How to Face a Process of Serious Disease with Children
“Now is no time to think of what you do not have.
Think of what you can do with that there is”
In the field of the legal protection of the privacy of the patient and the ability to have the details to be transmitted to other people (minors in this case) associated with the ill person; the first issue to take into account focuses on assessing whether the person affected by a poor health prognosis is capable, conscientious and competent; in which case we will have to know his/her opinion about sharing such information, which legally belongs to him/her.
In the case of showing a positive attitude towards sharing this information, it is convenient to clarify how, when, where, who … will inform about his/her status. From my point of view is very important that the ill person owns his/her information and decides to whom it is transmitted. In our culture, we usually understand that the family “should know”, and the information flows without telling the affected party and this is not correct. It is customary, to communicate the fatal diagnosis or prognosis to the family, before and even in place of the person concerned. The criterion is that they, who know him/her well, and even live with him/her, will know how and when to convey “the news”.
Therefore we can find ourselves in two situations, in favor and oppositional:
- With an oppositional affected party, I think that from a legal point of view, we can only provide vague information that may “prepare” the minors. “Uncle Albert is been ill for some time now, and he will be spending a few days in the hospital to see what they do. He may even have surgery. I think he is facing some time needing a lot of care …”
- If the affected party agrees on sharing the information, and in the case of children, we’ll have to go back to daily routines after addressing the diagnosis of a disease, because they get more affected than adults when leaving their routines. The reorganization of daily activities is essential to bring stability to their psychological life so it is normally recommended to resume school activities, return home and to their regular schedules as soon as possible.
When informing children we should be especially careful not to use confusing or complex vocabulary, as their level of verbal comprehension is less than that of an adult, and misinterpretations can lead to major errors. Technicalities should never be used, it is always better to make things clear, than creating the possibility of a misunderstanding, even if we don’t like what we have to tell them.
Never lie. This applies to both children and adults but it should be emphasized in the case of children, since many believe that a “white lie” can be beneficial. Children deserve to know the truth as much as adults.
It is desirable to have a greater stimulation of emotionality of the child, as it is often harder for them to talk about themselves spontaneously. So it is advisable to ask and guide the conversation to the events, so they can express their emotions, since they are aware of what is happening around them and also have the need to share the joy and sadness as much or more than adults. So we should not exclude them from the bad news or the grieving process, so they do not feel isolated and can develop misconceptions of what is happening.
In this process it can be helpful to pay attention to nonverbal communication, which is especially noticeable and easy to interpret in children. Likewise, we must sit down in order to be facing them, so we can establish a more empathic communication, also noticing the tone and volume of our voice. Children are scared of adults shouting or using a tone of voice that is too strong, so it is especially interesting to find a quiet place to talk to a child about these issues.
Another point to consider is related to the physical contact, and many children (especially the younger ones) appreciate it as a way to a secure and reassuring communication. However, we should pay attention to the body language, and interpret their needs. We can start with a support shoulder or forearm, and if they want, get to a hug.
In all cases, it is important to serve as a model of reference for children so they can trust and feel closeness and security. That’s why we should not promise the impossible or give false hope. If it is demonstrated that this was false, it is easy to lose confidence, being very negative and uncooperative; plus it will cause more harm.
Possible reactions by age at diagnosis and / or experience of a disease
Between 0/2 years old:
They have little ability to relate causes to effects and learn from past experiences. There is a tendency to react as their caregivers do (reflex reaction). Reflex reactions:
- Easily irritated, cry more often, separation anxiety (fear reactions when separated from their parents) – Recreation of critical situation throughout games, insomnia and regressive behavior (fear of the dark when they were not before, they want to be fed when they were eating alone before…). .
Between 3/5 years old:
Still they do not understand the concept of permanent loss. Their greatest fears is to be abandoned, and they feel helpless. Reflex reactions:
- Separation anxiety, increased activity – Emergence of tics, stuttering or silence – Nightmares and night terrors – Recreation of the critical situation throughout games – Regressive behavior, Defiant conduct (desire to take the opposite).
Between 6/11 years old:
They understand the concept of permanent loss and the consequences of a crisis situation. They may worry about the details of the event, wanting to talk about this on a recurring basis. Reactions:
- Increase or decrease of daily activity – Separation anxiety – Emergence of tics, stuttering or silence – Nightmares and night terrors – Regressive behavior – Defiant conduct – Difficulty to concentrate – Low school performance – Refusal to go to school – Somatic complaints as headaches or stomachache – Deeply concerned about the involvement of caregivers – Concern for other victims and their families.
Between 12/18 years old:
They show need to demonstrate knowledge and experience but also feel that their peers share their fears and anxieties. Reactions:
- Shyness – Hostility (especially siblings) – Sleep disturbances – disturbances of appetite – Aggression (to themselves and to their environment) – Somatic Symptoms – School failure
General objectives that can prevent the development of complications after the diagnosis of illness or death of a loved one, refer to:
– Informing about grief, its manifestations and its duration.
– Talking about the circumstances of death.
– Speaking of the history of the lost relationship and revise both its positives and negatives.
– Reinforcing existing adaptive elements.
– Promoting the expression of emotions as well as the customs and rituals.
– To normalize the expression of positive emotions and to exonerate for experiencing them (feeling good, laughing, enjoying, etc. are not opposed to loving someone who is no longer present).
– To identify the needs, difficulties, concerns and emotions.
-To provide “practical help” and to promote their immediate environment helps too.
– To stimulate confronting the new reality we are living (including any change in the status or role).
– To promote managing concurrent life stressors. (Psychosocial factors that are affected in these situations and may be biological in nature – associated diseases, hospitalization, accidents … – and social – poverty, unemployment, loss of housing … -)
– To increase the response of social environment support. Throughout the process it is important to help maintaining relationships that are a source of real affection. Every moment can have different relational needs involving various activities. Thus, it could reinforce the idea that our loved ones will feel good knowing what is it we need to share with them.
These aspects are considered important for adults to help children in a difficult situation. If we really want our children to see us as a support, we should note on top of what we’ve commented on so far, the importance of promoting self-care to prevent burnout (caretaker burnout syndrome) and to be able to maintain this attitude during the process.
Keep in mind that the adults find themselves in the dual situation of suffering their own emotional process, while dealing with the one of the children; so we recommend using breathing and relaxation techniques, as well as related to the management of emotions. Finally it is recommended not to neglect nutrition, to exercise, rest, and allocate some time to social relations. We also remind to value the aid resources that are available, for example in the hospital, where qualified professionals are used to dealing with these situations.
Author: Eduardo García-Toledano, Ph.D.
World Rare Disorders Foundation
Childhood Cancer Foundation