As a parent, you can support your child by making sure you that you clearly understand their chronic condition and what adaptations, accommodations and treatments they may need.
Share information with your child
Once you understand your child’s condition clearly, explain it to your child in language suitable for their age and level of understanding. Review and update this information with your child as they get older and can better understand their chronic condition. Being honest and accurate, with age-appropriate level of detail, helps prevent your child from misunderstanding their condition or imagining the worst possible outcome.
Help your child tell others about their condition
As a parent of a child with a chronic condition, one of your roles is to help your child start managing their condition on their own. It is important to work with your child to help them develop the skills they need to care for themselves and ask for help when they need it.
As a first step, you can help your child come up with one to three sentences to describe their chronic condition, including what it means and what they need. This is called a health summary. One your child is comfortable with the summary, they can memorize it for when they need to advocate (speak up) for themselves with teachers and other adults.
Over time, your child’s condition might affect their attendance at school or their time with friends. It is helpful to come up with an answer when other children or peers get curious about your child’s absence or particular needs. How much your child wants to share is up to them. They can keep their health information private if they want to.
Support your child with hospital appointments
Your child’s level of involvement in their own medical appointments will partly depend on their age at diagnosis. But, even if they are young, encourage your child to be as involved as they can for their stage of development. For instance, give them a chance to ask and answer questions about their condition if they can. This will help teach them the skills they need to advocate for themselves later on.
Speak to your child’s healthcare team if you have concerns about:
- any emotional or behavioural symptoms, such as irritability or withdrawal, alongside a physical condition
- any physical symptoms, such as recurring headaches or stomach aches, that appear alongside a mental health condition.
Communicate with your child
Keep open communication with your child to help them develop and maintain positive coping strategies, identify their goals and understand their health.
What is most important to your child might be quite different from what is most important to you or your child’s healthcare team. Always consider what matters to your child.
