A guide for living with hemophilia through different life stages
Moving toward independence: 16-25 years
Self-empowerment, the teen years, and beyond
Let’s face it—teenagers often think they know it all. But by the time tweens become teens, they may know as much about hemophilia as their parents, and they may already have started to manage their own treatment by self-infusing.
Communication between teens and adults can become challenging, but it is crucial for parents to demonstrate their strength and support to their children. A little understanding can go a long way. It may be helpful to keep in mind that teens:
- Are trying to figure out who they are and what they want to do with their lives
- May wish to visit health care providers on their own and speak privately with their medical team
- May have concerns that friends will not understand their factor treatment needs and/or will tease them for not participating in all of their activities
- Will likely go through a stage where they want to experience risky behavior because they feel nothing can happen to them
- When you notice signs of growing self-reliance in your teenager, take it as an opportunity for you to discuss future goals. Talk to your teen about how current choices may either assist or interfere with reaching those goals.
Communicating with your teen
The teenage years present a number of obstacles when it comes to communication. Teens can be stubborn, self-involved, and unwilling to discuss things that might be bothering them. This time can also be incredibly frustrating for parents and caregivers since all you want is to have a productive discussion and better understand what your child may be going through.
The following approaches may help you when communicating with your teen or young adult:
- Express empathy. It’s important for your teen to understand that you’re listening to them, and not judging
- Support self-efficacy and self-esteem. Make sure your child feels confident with whatever decisions they may be making. Positive reinforcement is the key here
- Roll with resistance. Help your child understand that a productive conversation often includes issues where not all parties are in agreement. It’s important they learn to not let these disagreements lead to a heated confrontation
- Explore differences. Highlighting a child’s negative behavior may seem like an easy way to start a fight, but it’s something that can be used to advance the discussion. Your child needs to acknowledge their behavior in order to take steps to correct whatever may need correcting
- Ask open-ended questions. Questions that go beyond a simple “yes” or “no” can help start productive discussions and allow your child to open up and really let you in to what they’re feeling or thinking
- Recognize strengths. When dealing with teens, providing positive feedback is a key to helping them recognize their own strengths
- Summarize and move on. Don’t dwell. It’s best to move from one point to the next
Hemophilia college checklist
Congratulations. Your child is now on their way to college. Below are some things to keep in mind as you help them prepare for this step toward independence:
Local chapter and HTC
It’s a good idea to locate a chapter and HTC near your child’s school that they can visit for treatment, support, and socializing.
The person in your care is going to be in close quarters with their roommates, so making sure they have a conversation with their roommates about their hemophilia prior to the beginning of the school year might be a good idea. This way, your child’s roommates won’t get scared when they see him or her infusing.
Medical alert bracelet
Impress upon the person in your care the importance of carrying or wearing a medical identifier at all times. A medical bracelet, for example, might not be bling, but it can be a good icebreaker, believe it or not.
Factor cannot be shipped to PO Boxes. If your child self-infuses, arrange for a shipping address at his or her school or use a nearby family member or friend’s house or apartment address. You or your child should talk to the health department at their school to find out if factor can be shipped directly to their school address.