According to statistics from the World Health Organization, oncological diseases are the leading cause of child mortality in the world. Unfortunately, children are not immune from other, very different diseases: congenital and acquired, incurable and amenable to drug control. And any such diagnosis can be difficult to accept.
We have already talked about how to support a loved one during a serious illness - and now we will consider the situation in which the parents of underage patients find themselves, and the tasks they have to face. Firstly, you need to tell the child that he is seriously ill and, perhaps, he will not be cured, and secondly, to provide him with the necessary support. About how to do all this, we were told by experts: surgeon-oncologist of N.N. NN Petrova Maksim Kotov, oncology psychologist and director of the service for free help for cancer patients "Clear Morning" Olga Goldman, medical psychologist and chairman of the Non-Commercial Charitable Foundation Svetlana Izambayeva and leading psychologist at the Children Are Waiting Charitable Foundation Tatyana Dorofeeva.
Text: Irina Kuzmicheva
Defeat your own fear first
In this situation, emotional help is needed not only for the child, but also for the parents. “As soon as it becomes known about the diagnosis, the phase of emotional alienation may begin in relatives - a mechanism of psychological defense against terrible shocks,” says Olga Goldman. Do not blame yourself for the sudden "indifference" - this is a natural reaction of the psyche. Try to involve loved ones in caring for the child and do not forget about yourself. Before talking to a child, Svetlana Izambaeva recommends talking to a psychologist herself in order to work through feelings of guilt and fear and go through all the stages of adaptation to the situation: denial, anger, bargaining, depression and, finally, acceptance.
Don't hide the truth
Some parents try to hide the truth from the child, because they are afraid that he will be isolated in school or kindergarten. Others are afraid to inflict psychological trauma on the little patient. For others, to announce the diagnosis means to admit their own powerlessness in the face of the disease. But children who are not told what is really going on often feel anxious and can imagine the worst.
If a child recently lost someone close to him due to a similar disease, it makes no sense to convince him that cancer can be treated very simply. “We can say that his body is young and strong, that every year scientists invent new effective drugs, that doctors and family are doing everything possible to make him recover as soon as possible,” says Goldman. Truthful and timely information will help your child to be less afraid. No matter how difficult it is, try to speak calmly: children keenly feel the state of their parents. If you know the parents of other child patients, find out how they handled this conversation.
Tell your child about the illness yourself
When parents find out about the child's diagnosis, they are faced with the question of who and how will tell him everything. In accordance with the current legislation of the Russian Federation, children under the age of fifteen have the right to report such news only in the presence of their parents or legal representatives. Patients over this age can communicate with the attending physician without intermediaries.
The best option, Maxim Kotov, considers a doctor's conversation with the parents and the child at the same time, provided that there is complete trust between all the participants. An open discussion will help develop a common attitude towards the problem and think about further actions. “In any case, the support of loved ones is necessary. It is necessary that there is always a person next to the child with whom he can discuss his feelings and ask exciting questions,”adds Dorofeeva.
State the diagnosis clearly
Perhaps the child has already heard about the disease, but from a lack of reliable information, he can assume the worst. The name is just a word, in itself there is nothing terrible, so do not be afraid to name the disease directly - be it cancer, HIV infection or something else. Many specialists will be involved in the treatment process, and not all of them will avoid an accurate diagnosis with a child - it is better to prepare him in advance by explaining medical terms. Young children will understand better if they show exactly where the disease is in the body, rather than using abstract descriptions.
Another difficulty is that sometimes even doctors cannot accurately predict the outcome of treatment. Therefore, it is optimal to talk about the current state so that the child has objective information at the time of the conversation, and not promise a speedy recovery or prepare prematurely for the worst scenario.
Consider the age of the child
Olga Goldman believes that children of different ages need information in different volumes. The child does not have to tell absolutely everything at once: it may be difficult for him to comprehend many new nuances, so it is better to distribute the details over several conversations.
Kotov offers to indicate in advance the amount of information that you will share with your child. Ask if he is ready to listen now about his diagnosis and what he wants to know. Taking into account the child's age, talk about the treatment process, side effects, tell how new circumstances can affect his daily routine, well-being, appearance. Having a sufficient amount of knowledge, children more easily agree to take medications and undergo not always pleasant procedures.
For babies under three years old, it is important that parents just be there, soothe and distract during and after medical procedures. Older children need to be explained that treatment is not very pleasant, and it is completely normal to be afraid of examinations, injections, and surgery. It is better for schoolchildren to talk about the disease and treatment in more detail - all the more unlikely to hide the truth from a teenager who actively uses the Internet. It is better that the source of information were the parents who studied the issue and the competent doctors.
Speak an accessible language
Maxim Kotov advises to speak as simply as possible, in short phrases, each sentence should contain no more than one thought. Pauses are important to help the child reflect on what he has heard and ask questions. Explain what doctors will do to protect your child and fight his illness.
Unfortunately, there are no universal phrases for emergency situations. However, according to Goldman, it is better to say “I'm with you” than “Hold on”; “It's okay to be afraid” instead of “Be brave” and “I really want to help you” instead of “Everything will be fine”. Contact support is also important: hold the hand tightly, hug gently - this gives a feeling of security and reduces anxiety, sadness and anger.
Use drawings, games, fairy tales
Think in what form it is easier for your child to perceive information. For some children, to get the answers they need and to feel better, it is enough to talk with an attentive and caring adult. Others more easily perceive information through drawing, music or play - often during play, children offer their own ways of solving and helping themselves. If the child is not afraid of the diagnosis itself, but of specific procedures, work out potentially stressful situations on the dolls. Play together as many times as the child needs to understand the situation. Think about how your child usually copes with difficulties, and resort to tried and tested methods.
Answer the questions
Be open to communication with your child. Tell him that he can ask you any questions that will help you understand what is on his mind. “Unexpected questions are a way for children to experience fear and anxiety. Children ask questions when mom or dad withdraws into themselves.This is how the child brings them back to life and to himself,”explains Tatyana Dorofeeva. Any joint action will make the situation a little more bearable - so be prepared to clarify a lot and try to answer with language that the child understands. If you don’t know the answer to a question, don’t panic, don’t walk away from the conversation and don’t lie. It is enough to answer: “You asked a very interesting question. I do not know the exact answer, but together we can find it from a specialist."
Do not blame yourself and the child for the illness
Apart from the disease, children can come up with their own explanations for the disease - and this can be worse than reality. Children tend to blame themselves for many problems, so it is important to make it clear that no one is to blame for the disease. Explain to your child that the reason for what is happening is not his behavior, thoughts, school grades. If you provide your child with truthful and complete (if possible) information, there is less chance that he will view the illness as punishment for bad behavior. It is also important not to blame yourself or lament that you didn’t save your child, especially in his presence. Self-flagellation and the search for the culprit will not help the treatment - but it will definitely prevent you from creating a calm atmosphere at home.
Let your child be afraid and angry.
Olga Goldman says that everyone reacts differently to illness: you can feel anger, fear, grief, guilt. Naturally, a long hospital stay and numerous medical procedures scare the child. Let him or her know that any emotion is important and can be expressed openly. Explain that it is normal to be afraid or angry - mood can change and there are no “right” or “wrong” feelings. If you feel that the child is not ready to talk to you, do not insist. Explain that all exciting points can be discussed later, that you are always open to conversation and ready to listen.
At the same time, it is important to closely monitor the emotional state of the child. It is normal to be out of sorts during the fight against illness, but if apathy, anxiety, sleep disturbances or tearfulness become constant companions of the child, this can be a symptom of depression. In this case, seek professional help - to start with a psychologist.
Talk about death
Until a certain age, children understand the concept of death differently than adults. Between the ages of four and seven, they consider death unlikely and do not recognize it as something that could happen to them. In addition, at this age, there is often no idea of the concept of "forever". Often even a direct question from a child, "Am I dying?" may not mean that he understands what is happening.
At school age, the child begins to understand the irreversibility of his own death. Whether he will be able to cope with his feelings depends both on his emotional maturity and on the reactions and behavior of significant adults. Try to respond calmly, gently, and honestly: “This is a serious illness. Doctors are now giving treatment that has helped other children. We will do our best to help you recover. " If the disease doesn't respond to treatment, be honest. Telling your child that the treatment isn't working is incredibly difficult, but truthful conversation will help you accept the situation.
Take care of yourself
In caring for a seriously ill child, it seems right to focus exclusively on him, and pause your needs. But the patient's parents and other relatives are also hard, they need strength to cope with several tasks. To avoid burnout, distract yourself and reduce stress, try to take care of yourself: eat a balanced diet, find time for good sleep, be outdoors more often, add activity (any sport or just long walks will do). And do not hesitate to ask for help from relatives, friends, volunteers, psychologists and other professionals.