The Dutch Childhood Cancer Parent Association developed a training program for the parents who man the help line. They answer questions of parents and grandparents of children with cancer and are there to listen to their stories. Maybe you can use our experiences if you already have a telephone-line, if you want to set-up one or if you just want some information about conversation techniques.
Backgrounds
The Dutch Association - which was founded ten years ago - is organised in a board and several sections. The board consists of a president, a secretary, a treasurer and the heads of the sections. Each section has a special task. The section ‘Attent’ is responsible for the publication of the newsletter, the section ‘Youth and Education’ for the school program. There is a section PR and Fundraising, a section Siblings and last but not least the section
‘Personal (individual) Contacts’ to which I come back later. As the chairs of each are members of the board, there is a constant flow of communication from the sections to the board and vice versa.
Like many other organisations our association is like a big umbrella. Our members are parents of children in treatment, parents of children long or not so long out of treatment, parents of children who died, grandparents, siblings and survivors.
The section ‘Personal Contacts’
The section ‘Personal Contacts’, where parents talk to parents, consists of ten parents who meet on a regular base. The section is responsible for the following activities:
· A telephone help line: the telephone-numbers are published - in Attent, on the wards etc.- so that parents can call directly, tell their stories or ask questions.
· Conversation groups where parents come and talk, exchange information etc.
· Information-desks at meetings and conferences.
A year and a half ago the chair of the section ‘Personal Contacts’ asked me to train the group. We started with the telephone. How to listen to parents (in an effective way)? and How to answer their questions (in an effective way)? It is very easy to answer without listening! Which is NOT effective!
The training
Before you start a conversation you need to know who you are:
* are you a parent of a child with cancer?
* what is the meaning of this experience and are you in some way ahead of it?
* do you know enough about the physical and psychosocial implications of childhood cancer?
* do you respect the opinions and ideas of other parents?
* are you acquainted with the means and goals of your association?
An example: You are the parent of a little boy who died two years ago after a bonemarrow transplantation for his leukaemia. Now you are on the phone with the parent of a child who has a relapse. The mother starts to ask questions about a bonemarrow transplantation. Can you give her an answer without being involved too emotionally?
Now that you know who you are, you must be sufficiently equipped
* a (second) telephone either in your office or at home, and or a special number
* in the home-situation: agreements with your family, which is very important!
* an answering-machine
* a registration-system (be careful with matters of privacy)
* written information to be sent if necessary, for example something about leukaemia, retinoblastoma,
concentration problems, etc.
* knowledge of the people working in paediatric oncology
* support for yourself
Now you know who you are and now you are sufficiently equipped. Some work for you.
Suppose you are at the telephone. Which questions do you expect?
To help you we take "the medical way" as a starting-point.
Why are people calling?
* because they want information
- sometimes another question is hidden behind
- give the opportunity to talk about emotions
* because they want advice
- be careful!, you are a parent NOT a medical or psychosocial professor
* because they want to tell their story
- they don’t ask for a solution, they only want to talk!
Some helping-devices
* The most important point is to LISTEN.
* Show respect and understanding and don not judge
* Let parents feel that emotions are "normal"
* Don’t interrupt too soon
* Don’t tell your own story
* Try to find out what the real question is
* Check! Do I understand that you want me to give you some information about ...
* Each question is important!
* Let parents make their own decisions
* Structure the conversation by asking (open) questions
* Be careful with solutions!
* If necessary: help them to go to their doctors, social workers, etc.
* Help them to formulate their questions
* There are no STUPID questions!
* Maybe it is necessary to call back later
* Take good care of yourself
The training program was very successful. Educational stuff, conversational practices and teambuilding are in this process of equal importance.