Your child became ill many months ago, or was it years? The diagnoses: cancer! You accompanied your child through long months of therapy. The therapy is finished now. Your child has survived.
Nevertheless, nothing is as it was before. The time of illness has left deep impressions on you, on your child, your family and your relationships to one another.

"A cancer diagnosis in any member of the family imposes change, disrupts the family's homeostatic balance and unsettles the operational guidelines for interpersonal behaviour."

Today about 75% of all children and young people suffering from cancer in developed countries can be cured. For parents and the child, this progress and improved prognosis not only means hope for cure and survival, it also means the necessity to deal with the problems and issues, the child suffering from cancer will have to face in the future.

Often years after the completion of the therapy the parents of cancer patients who survived show symptoms of posttraumatic stress, statistically even more often than the patients themselves.
Studies have shown that most parents continue to worry about their child's condition from five to twenty years after the illness ("Damocles-Syndrome").

After the end of intensive therapy, which usually consists of long periods of hospitalisation, bringing additional problems, it takes a long time for the family life to get back to normal. During this time of hospitalisation, the clinic becomes a familiar environment, where the staff has managed to convey a feeling of security. Parents often feel left alone once their child has been discharged from hospital. They have the feeling that "the ground has been taken from under their feet". The family is now physically closer, however personal closeness and affection often has to be built up again and worked on. The physical and psychological state of exhaustion that parents have felt through the intensive time but were not allowed to live out breaks through the barriers they had put up. Their energy reserves are often exhausted. Their own physical ailments begin to surface. Everyday life becomes controlled by irrational fears.

Parents report having psychosomatic problems such as insomnia, loss of appetite, digestive problems, headaches as well as the fear of possible relapse or contraction of another form of cancer. Many parents are worried about the possible negative side effects resulting from operations, radiotherapy or chemotherapy. Source of worry for some parents are the difficulties faced by their son or daughter in seeking employment and in signing for life- or health-insurances. 

All parents regret the neglect of the siblings.

Earlier conflicts of the partners, which became unimportant during the time of acute illness, and problems, which lost their intensity during the time of illness, come to the surface again, demand a solution.
Furthermore, as time goes by, there is less understanding by those surrounding the families of the former patients, their families and their problems, which are connected with the earlier illness, because the illness is gone such a long time ago.
From the experience of recent years one can estimate that about 30% of the parents suffer from somatic and psychosomatic symptoms and illnesses.
Originally this means for us as "Kinder-Krebs-Hilfe" (Children's Cancer Aid) providing a setting where parents are given the opportunity of dealing with the issues of returning to 'normal life' and offer the help necessary to make this possible.

Treatment concept of the oncological aftercare concerning the aspect of posttraumatic stress disturbances

Based on these reasons and encouraged by a program of the children's clinic in Philadelphia (Surviving Cancer Completely Intervention Program) the Austrian "Kinder-Krebs-Hilfe" has organized a weekend program for the parents of children and teenagers formerly suffering from cancer in cooperation with the oncological outpatient department.

This weekend program is offered twice a year (from Friday evening until Sunday afternoon). The seminar for the parents comprises of groups each made up of 16 to max. 20 persons. 
The first evening is set apart for reflection upon ones own family situation and the changes one would like to make. Already here it became obvious, that despite the different ages of the children and the different diagnoses the problems of each family are very similar. One main theme was finding the right balance between the closeness or distance in the relationship to the child, the parent and to the hospital.

On Saturday the first part is focused on the relationship and experience with ones child. The aim is to become aware of the child's strengths and abilities and to gain confidence in their ability to cope with the future.
The second part deals with working on the difficult traumatic situations the parents faced during the life-threatening stage of the illness and the psychosocial experiences they went through afterwards. This is presented theoretically and then the parents (divided in separate groups of men an women) share their experiences. Finally partners take part in a communication training. 

On Sunday everyone tries to work out for him/herself concrete steps he/she could take from what was heard and experienced during the seminar. Elements the seminar is compiles of are apart from the cognitive experiences also hypno-therapeutic techniques, movement and creative actions. 

In the planning of the program it was made sure that sufficient time would be available for informal exchange among the parents. It becomes obvious how difficult it is for parents, after the shock of hearing a life threatening diagnosis and the difficulties that accompany the necessary treatment, to cope with the physical and psychological effects of the illness, which affects them, the child as well as the whole family.

Aims:

Reduction of posttraumatic stress-symptomes caused by the cancer diagnosis and its therapy for the whole family
Reflection and 'working through' the early cancer illness of the child

Themes:

o fears
o understanding of cancer and treatment
o social support
o family communication as a specific area of change 

In order to give closer insight into the reason, why we like to continue offering these seminars, we asked the participants to share their experiences. We asked four questions and requested that partners answered independently from each other. There were encourages to answer the questions as spontaneously as possible and not to prepare beforehand what they would write.

THE QUESTIONS

Question 1

What motivated you to take part in this weekend ?
Mother: Return to normal family life. To have the same positive experiences, which my child made during seminars for young people, in order to benefit for the family life.
Father: Share with those who have had to face similar situations. To get answers to questions one feels left alone with.

Question 2

What comes to your mind by the headline: "It is over! - Is it over?"
Mother: No, nothing is over. The anxiety continues to grow and one tries to suppress it. Thoughts like: What have I done wrong during the therapy and especially now after the therapy, never go out of ones mind. How can I live with this stress and nevertheless improve the family situation, while not always controlling the other members of the family.
My anxiety - could the illness reappear or who will be the NEXT one - could be transmitted to the family.
Father: It is perhaps a period of life experience that's gone, but it is never over!
The family members and the internal family structure begin to readjust to everyday life. Everyone works through the issues of cancer differently. This leads to different positions in the family causing quarrels without reasons and this can unconsciously influence the productivity at work. In the family circle these problems are rarely, if at all, talked about, because: lack of time. If there is time it does not happen at the flick of a switch; everyone has his own problems which are important to him, so nobody is really able to listen to the other. 

Question 3

Have you noticed any specific changes after the seminar either within the family or with outside contacts (friends)?
Mother: I have learnt TO LET GO and not only with the ill - now healed - child, but especially with my other child. Both cope now with their own problems by themselves. I am, always there when THEY need or want me. The issue cancer is no longer in the foreground of our talks.
Shortly after the seminar I was in a bad state both psychologically and physically. I realised how much I had suppressed instead of having worked out. But now sometime after, I feel that this was good. I learnt to work through, to face every situation, however painful it may be.
Father: Somehow I felt good afterwards. One is not alone, there are other parents who are in the same situation. After the seminar I could look at our family situation from a birds-eye perspective and this gave me a certain objectivity in the way I saw the situation. At least I have learnt to reflect on inside feelings with a certain distance.

Question 4

What would you like the "Kinder-Krebs-Hilfe" parents organisation to do for parents after intensive treatment is over?
Mother: These seminars should take place immediately after the end of the therapy. They didn't exist then and for our family (except our ill son) there was no, or almost no kind of working-through-process.
Father: Well, a second one, to be able to share experiences with other parents again while at the same time getting competent advices from specialists. Many things we learned and picked up in the seminar have been either forgotten, pushed out or not been integrated enough into our daily family routine. Through this seminar some things were brought back to us and refreshed in our memory. 

The next seminar will follow in Spring 2003.
Elfi Schattauer
Kinder-Krebs-Hilfe.  Vienna, Austria.  Tel:0043/1/408 50 90.  www.kinderkrebshilfe.at