Mark A. Chesler Chair, International Confederation of Childhood Cancer Parent Organizations &  Professor of Sociology, University of Michigan, Ann Arbor, U.S.A.

We are all grateful for the tremendous medical advances that have improved the life chances of children and adolescents diagnosed with cancer, especially for children in the wealthier nations of Western Europe and  North America. Unfortunately this is not the case for children in Africa,  Asia, Eastern Europe and Central and South America. Moreover, despite  these medical advances, children and parents throughout the world face  major psychological and social stresses as they deal with this disease.

Our research and conversations with parents indicate five major types of  stresses they experience: informational, practical, interpersonal/social, emotional, and existential/spiritual.

As they deal with these stresses  parents cope in many different ways, and one common coping strategy is to  reach out to others for social support. Such support can come from many  sources: family members, friends and neighbors, co-workers, medical and  psychological staff members. Some of the most important support comes from  other parents of children with cancerothers who have walked the same path  and have had similar experiences. I want to talk with you today about the  kinds of groups parents of children with cancer organize to support and  help one another, and to describe some of the things these groups do.

Local groups.

Many parent support groups are formed in local communities, sometimes around a clinic or treatment center. These groups generally focus on helping parents deal with the above five sets of stresses, especially the  emotional and interpersonal stresses. These groups may be large or small and they may last several weeks or several years. Generally they plan sessions where parents talk about their children, about family matters,  and even about difficult relationships they may have with the medical  staff. As parents in these groups get to know one another they may share  deep feelings, with talking and crying and laughing with one another. Some of these groups also plan informational sessions, where veteran parents share their coping suggestions or where members of the medical staff give  talks about new treatments. In addition, some of these groups raise funds  to help parents meet the financial and practical needs associated with  being a family of a child with cancer.

National organizations.

In many nations the local groups are all part of a national network, sometimes a formal network with local charters and rules and sometimes a very informally organized association. National organizations  of parents of children with cancer generally seek to coordinate and share information and resources sometimes money but usually information and advice) among local groups, local families and group leaders. They  accomplish these ends through newsletters, meetings and conferences. In  some cases, national organizations provide funds to local groups and in  some nations they gather funds from local groups to operate. Many national organizations also have access to influential  policy-makers and can have a voice in the development of decisions about insurance legislation, cancer research priorities, and the improvement of medical and psychosocial care. They also often establish liaison with national organizations of pediatric oncologists, nurses, social workers, and teachers, working together to serve the needs of families of children with cancer.
There is substantial variety in how national organizations operate. Of the 30 national organizations that are part of the International Confederation (ICCCPO), 14 were formed prior to 1990, some  were started by parents and some by Cancer Societies or physicians, and most are run by Boards of Trustees or Governors populated primarily (but not totally) by parents themselves. Some national organizations have established very strong lines of accountability with their local groups, while other national organizations are held together very loosely. The U.S. national parent organization (Candlelighters  Childhood Cancer Foundation) includes about 400 local groups, Germany (Deutsche  Leukamie-Forschungshilfe) 50, Japan (Childrens Cancer Association of  Japan) 11, Sweden (BarnCancerFonden) 7, and Netherlands (Vereniging Ouders Kinderen en Kanker) and South Africa (Childrens Hospital Oncology Clinic).

They also vary greatly in their financial resources, with four national  organizations raising the equivalent of more than 1,000,000USD annually and many national groups (especially from Eastern Europe, Asia and Central and South America) having minimal, if any, funds.

The International Confederation.

The International Confederation was formed in the mid-1990s, via conversations in Hanover in 1992 and a formal declaration in Valencia in 1994 (Jesus Gonzalez Marin was a key figure in forming the Confederation  and its first President). We have held annual meetings every year since: in September 1999 we will be meeting in Montreal and in the fall of 2000 in Amsterdam.
The International Confederation has several core goals, all of which are intended to share information and experience among parents and others to improve access to the best possible care for children with cancer and their families throughout the world. Its programs include:

1. Assistance to national and regional parent groups and organizations Workshops on fundraising, working with parents, relating to medical staffs, creating special camps, building a strong organization. International conferences and visits to national organizations
2. Information resources Newsletter, website, bibliography of resources, all available through the
Secretariat located in Toronto
3. Liaison with medical and governmental agencies SIOP, WHO, UNESCO, health and cancer-oriented companies, foundations and charities. The voice of parents of children with cancer.
4. Advocacy and education. Creating awareness of family concerns (access to care, discrimination,  psychosocial resources) and promoting access to quality care.
5. Special focus on parents and parents groups in less wealthy nations Networking, visiting, establishing twinning programs, help in forming groups, and providing scholarships to meetings.

I am glad to be here with you at this conference, to bring greetings from parents and parent organizations throughout the world. I hope that together as individual parents and individual physicians and medical  staff members, local parent groups, national parent organizations, and the International Confederation we can improve access to care and the quality of total medical and psychosocial care for children with cancer and their parents throughout the world.