Chronic illnesses: between fears and silence – how to tell children their diagnosis

These findings suggest a distinction: a child may want explanations about a procedure whilst relying on adults to make difficult decisions. Listening to them and keeping them informed allows us to recognise their role, whilst continuing to provide the support they need. As this review focuses on paediatric oncology, its conclusions cannot be automatically extended to all chronic illnesses.

The psychodynamic perspective considers the emotional significance that the illness takes on for the child and within the relationship with their parents. A painful examination may be experienced as a punishment; the need for treatment may give rise to a fear of being fragile or different. These are possibilities to be explored through active listening, without attributing to the child fantasies that they have not expressed.

Questions such as ‘What do you think is happening?’ help to understand their interpretation of the situation. If the idea emerges that they have fallen ill because of something they have done, this needs to be addressed explicitly: explaining how an organ works may not dispel the sense of guilt. Communication thus takes on a therapeutic role: it allows them to link what is happening in their body to thoughts and emotions that can be shared.

One theoretical framework is the concept of emotional containment developed by Bion. The adult takes on board an experience that the child finds difficult to tolerate and helps them to make sense of it. Applied to discussions about illness, this concept encourages us to recognise fear and put it into words, whilst maintaining a reliable presence. It is a clinical interpretation of the relationship, distinct from the findings of studies on communication.

For example, when a child is afraid of a medical procedure, a parent might say: ‘I understand why you’re scared. Let’s ask the doctor together what’s going to happen and how we can help you.’ Being there for the child makes it possible to talk about things that cannot be resolved straight away.

Silence, too, can serve an emotional purpose. ‘I don’t want them to know’ may express a desire to protect the child’s peace of mind, but it may also reflect a difficulty – not always a conscious one – in dealing with one’s own distress. From this perspective, avoiding the subject can offer the adult temporary protection from a painful reality. This is a hypothesis to be explored within each individual family, without judging or automatically attributing meanings to the behaviour.

Psychological support can help parents distinguish their own fears from their child’s questions. With the support of the team, they can find sincere words that offer emotional comfort. This then enables the child to express fear, anger or sadness without having to worry about shielding the adult from their emotions.

In their review published in *The Lancet* in 2019 on life-threatening conditions, Stein and colleagues propose communication principles developed, in part, through discussions amongst experts. The guidelines include listening to what the child already knows, using language appropriate to their developmental stage, and providing honest information in amounts they can take in.

In conversation, this means explaining one aspect at a time, pausing and asking the child to explain what they have understood. Simply repeating the name of an illness does not necessarily mean they understand its consequences. It may be more helpful to check whether they know why they are taking medicine or what will happen at their next appointment.

Timing is also important. The child may want to stop, change the subject or resume the conversation later. Adults can acknowledge what they do not yet know, avoiding unrealistic promises and indicating when they will be able to provide further information.

These principles stem from situations involving serious illness: they can also guide dialogue in cases of chronic illness, adapting the content and timing to the diagnosis. A stable condition, for example, raises different questions about the future than those posed by an illness with an uncertain prognosis.

Communication needs to be continued as the child grows up. An explanation that is adequate at the age of six may leave many questions unanswered during adolescence, when the desire to have a say in decisions about one’s own life increases.

The review by Chen and colleagues (2025), comprising 23 articles on chronic illnesses in adolescence, distinguishes between avoidant, intrusive and open communication styles. In practical terms, dialogue can break down when the illness becomes a topic to be avoided, or when the conversation is dominated by adult control. Open communication, on the other hand, allows space for the young person’s concerns and perspective.

The work highlights the importance of both individuals’ psychological well-being, their parents’ understanding of the condition, and social support. Difficulties with communication must therefore be understood within the family context: providing information to parents and offering them emotional support is part of the work on communication.

Supporting a child means making this process of coming to terms with the situation possible over time. Protection does not end when the illness is given a name: it continues through the willingness of adults to listen to what that name means to the child.

*Head of the Paediatric Hospital Psychology Service at the Meyer IRCCS University Hospital in Florence