The Picture Across the Region

A Snapshot of "Self-Help or Mutual Aid"

The breast cancer support group and networking movement in the Atlantic is still relatively young but appears to be growing. Independent groups tend to form spontaneously to respond to needs. The support groups which do exist in each province often cover enormous catchment areas. Independent breast cancer support groups have existed since 1993. None of the groups or networks have staff or core funding.

While some of the groups can be clustered according to their primary purpose -- advocacy, support, mutual aid, social etc., each is unique. Support work in each province is quite different.

Those groups which seem to be the most stable and vibrant have strong and committed people in leadership roles. Who plays this role varies. In some cases it is survivors who came to the group with professional "helping" backgrounds or had previous experience in participating and running groups or organizations. In other cases it is professionals from the community who have the commitment and skills to play the role and who take on the function although they may not be survivors.

Canadian Cancer Society (CCS) volunteers have been involved in helping initiate and facilitate some of the independent breast cancer support groups. Most continue with their CCS involvement but see the independent support groups filling a need which cannot be met by Reach to Recovery (one-to-one visitation for women with breast cancer) or Living with Cancer (group emotional support for various cancers).

Although CCS's Living with Cancer provides support for people with all cancers, a high percentage of participants are women with breast cancer.

Breast cancer support groups and services mostly address a white, Anglo culture. "Self-help and mutual aid" are not looked at in the same way by all communities. While some common issues and themes cut across all communities and cultures, a number of specific needs exist and should be highlighted in terms of support groups and services for African Nova Scotian, First Nations and Acadian communities.

A Snapshot of "Partnerships and Coordination"

Many community women's groups ( Women's Centres, Status of Women, Acadian women's organizations, Catholic Women's League, Women's Institute, union women's committee etc.) are very committed to the issue of breast cancer and have participated in education, awareness and fundraising activities. Many expressed an interest in doing more; however, they were not certain about their role or have too limited resources to extend their work.

Several people noted the success of the newly-formed Prostate Cancer Information/Education groups as a model of good partnership involving different stakeholders. These newly-formed groups are perceived by some to have greater endorsement of the medical system than breast cancer groups, as evidenced by many urologists providing men with referrals to the groups.

In a number of communities the showing of the breast cancer film "Exposure: Environmental Links to Breast Cancer" (Butterfield & Zuckerman), provided an opportunity for joint activity by groups who don't often work together. In one instance the film showing led to individuals undertaking independent "mapping" of breast cancer cases in relation to pesticide use in their community.

There is a strongly-held view among many that the various actors in breast cancer care should work together more. Some fear that the creation of new initiatives might foster greater competition and divisiveness.

The Atlantic Breast Cancer Information Project (ABCIP) is recognized as having produced useful materials and created a forum for bringing together a number of stakeholders around informational support needs. There's concern about how information will continue to be produced and coordinated after its mandate ends in the late summer of 1999. Sustainability plans in relation to ABCIP may provide an opportunity to bring together the various players to explore future coordination and cooperation.

The "Run for the Cure" sponsored by the Atlantic branch of the Canadian Breast Cancer Foundation is helping to raise the profile of breast cancer throughout the Region. There will soon be "Runs" in each province. The Foundation's fundraising is dedicated to supporting research projects at the national, and for the first time this year, also regional levels.

A Snapshot of "Leadership Development"

Most individuals who were involved in initiating breast cancer support groups still play a key leadership role. The transfer of responsibilities from the persons who started the group to others in the group is becoming more important with passing time. Training sessions could help to reduce the risk of "burn out" before new people are able to assume major roles or share the work.

The Self-Help Clearing House in Prince Edward Island and the Self-Help Connection in Nova Scotia have been involved in leadership training initiatives with breast cancer groups. They, along with a variety of women's groups, were identified as being good sources of support. These organizations are willing to continue to play this role.

The Canadian Cancer Society has established training programs for facilitators and volunteers involved with their support programs. They also have materials and programs in French.

Next: Provincial Highlights