A cancer diagnosis can be a devastating experience for the person concerned, but for families and loved ones, who later become the primary source of support and care, it can be a stressful, life changing experience. A unique new study will explore the individual experiences of these unsung heroes and identify the support services they need.
The three year project is funded through a prestigious Australian Research Council Linkage grant, and will be led by the Gender, Culture and Health Research Unit (PsyHealth) at the University of Western Sydney, in conjunction with the Medical Psychology Research Unit at Sydney University; Westmead Hospital; The Cancer Council NSW; and Carers NSW.
The study's Chief Investigator, Professor Jane Ussher from the University of Western Sydney, says most of the responsibility for day-to-day emotional support and care of cancer patients falls to partners, family members or friends.
"When you consider that last year alone, almost 85 000 Australians were diagnosed with cancer, the disease has a massive flow-on impact throughout the community," says Professor Ussher.
"Supporting and taking care of a loved one diagnosed with cancer is extremely demanding, and can place a heavy burden on the emotional and physical resources of partners, family members and friends."
"Previous research conducted by the project team has indicated that depression and anxiety are widespread among carers, at a more severe level than experienced by cancer patients themselves.
"In addition to the impact this has on the quality of life of carers, this can also affect the quality of care that loved ones are able to provide to cancer patients, so it's important to give these people the support and resources they need to get through these difficult times."
Professor Ussher says the study will be the first to look at the specific experiences and needs of both male and female cancer carers in Australia.
"A far greater proportion of women than men have contacted a telephone helpline operated by The Cancer Council NSW, and this is an aspect we would like to explore in greater detail," she says.
"Our previous research has shown that women carers report higher levels of anxiety and depression, and have more unmet needs, than men who are caring for a person with cancer. However, there is also evidence that men suffer in silence, and do not come forward for help."
"We want to understand the different experiences of male and female carers, and how their responsibilities impact on their respective psychological and physical well-being, and whether more gender-specific resources might help."
Both male and female cancer carers from across NSW are encouraged to take part in the study.
Participants will be asked to fill in a questionnaire about their experiences of being a partner, family member or close friend supporting someone with cancer. A number of Sydney participants will be invited to take part in one-on-one interviews, where they can elaborate on their experiences.
A range of support services will then be offered to all participants, including group support, online support, one-to-one telephone counselling, and workshops, and their effectiveness evaluated.
"We believe that caring for the physical and emotional needs of partners, family members and close friends is an essential part of caring for people with cancer, as research has shown that carers' wellbeing may have an impact on the patients' wellbeing" says Professor Ussher.
"We hope that by developing a range of innovative intervention programs, we can reduce the distress of carers and help inspire their charges with hope for a brighter future."