonstrates that we need to make carers central to cancer care reform strategies, because carers are currently coordinating patient care at home and across multiple medical modalities. They also have low levels of wellbeing, are more likely to report negative perceptions of cancer care and their experiences have a direct impact on patients’ experiences.

“Supporting carers as ‘co-clients’ and ‘co-workers’ recognises their role in providing care and saving the healthcare system billions of dollars. Exploring and trialling cancer care reform strategies that evaluate improvements in patient care and carers’ experiences should be a primary research priority.

“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. I hope that as states and territories begin to implement cancer care coordinators as part of a cancer reform strategy, they take note of this research and make carers a central focus,” Dr Olson said.

For more information and comment:  Dr Rebecca Olson  02 4620 3226
Mr Paul Grocott Acting Media Manager, Office of Marketing and Communication, UWS 0406 429 304