1. Migrant Information Centre (Eastern Melbourne), Mitcham, Vic
Founder and President, CCSOV
2. Medical writer, Melbourne, Vic
The Chinese Cancer Society of Victoria (CCSOV) began in 1996 with a Chinese social worker, a group of four Chinese people with cancer, and support from three other Chinese health workers. It has grown to an organisation of about 100 people, comprising people with cancer and their families, and is run entirely by volunteers from within this membership, including some health professionals.
Within Chinese culture, cancer is hidden and not spoken of, as it is seen as a stigma on the family. Immigration and lack of familiarity with the language and the health system in Australia impose further difficulties for many Chinese people with cancer in this country. In this context, the CCSOV provides not only a place where people can talk openly, but strong social networks and a raft of other support and education services. Fund raising, always a challenge, has provided another focus for recreational and social activities, while the Society’s publications offer an outlet for the stories of people with cancer. Overall, the CCSOV has contributed substantially to the quality of life of Chinese people with cancer and their families, and it provides a possible model for other organisations of this nature.
This paper traces the development of a unique cancer support organisation in Melbourne – the Chinese Cancer Society of Victoria Inc (CCSOV). The Society, which began simply as a support group affiliated with The Cancer Council Victoria (TCCV), adopted its present name in 2000 in recognition of its aim to offer support services to all Chinese people who are living with cancer, and their families.
Melbourne has a substantial community of Chinese immigrants, many of whom have arrived in Australia over recent decades. Cancer within this community, while it presents many of the same challenges as for the broader Australian community, also raises particular issues and problems that relate to Chinese culture or the experience of recent immigration.
Within Chinese culture, cancer is something to be hidden, a source of shame. It is seen as a punishment visited upon a family for something done in the past by the person with the cancer, by someone in the immediate family, or even by an ancestor. Cancer in a family member thus reflects on the whole family, and is seen as a stigma on the family.
Many Chinese people also equate cancer with a death sentence and dying, within Chinese society, is a very private event. Death is not talked about. Furthermore, many people, particularly among older age groups, fear that cancer is contagious and they will actively avoid people with the disease.
As a result of these attitudes, people with cancer are often isolated within Chinese society, and in an immigrant Chinese community this isolation can be particularly harsh. Normally a person with cancer is looked after by family members, but not everyone in Australia’s Chinese community has family in this country.
The language barrier exacerbates the isolation, and people often know little about how to access information or help when they first arrive in Australia. Many Chinese immigrants who arrived a decade or more ago came from Hong Kong, a proportion with some experience of western culture and English language. Most of these people are now well settled in Australia, with some knowledge of how to use the health and community support systems. Chinese immigrants from Malaysia and Singapore also tend to speak English. Many of the more recent arrivals, however, are from mainland China, have less experience of western culture, and speak little or no English when they arrive. Paradoxically, however, experience in the field suggests that these mainlanders, often from a harsher background, appear less concerned with “face” and more open and willing to ask for help.
Mok and Martinson1, writing about cancer support groups in Hong Kong, identified two aspects of Chinese culture that strongly influence attitudes to cancer and help seeking within the Chinese community. Firstly, a high priority in personal relationships is to maintain strength and harmony, in contrast to the fragmentation that can result from individualism. This is related to the concept of “face”. It leads to a group-oriented culture that emphasises the homogenous nature of society, where difference makes people feel ashamed and embarrassed. People with an illness are reluctant to talk to friends about it because illness sets them apart as “different”.
Secondly, Mok and Martinson1 pointed out that Chinese culture distinguishes between “insiders” (family members and familiar people) and “outsiders” (everybody else). Social dealings within the family group are invested with trust, giving, and feelings of belonging. Social dealings with outsiders are based largely on consideration of personal gain and loss, and interaction tends to involve meticulous and detailed calculations of potential results from transactions, with unwillingness to make even the smallest sacrifice. Reciprocity is important: one should not owe any favours, either tangible or intangible, and should make every effort to pay back any favours owed. Such reciprocity helps to maintain social harmony. In the context of cancer or any life-threatening illness, however, this “economic” approach to relationships makes people unwilling to invest in a relationship with someone who is dying.
This is the context within which the CCSOV evolved. The original impetus was a request from a woman from mainland China with cancer, herself a nurse, to Chinese social worker Dorothy Yiu, who was then working in a centre for older Chinese people in the inner suburb of West Melbourne. The woman with cancer knew of the existence of other support groups and recognised their potential value for combating the isolation she was experiencing.
The first group began in 1996 with only a few people with cancer. The group met at the North Yarra Community Health Service under Dorothy Yiu’s guidance, with help from two Chinese nurses and a Chinese health educator. Its monthly meetings provided an opportunity for these people to sit and chat, in their own language, with people of the same cultural background, about things that were taboo in the wider Chinese community.
The value these early participants gained from the group highlighted the need to offer such opportunities more widely within the Chinese community. Letters were sent to nurses on oncology wards, but numbers grew only very slowly until, 18 months later, the fledgling organisation moved to the suburb of Box Hill, a centre for the Chinese community.
In November 1998, the Group was incorporated and two years later, in November 2000, it adopted its new name, the Chinese Cancer Society of Victoria. The Society defined its aims as follows:
Since that time, the CCSOV has grown to about 100 people. About half of these are people with cancer, with families and some cancer-free volunteers making up the other half. CCSOV now runs support groups at two community health services in the Box Hill and Fitzroy areas. Many people hear of the Society by word of mouth, but increasing publicity has also seen an increase in referrals from hospitals, palliative care services, TCCV, and other service providers.
The CCSOV remains an TCCV-accredited support group and works closely with TCCV’s Living with Cancer Education Program. The support group meetings, however, are only a part, albeit an important one, of the Society’s achievements and activities.
CCSOV has generated strong social and support networks. Many members have become friends and meet often and informally. The Society’s office, located in the Box Hill shopping centre, provides a well-used drop-in centre with tea, coffee and comfortable chairs, and it houses the Society’s growing library of Chinese language cancer resources.
The environment is one where people can make friends, both give and receive support, and not feel threatened. The prohibition on talking about cancer is irrelevant. With everyone in the same situation, there is a freedom to talk, and symptoms that would draw attention outside the group – things such as loss of hair or extreme slowness in eating – are simply accepted.
Within the Society, people have come to see each other as “insiders” or family, as described by Mok and Martinson1. They will give openly of themselves without expecting something in return. The opportunity to offer support and help to others is therapy in itself and fosters a sense of meaning and purpose. Many say after coming to the group that they feel brighter and have found meaning in life again. They no longer want to sit hidden at home.
With careful facilitation and discussion within the support groups, members have also come, gradually, to be able to deal positively with death; to talk about it, acknowledge and respect it, grieve, and move on. This attitude has become pervasive with the Society.
The CCSOV is run entirely by volunteers among its membership. There are currently about 30 volunteers, and together they provide a wide range of services to Chinese people who are touched by cancer. A number of the volunteers have a professional background in social work, nursing, physiotherapy or teaching; others have no formal training. The services they provide are matched to their particular interests and skills, but as a whole, the Society provides home and hospital visits, telephone support, counselling by social work or nurse volunteers (to patients, carers or bereaved families), and urgent practical assistance, such as transport, cooking, interpreting, home duties, and bereavement support.
There are a number of recreational, social and educational activities. Barbecues and festival celebrations (such as Yum Cha for Mother’s Day) are regular events, and there is an annual visit to the country. The Society runs short courses with the aim of helping to alleviate pain and anxiety. Topics vary according to the interests of those in the Society, and have included classes in a range of supportive and interest areas such as T’ai Chi and art. Regular Chinese language community education sessions are publicised by Chinese language radio and press, and have covered topics such as breast health, various cancers, and information sessions on other services such as Centrelink and State Trustees.
Donations, bequests, fund raising and some small grants have enabled the Society to provide one-off financial assistance, including help to people who cannot access social security benefits due to residency status (benefits are not available for the first two years in Australia) or other unforeseen circumstances.
All services are free of charge and, while overheads are low (everything is achieved with volunteer labour), fund raising is extremely important. This has provided a focus for many recreational and social activities, and has involved large numbers of people. The fund raising is a team effort, and again, people see they can contribute, and are important and useful. Fund raising efforts have been helped by the Society’s recent recognition as a charity with tax deductibility status, and a subcommittee is currently working towards corporate sponsorship as well, with promise of success.
The most exciting and profitable of the fund-raising activities has been the Society’s concerts, held in 1999 and 2001, which each raised some $20,000. The strength of these events was their strong community base and the team effort they fostered. Each concert involved almost all members of the Society, showcased many musical and other acts by people within the Chinese community – a highlight being the Society’s own choir – and attracted an audience of some 400 people. This success has provided a major boost to members’ sense of confidence as a society, as well as a significant contribution to funds, and this has been reflected in a considerable increase in involvement, activities and commitment since the first concert.
The Society’s quarterly newsletter features people’s stories of their experiences with cancer, and these have been compiled into a book, Hope, which was launched by Professor Robert Burton, Director of TCCV, at the Society’s concert in August, 2001, to mark the International Year of Volunteers.
Both the book and the newsletters have given volunteers, cancer survivors and carers the opportunity to write of their experiences. The book has been received with great enthusiasm by the Chinese community, and a number of Chinese language newspapers, both state-wide and national, have published extracts. It has had a considerable impact in terms of raising the profile of the Society and raising awareness of the issues faced by Chinese people with cancer.
The success and growth of the CCSOV have generated a number of challenges that need to be addressed in the immediate future.
The demand on volunteer time and, in particular, on the time of the small core of volunteers with health and community support qualifications, has grown hugely; as has the administrative workload related to company law, taxation and the like. Funding is needed to support the employment of a professional and/or administrative worker; but this in itself will bring major changes within the Society that will require adjustment. It has the potential to change the whole philosophy and direction of CCSOV, and will need to be managed with great care.
Publicity remains an ongoing challenge. While CCSOV has many members, there are many other Chinese people with cancer in the community who are isolated, may not know of the Society, and need encouragement to come. Many are not being actively referred. Others may have transport problems. The new CCSOV website will provide another channel of communication, to complement the newsletters and the use of Chinese language press and radio.
In particular, the Society needs to project more widely and clearly the message that no medical advice of any kind is given, either about Western or Chinese medicine. The only advice given is that people should talk with their own doctor; and if they want to use traditional Chinese medicine, they should do so only in conjunction with the treatment advised by their oncologist, and keep their oncologist informed.
The most pressing issues facing CCSOV at the moment, however, are the effective coordination of volunteers and organising an appropriate training package for them. Volunteers will remain an integral part of the Society, and volunteer training is of critical importance. No untrained volunteers are sent by the Society to visit patients or families. Volunteers who speak sufficient English have undergone training through the standard programs run by TCCV or other peak volunteer organisations. The majority of volunteers, however, do not have sufficient English for this, and the approach to date has been to provide training from a volunteer social worker and health educator, as needed. Developing the Society’s own training is a priority.
Nevertheless, over only five years of operation, the CCSOV has grown from a single small support group to a large and thriving organisation that has contributed significantly to the quality of life of Chinese people with cancer in Melbourne. The Society welcomes new members and enquiries about the organisation or the services it offers.
The Chinese Cancer Society of Victoria:
Suite 1112, Whitehorse Plaza
17 Market Street, Box Hill, Victoria 3128
Telephone: (03) 9899 2199
Fax: (03) 9899 2199