A Letter to Parents on Transitioning from Pediatric to Adult Care in Hemophilia: Reporting from the WFH Congress

Dear Parents,

You need to understand that you are taking on a completely new role in your child’s life. You will no longer be controlling their hemophilia for them. It’s time to let go of the reigns and make sure they are prepared to live an independent life.
You, more than anyone else, understand what “normal” is for your teen and know the warning signs of their illness. You’re used to taking care of them in every aspect of the word. But now when they need assistance, your job is to inform your child about their options for handling the issue, not to control it for them.

Remember, you’ve guided them for years. Now it’s up to them to make their own decisions. Trust in the fact that you’ve supplied them with the knowledge and skills to make the right choices in regard to their illness.

You’ll still be there to support and guide them, just in a different way.

Here are some ways to help your child in the transition:

  • Consider sending your child to a hemophilia camp. There, among other things, they will learn how to infuse themselves. This teaches them independence and self-esteem along with providing them more freedom in their daily life.
  • Sit your child closest to the doctor to encourage direct interaction between them and their physician.
  • Ask the doctor before the appointment to please address questions to your child, not to you.
  • Consider not being in the treatment room for part of the appointment. Then afterword, ask your child to summarize went on. This will help to ensure your child has a firm grasp on their illness and the decisions they are making.
  • When your child begins to go to appointments on their own, encourage them to schedule the appointment for later in the day. This will help to ensure your child will make it there on time.
  • Don’t force conversation on your child, but encourage an open dialogue by remaining receptive to their needs, wishes, and desires as they make this transition and discover what works best for them.
Ideally, the transition from pediatric to adult care should start at the time of diagnosis. Your child is not going to be a child forever. You need to accept this fact and make sure you are preparing your child for the best possible, independent future.

The website www.gottransition.org provides resources for families, caregivers, patients, and physicians going through this period of change. Remember, this isn’t an issue unique to hemophilia. Reach out to others who are going through the same thing. Ask for advice; ask for help, share support, and remember- it’ll all be worth it in the end.

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