How to talk to girls and boys about their illness?
How do I know when is the right time to talk to my son or daughter about their heart disease?
This question causes stress for many parents of patients with complex congenital heart disease.
Although there is no perfect recipe or set of foolproof steps, it is important to consider factors such as the baby's age and level of cognitive and emotional maturity.
Before talking to your daughter or son:
Before having the conversation, you can ask yourself the following questions:
- What does my son or daughter know about his illness?
- What is important for you to know right now?
- What tools (drawings, stories, photos, tales, etc.) am I going to use as a support to explain?
- How do I prepare to answer questions my son or daughter may have?
- What emotions do I experience when thinking about this conversation?
During the conversation:
- It offers direct and concrete information. With very young children (under 5 years old), stories and toys should be used to accompany the information. Explanations should be very simple. For example; "You must drink this syrup so that your heart does not get so tired".
- Position yourself in such a way that there is bodily closeness with your daughter or son and that you can look at their face while you speak.
- Check that the information has been transmitted successfully, you can support yourself with questions: can you tell me why you should take the syrup?
- Allow your daughter or son to ask questions and answer honestly and calmly. If you don't have the answer, tell the truth: “I don't know that, child, we'll ask the doctor at the next appointment, do you think?
- Promotes the expression of emotions, how do you feel about what I just told you? This can be facilitated by talking about your own feelings: “When they told me I felt a little scared, feeling scared is normal”.
- Leave the door of dialogue open: "whenever you have questions about this, we can talk".
after the conversation:
- Take some time to evaluate the result. What did you manage to communicate? How was the information received?
- Write down the questions that arose, especially those that should be consulted with health professionals.
- Look for other resources that can support future conversations: stories, guides, toys, etc.
- Monitor the emotional state of your daughter or son: talking about the disease is not easy. You may observe emotional reactions of fear, anguish, guilt, sadness, or shame. It is important that you talk to your daughter or son about these emotions and that you find spaces to express them as a family.
Other tips:
- Avoid trying to tackle everything at once; Several conversations on the subject will be necessary.
- It may happen that your daughter or son does not want to talk. Give it time, it is complex to process the information.
- Reaffirm your availability to talk about the subject.
- Talk to other people about your feelings as a parent by having these conversations.
