An ongoing study by the University of Western Sydney into the experience and needs of cancer carers has revealed that there are major differences in the way men and women cope with the role of caring for a loved-one with cancer.
Preliminary results from the three-year study, which is being conducted by the Gender, Culture and Health Research Unit (PsyHealth) at UWS and co-funded by the Australian Research Council and Cancer Council NSW, show that women cancer carers experience higher rates of distress, have more unmet needs and a greater burden of care than men.
The first stage of the study involved surveying 217 cancer carers, aged between 21 to 85, about the experience of cancer caring. The majority of the carers were caring for their husband, wife or partner with either breast, lung, brain or prostate cancer.
According to Chief Investigator, Professor Jane Ussher, the results reveal men and women adopt typical gender roles when it comes to caring.
"It has been well-established that women are positioned as natural carers or better suited to the caring role than men and thus expected to take on caring tasks and responsibilities without question, regardless of their situation," says Professor Ussher.
"Being a cancer carer is not a gender neutral experience - it is closely tied to gendered expectations of being 'woman' or 'man' which has considerable implications in terms of psychological well-being and coping.
"The majority of female carers who took part in the study gave accounts of being positioned by others or by themselves as natural all encompassing expert carers with an unquestioned competence to perform complex quasi-medical tasks such as injections and medications with little or no instruction or support.
"This resulted in experiences of over-responsibility and self sacrifice. Women reported having no freedom and no time for themselves with the caring role taking up 24 hours a day, seven days a week, requiring their own self care to be sacrificed.
"Women also revealed they often felt isolated and expected to cope on their own, with little social, or emotional support and no attention given to their own needs or concerns."
Dr Ussher says in the majority of women carer's accounts, the caring role produced a range of ambivalent emotions.
"Women spoke of feeling overwhelmed, out of control, and wishing it was over, then being consumed with guilt for having such thoughts," she says.
"The nursing and medical profession were a particular focus of anger on the part of many women carers.
"Women reported being offered a lack of support and assistance and being expected to take on a high level of care and expertise when left alone."
"But they also felt they had to be careful not to 'lose it' with the medical profession, because of a 'fear of causing waves' and therefore kept their anger and frustration to themselves."
According to Professor Ussher, in contrast male carers predominantly positioned caring as a competency task to be mastered and as a job 'you've just got to get on with'.
"None of the male carers described caring as a 24/7 activity and many of the women being cared for by men were still conducting household tasks such as cooking and cleaning, with the male carer only taking on those tasks which were absolutely necessary," she says.
The study also found that emotional mastery was considered a central part of caring by men.
"A number of male carers reported that the most difficult aspect of the caring role was dealing with the emotions experienced by their partner who had cancer," says Professor Ussher.
"Physical tasks of caring were seen as unproblematic in comparison to the unexpected and previously unasked for, emotional labour required.
"Many men spoke of avoidance or repression of their emotions believing that any move to let their guard down was shameful or a sign of weakness."
"This reflects gendered expectations of masculine behaviour, wherein outward expression of sadness or vulnerability is positioned as 'feminine' or 'weak' with men expected to be in control, leading to avoidance as a coping strategy."
Professor Jane Ussher says the research highlights how important it is for female and male carers to have the support they need to care for cancer patients effectively. The second stage of the study will develop a range of support services to directly target carer needs.
"More than 32,000 Australians in NSW are diagnosed with cancer each year and when you take into account the number of carers involved, cancer has a massive flow-on impact throughout the community."
"We need to better 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."
The researchers are looking to recruit more carers for the study. Partners, family members or friends who care for cancer patients who would like to participate in this study should call 1800 19 20 02 or e-mail:
cancercarers@uws.edu.au."