The communication of the diagnosis of a serious and disabling pathology is configured as a stressful and potentially traumatic event for the individual who is affected, but not only.
This event, in fact, has a significant impact on the functioning of the entire family of the person, undermining its structure, modifying its roles, structure and relational dynamics. This has possible psychological and psychopathological consequences for all members. When the patient is also a parent, things get even more complicated.
Some parents, if they get sick, choose not to tell their children about their illness. The reasons behind this decision can be multiple and include:
- trying to protect them from painful emotions
- the difficulty of receiving difficult questions about sickness and death
- the difficulty in contacting the guilt that comes from the idea of talking to them about certain topics or not being adequate enough parents because they are sick
- the fear of being vulnerable and frightening them
- the belief that children could not understand
- the attempt to maintain a ‘calm’ climate so as not to disturb them
However, choosing not to communicate always implies taking an enormous personal effort to keep this ‘secret’ .
Adequate communication to children
On the contrary, adequate communication in this sense allows important advantages. These include the reduction of anxiety levels experienced and the improvement of communication in the family.
Furthermore, it allows to reduce the sense of isolation , loneliness and exclusion experienced by children when they perceive that something important (and probably serious) has occurred, but that parents do not want them to participate in this. In these cases it is often observed that children do not feel entitled to ask questions. They may feel distrust towards their parents (or towards the world of adults in general) or take on attitudes and behaviors of ‘hyper-responsibility’, up to a real reversal of roles for which they come to take care of the parent.
A proper communication also helps protect children from the guilt that comes from frequent tendency to take responsibility for the negative events that happen in the family.
The risks of non-communication
Also, not talking to them does not mean preventing them from perceiving that something important has changed. In this regard, children and young people generally tend to build their own theories about what may have happened, in order to make sense of the perceived changes.
Such theories may include even more frightening explanations and ‘fantasies’ than reality itself. For this, an adequate communication allows to reduce the fear experienced, which can reach very intense levels.
Not communicating can also make children think they are not important and make them contact deep feelings of loneliness that come from the feeling of having no one to talk to about their emotions. All of this can have important repercussions on their behavior , on the relationships they have with others and on their academic performance.
The methods of communication
Communicating your diagnosis to your children is certainly a complex, delicate process, and can make you feel a lot of fear. Furthermore, the decision to speak with them generally opens up further and difficult questions. For example: what and how much to say? How to tell? When?
Obviously, there is no way that can be suitable for everyone . There are, however, some general indications that can be useful in tackling this difficult process. First of all, it is absolutely legitimate and important that parents have the opportunity to take the time to think about what is happening to them and to prepare for communicating this to their children.
However, it may be useful not to wait too long. Both in order to avoid the possibility that the children independently acquire, or accidentally receive from other sources, information on the matter. Both because it is normal for children to perceive from adults the tension and emotions that inevitably derive from having faced certain diagnostic procedures and having received the diagnosis of a serious pathology.
What to tell the children
What to say? It is important to share an explanation that allows children to attribute meaning to what is happening and the inevitable changes, even routine ones, they will experience.
Generally, children and young people wish to receive information relating to the disease and treatment : for example, the name of the disease, its presumed causes, who is treating it and how it is treated, the effects of the therapies and its presumed evolution.
It may also be helpful to make it clear to them that they do not have to take care of their parents but that parents, as adults, have the resources to deal with this situation and it is not their job to take care of it.
The details of the information to be shared should be ‘calibrated’ on the basis of what the children want to know and ask about. Thus, it becomes important to pay attention to verbal and non-verbal communication signals, in order to adapt the communication to their reactions.
It can be useful to keep in mind that it is not necessary to share everything: let alone everything at once. But it is important that what is shared is real, while still instilling hope.
It may also be helpful to investigate what they know about this disease in order to correct any incorrect information. Furthermore, it is perfectly normal for children to ask questions that parents cannot answer. Again, being honest, and then answering, for example, simply “I don’t know” is entirely legitimate.
Eventually it can be considered how to find together the information requested or encourage them to talk to doctors or nurses. In addition, it can be important to discuss with other adults with whom your children interact, in order to share with them the information that your children have, so that children and young people can receive the same explanations from all the adults of reference.
How to say it
The best experts on how to talk to their children are the parents themselves. The choice of words to use and any support aids (stories, stories, videos, information booklets …) derives from age, degree of maturity and their personal characteristics.
When you have several children, it is generally useful to talk to them together , and then eventually consider studying them individually at a later time.
However, if you choose to speak to them separately, it is helpful not to spend too much time to prevent them from sharing information with each other without first receiving it from their parents.
It is important to choose a quiet place and time where children and teenagers can be free from distractions, remain attentive and feel free to ask questions and express their emotions.
In fact, good communication cannot ignore the possibility that they have the space to be able to freely express what they feel and think, and therefore their emotions and thoughts in relation to what has been communicated.
Also for this reason, adequate communication is to be considered a process that cannot be exhausted in a single moment: in this sense it is important over time to show openness and interest in the expression of new doubts, fears, worries or painful emotions.
Furthermore, it is important that children and young people understand that the emotions they feel (and that they see expressed by their parents), no matter how heavy or painful, are completely normal, make sense in the light of what is happening, are not dangerous and will pass. . And that for all these reasons it is completely normal to experience and express them : that you can accept them, rather than be afraid or feel wrong because you try them.
Obviously this process is not easy at all. The burden of a serious illness is already heavy in itself and leads to experiencing painful and intense emotions which, in some situations, can hinder the ability to also take care of the pain and needs of one’s children.
In this sense, the possibility of asking for help and support from one’s partner, family, friends, other significant figures or a professional becomes crucial in order to be supported in this difficult process.