NGO Čika Boca &MladiCe – 2011 – present

ByAdministrator

NGO Čika Boca &MladiCe – 2011 – present

Čika Boca &Mladice

2011-Present

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.

start

2011 - Present

Čika Boca

Čika Boca is an association of parents, guardians and friends of children with malignant diseases. Members of the parents and friends of children treated for cancer. Faced with many pressing problems of children affected by rare and malignant diseases, we organized the first as an informal group in 2010, and in 2011 officially registered organization. We implement projects and programs related to improving the quality of life of children and young people treated for cancer.
Our mission is to support families who are battling with malignancy.

2012 Gathering survivors group MladiCe= Youth+C

1 Radio MladiCe

The results of the focus groups: Benefits from Membership and Activism

2 Panel Discussions

On University of Medicine, Psychology 
Topic: Improvement of the partnership:Bio-Psycho-Social Model

Result: Part Of The University Curriculum

3 Camp WCDE

Health-related quality of life changes of children and adolescents with cancer after WCDE camp

4 Mentoring

Continuing education – Training of peer teams:

for active participation in our programs

5 Back to School

Education of students (workshop approach) in primary and secondary schools on childhood cancer and creating an inclusive environment in schools.

6 Social Inclusion

Supported by the Ministry of Education;
publications / guides for teachers to work with children with cancer

7 Advocacy

8 Evaluation research


9 Human Living books project

The Human Living books is a true sense of the word, a library of people. We host events where readers can borrow human beings as open books and have conversations they would not normally have access to. Every human book from our bookshelf represents a young cancer survivors in our society that is often subjected to prejudice, stigmatization or discrimination because of their diagnosis, disability etc.

10 Online peer support for young cancer survivors

Peer support is a term that refers to the exchange of support among people who share the same experience, do not necessarily have vocational education, and use the experience they had gone through as a source of support. Peer support groups provide environment for exchanging experiences, accepting new points of view, considering concerns and doubts, raising awareness of personal strengths and resources, and gaining the confidence for facing the future.

Life after cancer
Mental health of the young (adolescents and young adults) and peer support

There is a significant conflict between the demands of the developmental stage and the demands of the disease.

They want more independence from their parents and they gradually start developing a sense of independence and taking control of their lives, but cancer and demands of treatment provoke a sense of dependence, lack of independence, and loss of control over their lives

Peers gain tremendous importance in adolescent’s life, a sense of belonging and closeness in the peer group develops, but cancer provokes a sense of isolation and not belonging based on the uniqueness of the experience that a person goes through during the diagnosis and treatment.

A sense of sexual identity and attraction develops, but cancer treatment can affect sexual health and a personal sense of sexual attractiveness

Executive functions, such as planning, organization, mental flexibility, and reasoning are being developed, but cancer treatment impairs cognitive functions, and may also affect achievement at school or at work, as well as making significant educational and career decisions

There is a very strong need to shape their future, to make meaningful plans for the future, but the disease and the treatment make the future seem vague, unclear

What is peer support?

Peer support is a term that refers to the exchange of support among people who share the same experience, do not necessarily have vocational education, and use the experience they had gone through as a source of support. Peer support groups provide environment for exchanging experiences, accepting new points of view, considering concerns and doubts, raising awareness of personal strengths and resources, and gaining the confidence for facing the future.

Internet peer support

Online peer support is a community connected to a specific site, in which members exchange information, provide each other with emotional support, help each other cope more easily with problems that trouble them, and develop confidence in their problem-solving abilities.

Adolescents and young adults gladly use the Internet to satisfy diverse needs characteristic of this age group, which is the reason why online peer support is well received at that age. The advantage of Internet support is its accessibility to people who are tied to their homes or live in geographically remote areas. In addition, it ensures anonymity and a higher level of privacy for those who do not wish to reveal their identities or are too reserved to share intimate details concerning their lives in person.

Why is peer support important for adolescents and young adults with cancer?

Adolescents and young adults suffering from cancer face challenges which are typically important at this age, such as starting romantic relationships, making decisions about reproduction, tackling issues related to identity development, establishing a sense of managing your own life and becoming independent, making educational and career decisions, etc. The experience of having cancer requires additional effort to overcome these challenges. Peer support communities help young people feel that they are not alone in this complex procedure of fighting a disease that fundamentally changes their way of life. Users of peer support cite the opportunity to share their experience with someone else who has gone through the same health crisis as the main benefit of peer support. Authenticity, shared experience and empathy are among the most cited factors that provide basis for getting closer, opening up and becoming open to receiving support.

What are the specific benefits of peer support?

  1. Sharing emotions about one’s own situation and the challenges that one faces brings emotional relief and a sense of acceptance and understanding
  2. Exchange of information on available resources in the community and practical support regarding access to these resources encourages the feeling of managing one’s life
  3. Exchange of experience and the opportunity to learn from others who have been in the same or similar situation has a positive effect on confidence in finding solutions to problems
  4. Belonging to a support community helps reduce isolation and feeling of loneliness

What does peer support entail?

  1. Emotional support

    Emotional support facilitates dealing with feelings of fear, anger, sadness, and loneliness by creating an atmosphere of mutual understanding and compassion and acknowledging feelings of all the parties involved.

    Information support

    Information support is the process of sharing information, usually gained through personal experience, about treatment types and procedures, medication and its side effects, diet, exercise and physical activity, mental health, reproduction, romantic relationships, education, careers, etc.

    Support in overcoming problems and challenges

    Members help each other change their attitude towards frustration and difficult experiences so as to handle them better and find a positive side which makes even some of the hardest experiences valuable.

    Support related to identity and life after cancer

    Members encourage each other to accept cancer, the cancer treatment, its consequences and everything that life after cancer brings. Together they attempt to find meaning in what they have been through or what they are still going through and help each other embrace this experience as a part of their identity.

The importance of supervision

  1. Online peer support projects are complex. It is unrealistic to anticipate everything that awaits us once the online communication starts. Many things are not entirely under control and it is to be expected that supporters will face challenges which were not discussed in detail during the training and for which they are not prepared.

    Thus, the success of peer support largely depends on good monitoring and supervision, as well as continued education. Monitoring and supervision enable the supporter to take challenges in their stride, positively impact the supporter’s confidence and prevent burnout.

    Supervision is a type of support to supporters. It entails regular meetings of supporters for the purpose of supervision. The goal of supervision meetings is to preserve the emotional and psychological well-being of supporters and to give them the necessary skills and knowledge which are required in realistic support situations. In these meetings, we discuss typical topics which arise in communication, as well as typical challenges in texting and emotional aspects of communication and support giving. These topics can be discussed in groups or individually with a professional.

    Monitoring includes regular meetings of supporters with a project coordinator and discussion of important practical matters which impact the quality of peer support. It entails providing logistic support to supporters, monitoring the frequency, duration, and type of given support, overseeing the schedule, individual engagement and the workload of supporters, as well as the frequency of follow-up support, and providing additional training and supervision.

About the author

Administrator administrator