Chika Boca is an association of parents, guardians and friends of children with malignant diseases. It was created in 2011 for the purposes of bringing together parents, who in the course of oncological treatment or the exit of the healing process. As well as having a need for the past and present experiences to share with those with the illness of their loved ones.
We are proud of our parent’s volunteer engagement and commitment and belief that we can really change a lot.
The way we talk (or write) is a key part of the identity of Chika Boca. Our “voice” is an important tool for helping people understand who we are and what we do. It helps give us confidence and inspire them to join us. Our voice – one that is consistent, clear and easy to understand.
Chika Boca´s Language is universal, starting, and active and direct – (USAD) “Chika Boca tone”. These principles express Chika Boca´s passion to support families whose children have been affected by cancer.
Universal because families affected by cancer have the opportunity to be involved in improving the lives of cancer. Our communication is available. We invite people to get involved and join us. We sound like a human being, not as an institution. Personal experience is priceless and understandable and serves to help people understand life with this disease.
Starting because we are confident in our beliefs. Speech from the heart is the speech that reaches out to people. No aggressive, scary or incitement. Passion and honesty are only recognizable.
Active since in all our communications, we are practical. Informatively talk about the disease itself. We want to transfer energy to people – energy so that it is easier to live with the disease, the energy to do something to help others, the energy to engage in Čika Boca. The interest is not material, our interest is a good feeling in our hearts and when, if anything, share your experience with others.
Direct because we clearly and directly express ourselves, trying to get people to understand us quickly. We’re not talking double meanings and do not give promises and advices.
Positive, but realistic, honest. These are the words that should be kept in mind when talking or writing about cancer. If it is necessary to mention death, not being shy of it. Acknowledge the fear, pain and confusion, but never use language that would probably intensify that fear. People always come first. Our work is primarily about people, not about the disease.We listen to what people feel and whether they need something and what we can do to help.
We’re talking about “people (children, family) who are living with cancer.” The word “patient” is used only if we talk for example about the hospital situation. Diseased ones and families are not passive recipients of care and support. Never use language that suggests the issue of ‘victims’ or phrases like “fight against cancer.” People do not define disability, age, race, color or religion.
Part of our work is guidance only and refers to the disease, and we tried to explain unfamiliar medical terms in a more accessible and understandable way.
We know very well that we are not the only ones who think this way, we know that neither we, nor were we able to understand with each parent, but we try to understand each parent, legal guardian who is or was in a fight for her child.
On the 4th page of the manual of the Childhood Cancer International, known as CCI (ex ICCCPO), based in the Netherlands writes:
“One of the principles of leading, all those who are in some way related to children’s cancer to young patients and their parents offer the feeling that they are not alone in difficult moments during treatment.”
A massive trauma with which families can meet, is the diagnosis of the disease where the life of their child is threatened. From that moment on-wards, family life will never be the same.
We, the parents who have passed through this experience, we are in a unique position to understand through what parents with the ugly diagnosis pass today. It is very often a motive for the creation of parent groups, which are supposed to provide mutual support for parents and children whose struggle is just beginning, but also for parents and children who are out of that fight.
The organization of our association:
The organs of our and your association are:
- Assembly (Assembly of associations represented by members and honorary members)
Parents or guardians of children with or treated for malignant disease are the voting members at the General Meeting. Members may be adults who were treated for malignancy as underage
- The Association members and honorary members.
Honorary members of the association can be all those who have that wish.
The difference between a member and an honorary member in making decisions related to the association. Parents and guardians only have the right to vote in the association.
- from among the members elected representative of the association is chosen and four vice-presidents of the association.