by Michaela Willi and Sabine Karner, Survivors group Austria
The Austrian Survivors group runs no own organisation. It is an important part of the childhood cancer parent organisation within the country.
History of development
In 2003 survivors from Austria participated in an ICCCPO congress for the first time. The exchange with survivors from other countries was very fruitful and motivated all to create similar offers for survivors. This experience encouraged the Austrian survivors and so they started to be active and established the Austrian survivors network with help of the “Austrian Childhood Cancer Organisation”. The first meetings were held in Vienna and afterwards also in Linz and Innsbruck.
During the first years of the network the main focus was on offering regular survivors meetings for the exchange of personal experiences. By and by the number of survivors attending the meetings increased and at the same time also the variety of activities and programmes. The small network quickly developed into a group with an organisational structure.
Meanwhile the Austrian survivors have a range of activities to offer like different kinds of meetings in many Austrian cities, mentoring programs and workshops. Moreover, there are survivors groups in five Austrian cities (six Austrian cities have paediatric oncology wards), Vienna, Innsbruck, Linz, Klagenfurt and Graz (Figure 1).
The Austrian childhood cancer organisations are illustrated by different colors and the regional locations of survivors groups are marked by flowers.
Organisational structure of the Austrian survivors group
a) Separate organisation or part of an organisation (e.g. parent organisation)
The Austrian survivors group does not run an organisation of its own, it is a group within the “Austrian Childhood Cancer Organisation” (parents organisation).
For better understanding here is some background information about the structure of the parent organisations in Austria (Figure 2): The structure is federal and similar to the official structure of the state. It consists of the “Austrian Childhood Cancer Organisation” and six regional organisations which are named by the region for which they are responsible. All childhood cancer organisations are coequal and independent.
The regional childhood cancer organisations are located beside paediatric oncological wards and they are responsible for the area from which the patients come (Figure 1). Their main work is the support of families whose children are in treatment.
The “Austrian Childhood Cancer Organisation” is the only one which is not directly linked to an oncological ward. The focus of its work is on psychosocial aftercare of children and adoles¬cents and their families on providing information material for concerned families as well as raising awareness, exchange on an international level and political lobbying.
This organisational structure influences the situation and location of survivors groups espe-cially the hierarchy.
The organisational structure of the Austrian survivors and the Austrian childhood cancer organisations and their interactions.
b) Leadership of survivors
The Austrian survivors group has one “umbrella group” and five regional survivors groups (two groups of these are very new and still in development). Each regional survivor group fits to a regional childhood cancer organisation and the umbrella survivors group belongs to the “Austrian Childhood Cancer Organisation” (Figure 1).
The umbrella survivors group has two leaders and each regional survivors group has one or two leaders.
From the beginning of the Austrian survivors group a workshop for the leaders of survivors groups is organized annually. It is a very important occasion for sharing activities, ideas, reflection and future plans of survivors work, motivation for group leaders, communication, discussion of problems etc. It is a weekend workshop supported by a facilitator.
The regional groups have a strong interaction with the umbrella survivors group to share experiences and work. This means that the umbrella survivors group supports the regional groups with public relation material like website, leaflets and posters and regional survivors groups exchange mainly ideas, like finding new survivors or offering activities.
c) Target group
The target group of the Austrian survivors are young adults who have had cancer in childhood or adolescence.
d) Aims and principles of the survivors group
- We take care of children and adolescents who have been diagnosed with cancer and give support in handling their situation in treatment as well as after therapy.
- Nobody suffering from cancer should feel alone. To be a survivor means to be a part of a group and everybody should have the possibility to get in contact/get in touch with other survivors.
- We are focusing on the needs of children and adolescents with cancer. Uncertainty shall be reduced by meetings, talks and exchanging of experiences.
- In our meetings we try to create a friendly, understanding and appreciative atmosphere. Survivors can exchange their thoughts and feelings with others who have made similar experiences.
- We are an interest group for survivors of childhood cancer. Survivors often have to handle late effects – medical and psychosocial – and they have a lot of questions (e.g. to find a job, disability etc.).
Ressources und infrastructure
a) Activities of survivors groups – what do we offer
Survivors meetings take place in Vienna, Linz and Innsbruck. The monthly meetings are very different and depend on the needs of the survivors and the regional structure. Some survivors meetings take place in a pub and others in the office rooms of the childhood cancer organi-sation with or without a facilitator. There are also meetings with different activities, like going to the cinema, painting, visiting museums, having picnics, carnival parties, beating drums or sportive activities.
Once a yea,r a summer party for all Austrian survivors takes place. This meeting is organised each year by a different(?) regional group.
There are also seminars moderated by a facilitator. The aim of these seminars is personal development, strengthening of personality and self-confidence and support of the individual social network.
Since 2004 Austrian survivors visit patients in paediatric oncological wards (Vienna, Inns-bruck, Linz and Graz). As a preparation for this task a special mentoring program is offered which consists of several modules: Introduction module (one weekend, 20 hours), self–awareness and psychosocial training (four weekends, 80 hours) and communication training (three weekends, 60 hours). All courses are held by professionals.
- Website – www.survivors.at
- Survivors newsletter
- Facebook group
- Newspaper of childhood cancer organisation
c) Funding and support
The financial situation of each group depends on its local childhood cancer organisation. This means that each group has different financial resources for its survivors activities.