Chain of Courage for Children with Cancer

Who is the KanjerKetting for? The KanjerKetting is intended for all children who have been diagnosed with cancer. -

How does this work? The KanjerKetting consists of all kinds of beads. Each bead represents a particular action, investigation or event. There are beads for blood samples or for scans. But also for a very good or a very bad day, the moment the hair starts to fall out, there is a bead for the start of chemotherapy and a bead for every chemo you receive afterwards. And much more. A child / young person can receive a bead after every action or event from, for example, a nurse, laboratory technician or pedagogical employee. -

How does the chain help children during treatment? The chain tells the story of the child. Every chain is different, because every child has its own disease story. The beads show what happened. For the child / young person self, their own process becomes very tangible and visible… literally. But also for family, friends, classmates, boyfriends and girlfriends, teachers, etc. This can be very important for the support and processing for the child and the family. The chain can act as a bright spot for the children. Getting the bead after a treatment or medical examination is often seen as a reward. The chain can also be used to explain to a child the things that are about to happen. -

Is there also added value for the family and environment? Yes. As already written, the chain makes visible what has happened. Not only for the child, but also for parents and family this can be a tool to show what it means to have cancer. Children often have long chains. When outsiders see this, they understand what the child had to endure ... how often and how much a child has undergone examinations and treatments. In addition, the tangible chain is a reminder of the disease process for many families. "Remember, then you got a scan, and then the chemo started, that's where your hair started to fall out" etc. The chain is a guide to the story. -

What do children do with the chain once the treatment is finished? When a child has finished his or her treatment, it is symbolically closed with the last bead: De Bloemenkraal (flower bead). An end to the chain that the children are looking forward to. Many children and / or families keep the chain in a nice bag or box. It is different how or where the chain is stored. I often hear that he is given a prominent visible place in the house. In others, the chain pops up every now and then when talking or thinking about sick time. -

What if it goes wrong and a child dies ...? Unfortunately, that also happens. Instead of the Bloemenkraal, the chain is then closed with the Vlinderkraal (butterfly bead) or the Hartjeskraal (heart bead). Families can choose this themselves. -

How did the chain end up in Belgium? Other countries often contact us because they have become enthusiastic about the KanjerKetting. They have seen these, for example, at international meetings where the VOKK is present. Or the KanjerKetting is known because it has been seen in other children. That is also the case with Belgium. People came in contact with our initiative and contacted us. That's how the ball started rolling. -

Is there 1 bead that children like the most and like the least? Every child has its own preference or own experience of what the bead stands for. It is sometimes funny to see which beads a child likes. The Regenboogkraal (rainbow bead) is a favorite for many girls. While the reason that a child gets this bead is of course less fun: an emergency admission. But which bead children want most, that is of course the Bloemenkraal! This is not only beautiful to see, but what it stands for is even more beautiful: the end of the treatment. Where all families work towards to! -

Since 2007, the KanjerKetting (Chain of Courage) has been a known name for many children with cancer and their parents. Since this time, we often hear from children and parents that the KanjerKetting helps and supports. Nevertheless, we also wanted to map out the experiences with an investigation. In order to find out about these experiences, a questionnaire was made with various statements. Professionals, parents of children who are still in treatment, parents of children who have finished treatment, parents of children who have died, children and young people have responded. The research shows very nice and positive experiences.

From the completed questionnaires we can determine that the KanjerKetting is used by young and old, namely from 0 years to 22 years. We also found experiences that suited different topics:

Processing
The KanjerKetting appears to be able to help with the processing of the disease. One of the youth says that:

"The [KanjerKetting] is a tool to better process the [cancer]"
Girl, 18, finished treatment

Because each bead has a meaning, treatments and events are sort of more tangible and clear. This can in turn lead to processing, if it is possible to process an event, if it is also clear to someone and is understood.

Disease insight
It is therefore important for children that events are well understood. Children then have insight into their illness and understand events better. Where can accept the situation and process it appropriately. The questionnaires show that the KanjerKetting contributes to this. One of the children says:

"In a diary you write every day what you have experienced and the chain also shows what you have experienced"
Girl, 15 years old, still in treatment

The clarity that the KanjerKetting provides about events provides less certainty about a situation. This ensures that again a sense of security, familiarity, competence and development of identity. For example, a child says:

"I knew [thanks to the KanjerKetting] what was going to happen and what still had to happen"
Girl, 11 years, finished treatment

Supportive and treating
The answers to the questionnaire also showed that the KanjerKetting is a good means of sharing emotions. A professional says that:

"Where children sometimes find it difficult to talk about medical actions of feelings, the chain gives conversations in a playful and light-hearted way."
Pedagogical employee, working in a pediatric oncology center

And a parent:
"He only talks about the treatment together with the chain. Without the chain he does not let go much .. "
Parent of a 6-year-old who is still in treatment

Sharing emotions can help to process the disease, the KanjerKetting helps to accept.

Communication with environment
Many parents and children use the chain as a means of communication to talk about the disease and treatment. Especially the nice colors and shapes of the beads, generate interest from others about the necklace:

"People quickly ask for the meaning, which immediately gets the conversation going."
Older 11-year-old finished treatment

Many parents also indicate that others understand better what their species are experiencing through the KanjerKetting. With the KanjerKetting you can see in detail what happened in the hospital and that gives a clear picture. This can also lead to more understanding, for example at school:
"Our daughter also occasionally takes him to school to show what treatments they've all had."
Older 7-year-old, still in treatment

The questionnaire shows that brusses also use the chain for this.

Reminder
For most parents and children, the KanjerKetting is a precious memory, a kind of diary that tells the story. This includes both positive and negative memories. Parents and children determined not to hide these negative memories. The KanjerKetting ensures that you can look back on the period in a positive way:

"Although it is a reminder of a bad period, the chain itself is a positive thing that she proud of."
Older 8-year-old, finished treatment

Barriers / negative themes
With the questionnaire, we also looked at possible obstacles to the KanjerKetting. For example, the statements "The KanjerKetting puts my species on a pedestal", "The KankjerKetting hinders me in the processing" of "The KanjerKetting reminds me of a bad period" were given for this. Answers to these statements were especially negative. Professionals, parents and caregivers and children have little or no negative experiences. The comments on the answers to these questions also show that such obstacles are less experienced. For example, one child answered the question "The KanjerKetting reminds me of a bad period". However, the comment was:

"Sure, that period is not fun, but I also think the KanjerKetting will help you remember how strong you are."
Girl, 15 years old, still in treatment

Conclusion
The KanjerKetting has various positive effects for parents, children of all ages and (care) professionals. The chain has positive effects on the processing process of parents and children, it is a communication aid and a valuable memory for later. This tangible diary makes it easier for children and the family to deal with the disease, during and after treatment. The KanjerKetting gives the possibility to recognize, accept, remember and tell stories.

Links:

• Chain of Courage