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Cancer sufferers need their own language

Delivering inclusive, culturally sensitive cancer support services for ethnic communities is a pressing challenge for health teams, writes Cannas Kwok.

Breast cancer is a growing but often unacknowledged health problem among women in Sydney’s Chinese-Australian community. Although the rate of occurrence is still lower in this group than among Caucasian women, diet and lifestyle changes make the risk of breast cancer 40 per cent higher than among their counterparts in China. This translates to an increasing number of Chinese-Australian women who contract breast cancer – as well as an increasing number of survivors.

Our research team has undertaken studies to explore the experience of Chinese-Australian women with breast cancer and their needs.

The findings show cultural norms, values and beliefs play a significant role in shaping the breast-cancer experience of these women. Some women believed the stress resulting from living in Australia, where life is a struggle due to language barriers and ‘culture shock’, contributed to them contracting breast cancer. Some women who had regular mammograms believed they had a preventive effect and relied solely on them to detect cancer. These women then neglected symptoms they discovered and reacted with frustration and anger when they were later diagnosed with cancer.

Due to a misconception that mastectomy ensures a better survival rate and prevents recurrence, the majority of women in the study chose this procedure rather than conservative breast cancer treatment. They were not concerned with body image issues, believing life and health were a good trade-off for the loss of their breasts.

The women described their breast cancer experience as a time of isolation, because while families formed the most important type of support, at times it was difficult to obtain this support. Interestingly, the women did not identify any members of the health-care team as having been a source of psychological or emotional support nor as a potential source of these forms of support.

The majority of women in our study also emphasised that cancer information and resources available in Australia were neither culturally nor linguistically appropriate for the Chinese-Australian community. This combined with a lack of social support services reinforced a feeling of victimisation as breast cancer patients.

It is important to note cancer is seen as a stigmatised and contagious disease in Chinese culture, in which coping with illness is viewed as largely a private and family affair. This is exacerbated by the fear of cancer-associated stigma, which means that in order to avoid the danger of social isolation patients often avoid discussing their illness with friends.

Taking these factors into account and also the needs identified by Chinese-Australian breast cancer survivors, our research team between 2009 and 2010 launched a community-based, culturally sensitive and linguistically appropriate cancer support group program for Chinese-Australian women with breast cancer.

The program was conducted in collaboration with a Chinese cancer support organisation and encouraged participation and experience-sharing among participants. It involved eight weeks of information sessions, culturally and linguistically tailored for women with a Cantonese-speaking background who were being treated for breast cancer.

A combination of Chinese medicine and Western health promotion strategies aimed at nurturing well being and preventing breast cancer recurrence were discussed while alternative therapies were also explained. For example, along with contemporary nutrition science, the use of traditional Chinese food remedies for managing the side effects of cancer treatment and prevention of cancer recurrence was also explained. The role of traditional Tai Chi exercises and Qigong in promoting physical fitness and stress management was also explored.

An evaluation shows these approaches were well received by women. The women in our program reported they had gained confidence in managing the disease and expressed appreciation the information was provided within a common cultural context. All women stressed there was an urgent need for this kind of program to be provided on an ongoing basis.

Although Australia prides itself on being a multicultural society and endeavours to provide comprehensive cancer services and support to cancer patients, the design of these programs is based on mainstream culture. Our research team was encouraged to see it could do something meaningful for this group of women who have been left behind in our health-care system. The team believes the success of this program has important implications for providing culturally sensitive cancer support services and cancer care for women not only in the Chinese community but also other ethnic communities in Australia.

Dr Cannas Kwok is a lecturer with the school of nursing and midwifery at the University of Western Sydney.

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