involving your child in decision-making can help them better understand their condition and treatments, reduce their fears, and enhance their self-confidence.
You want the best for your children. But unfortunately, having a child with a rare or undiagnosed condition increases the number of medical tests and treatments your child must undergo. Although it may be challenging to relinquish control, involving your child in decision-making can help them better understand their condition and treatments, reduce their fears, and enhance their self-confidence. Continue reading to learn the medical community's views and ways you can involve your child in medical decisions.
Because children show different maturity levels, there are no guidelines on when children should become actively involved in the process. More mature minors will be better able to understand the immediate and future impact of a decision. As a parent, you are in the best position to determine your child’s development with regard to their decision-making competence.
Traditionally, healthcare decisions regarding children have been made exclusively by parents and physicians. More recently, increasing attention has been focused on ensuring that medical decisions are directed to the needs of the child rather than another person. Although not directly related to children with unique healthcare needs, vaccinations during the pandemic illuminated the issue of children having the autonomy to make healthcare decisions.
Ideally, children who can participate in healthcare decisions should be included in a partnership between their parents or guardians and physicians.
Information empowers your child. Sharing information with your child can help them understand their situation and make decisions about their medical options. Talk with your child to discover what they understand. Work with your child’s healthcare team to identify books to help them learn about and understand their condition.
Support networks encouraging families to connect may provide valuable advice on resources to help your child make decisions. For example, Facebook and other social media platforms have groups that allow families to connect. You can also be part of the conversation by following @ncats_nih_gov and @ORDR. In addition, the online international community for rare diseases, RareConnect, has created a global, multilingual community for undiagnosed conditions.
It’s essential that your child is present whenever possible for at least part of appointments concerning tests to identify their condition or treatments. You and the physicians should directly address your child in parts of the discussion at their level of understanding.
Appointments often include long, complex conversations, which can be overwhelming, especially for children. Sometimes, separating them into shorter, topic-specific meetings can be helpful. It’s an excellent way to give everyone involved more time to prepare.
Jotting down questions before appointments can be helpful for anyone, but is particularly a good practice to develop with children. Meeting with the doctor and trying to grasp all the information can be daunting, making it challenging to remember any specific questions you wanted to ask.
Everyone with cognitive ability, including children, should have the right to make decisions about their health, even if they're not old enough to be considered mature enough by the law. It's crucial that you convey this information clearly and consistently: Your child may have more knowledge than you or the doctor about their condition.
Whenever possible, encourage your child to participate in their healthcare decisions. You want your child to feel comfortable and confident when making healthcare decisions. It may take effort and patience at first, but it will help your child become more independent about managing their healthcare.
With you by their side to support and guide them, they can take a big step toward adulthood with you as a safety net. The more you can prepare your child by teaching them how to think through difficult situations, the better prepared they'll be when they're on their own in adulthood.
You can help us give hope to families waiting for a diagnosis. Through the generosity of donors, the Center for Rare Childhood Disorders (also known as the Center) provides genomic testing for families at no charge and continues its work to provide solutions and cures to families and their children. Your gift can help the dedicated team of researchers at the Center continue their efforts to find answers and develop treatments.