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Survivor groups and young people seminar in Germany

by Maren Bösel, Survivors Germany

The German Survivors offer a lot of activites and programmes for the Survivors in their country. Here you find an overview of their offer:

General information

Germany_OrganisationalStructure

Explanation of the Figure:
The German survivors groups do not run an organisation of their own. There is a close connection with the different regional and national parents’ organisations and the hospitals. More than 70 regional parent groups exist in Germany, most of them are member of the umbrella organisation (DLFH) and the German Childhood Cancer Foundation (Kinderkrebsstiftung).

Currently, we do not know how many regional survivors groups exist within Germany. The financial and advisory support is different – some survivors groups have support, others not.

A few national activities for patients and survivors exist in Germany: A bicycle tour, national young adults meetings, mentoring project, Survivors magazine “Total normal” and the “Waldpi-raten Camp”, which was founded by the German Childhood Cancer Foundation. More information is available under www.waldpiraten.de.

National activities for patients and survivors

a) „Young people seminar” for young adults during and after cancer treatment
Aims and key aspects

The national seminar should give information and support in all questions, which are associated with cancer and disease related handicaps. The aims are to support social integration, personal development and the ability to communicate.

Target audience are young adults during and after cancer treatment:

  • with health related impairment problems and young adults during the illness who have problems to be integrated into society
  • who have no contact and exchange with other affected persons
  • who suffer from an illness which caused disability.

Key aspects of the program:

  • lectures on medical developments
  • lectures on psychosocial standards and therapies as well as requirements for communication with young patients
  • development of requirements for long term after care
  • use of social media and its implications
  • enhancements of the project “Patients help patients” (mentoring programme)
  • presentation and practical training of physical activities
  • creative and handy crafts workshops
  • offering outdoor adventure activities

The presenters of the seminar are therapists and educators. Also Survivors could take over this part, when they have required special knowledge in specific areas of interest. Many survivors are committed to helping patients and survivors with handicaps.

Organisation of the seminar

The invitations will be distributed to:

  • young adults, who are in contact with the German Childhood Cancer Foundation
  • psychosocial teams in hospitals and rehabilitation clinics
  • self-help-groups
  • childhood cancer regional parent-groups
  • Oncologists in private practice.

Participations fee

Participation is possible for the majority of young adults. The fee is not too expensive, so that there are no social nor financial obstacles for potential participants. Additionally, refunds for transportation expenses are granted.

Agenda

The seminar contents are discussed with the participants. It is important that the wishes and questions of the participants are in the focus of the seminars.
During the seminars new projects for patients and survivors are developed. Two well known projects are the bicycle-tour and the project “patients help patients”. Some survivors are delegated to the international meetings for Survivors at the annual meeting of “International Confed-eration of Childhood Cancer Parents Organisation” in cooperation with the SIOP conference.

In general the seminar should enable the participants to take an active part and to advocate for the needs of patients and survivors.

Beside the national young adults seminar there is currently one seminar, which is dealing with one special topic. Examples for the special topic are partnership, sexuality or body attentiviness.

b) Bicycle tour “Regenbogenfahrt”

This special bicycle tour exists since 1993. Every year survivors from all parts of Germany participate in the one week long tour. During the tour the participants visit different hospitals, where children and teenagers with cancer are treated. The aims of the survivors are

  • giving hope
  • to provide examples for life perspectives after succesful cancer treatment
  • to create public awareness for cancer in young patients

The tour is supported by the German Childhood Cancer Foundation, and sponsored by different bicycle companies and suppliers, German bicycle clubs and a public health insurance company.

More information is available under www.regenbogenfahrt.de

Regional groups for young Patients and Survivors

In Germany there are different regional groups for young patients and survivors. In the following two groups will be described, which have a long and differing history. Those two groups can be seen as good examples of the two different organisational structures of survivors groups in Germany. One group was established and is led by survivors, and the other was founded by a parent organisation.

a) Young survivors group organized by survivors supporting other patients and survivors
History of the group:

Since 1993, there is a group for young patients and survivors in Heidelberg. A patient had the idea for the group. The young man wanted that the patients keep in touch after the therapy. He and a nurse established the concept for the first meeting. The first meeting should have been a paper chase with different tasks. Unfortunately he died two days before the first meeting. The group started as planned in his memory. The group consist of teenagers with from age 12 and older.

During the years the group grew bigger and the age range became wider. In 1998 the group was split in two groups. There is a group for children and teenager from 9 to 17 years and a group of young adults over 18 years.

How are the groups organized?

The leaders of the groups are former patients. Both groups are supported by the regional parents group with financial aid, transportation and facilities. Invitations are sent by email. Both groups have a common homepage.

How often are the meetings? Which activties are performed by the group?

Every month the groups have their meeting. Possible activties are: Swimming, trips in the surrounding of Heidelberg, afternoon play session, handicraft work, visits to the theatre, bowling, cooking. Additionally, the young adult group offers every year a holiday week and a weekend seminar. The weekend seminars have a special topic for example:

  • body perception and language,
  • advent seminar,
  • naturopathic treatment in oncology
  • physical fitness after a cancer disease.

More information about the group http://www.jugendgruppe-hd.de/

b) Young group lead by the regional parents group
History of the group:

Since 12 years, there is a young group in Frankfurt. A nurse of the hospital and a member of the parent group developed the concept. The participants are teenagers from 13 to 22 years. The group is open for siblings.

How is the group organized?

The responsible member of the parent group organizes the meetings. The teenager will be in-volved in generating the agenda and in the organisation. Every participant is allowed to ask for an activity. If the activity is suitable, it will be part of the program. The parent group works together with the nurses of the hospital. Using this channel, the information about the young group is spread amoung the patients. The website is a good source for a variety of information about all aspects of the group. The parents group gives also financial support for the activities.

How often are the meetings? Which activties are done by the group?

The meetings are monthly. Different institutions offer activities for the group, for example theatre visits, dancing workshops, photoshootings and much more.

https://www.kinderkrebs-frankfurt.de/gruppen/jugendliche

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