If you have a child with a bleeding disorder, the teen years can be challenging. It’s a time when adolescents are naturally looking to separate themselves from their parents and take on more responsibility. But after years of being so involved in managing your child’s bleeding disorder, it can be hard to step back and give him or her the freedom and independence teens need as they grow toward adulthood.
How can you help teens with bleeding disorders become more independent and empower them to take charge of their health? Here are some suggestions:
1. Hand over all treatment responsibilities
Ideally, a teenager will have already taken one of the biggest steps toward independence, which is learning how to self-infuse. But in addition to that important milestone, teens should be handling a lot of the other aspects of their treatment, including knowing the details of their medication, being responsible for their own treatment log and eventually taking on the task of ordering their medication.
2. Stay positive
Whether it’s helping your child transition to managing his or her medical appointments schedule, recognize the signs of a bleed, or cope with a medical emergency, your attitude can make all the difference.
“Let your child know that you are confident that they can take on these new responsibilities, and that you’re there to consult or help in any way that they might need,” says Mary Alvord, PhD, a child clinical psychologist in private practice in Rockville and Chevy Chase, Maryland.
What’s important is not only what you say, says Alvord, but even more so, what you do. “You can model that something is challenging but also problem-solve out loud about how you will approach the issue,” she says.
“This approach can counter those ‘I can’t’ thoughts that teens can be susceptible to, and provide the powerful message to your teen that, they can try, and they can do it, with help,” says Alvord, author of Conquer Negative Thinking for Teens.
3. Teach teens to advocate for themselves
Encourage your child to start taking a more active role in his or her own healthcare by speaking up and asking questions of hemophilia treatment center (HTC) team members or his or her primary care doctor. Once children are high school-aged, they should be able to make their own doctor’s appointments and order their own factor and infusion supplies.
The more people can advocate for themselves and learn to communicate what they need, the more they feel in control of their healthcare, says Alvord. “We also know that being proactive and asking for help are strengths that factor into resilience,” she says.
According to a recent study, teens who have a medical condition may be better prepared to transition from pediatric care to adult care while taking charge of their own healthcare than teens who don’t have a medical issue. When psychologists at the University of Georgia studied 494 older adolescent and young adult patients, they found that those with a chronic condition were more self-supporting in completing health-related tasks and were less reliant on input from their parents.
4. Sign up for camp
A week at overnight camp is when many adolescents with bleeding disorders learn to take a bigger role in managing their own health. Not only do they become more comfortable and confident with self-infusing, they also gain independence by being away from home for several days. Many kids who are active in camp go from being campers to counselors, which teaches them responsibility and leadership skills. There are more than 50 overnight summer camps in 37 states for young people with bleeding disorders, and the cost is usually covered by your local chapter. It’s not too early to start planning for next summer. Find a camp near you by contacting your local chapter or HTC, or search NHF’s online camp locator< https://www.hemophilia.org/Community-Resources/Locate-a-Camp-Near-You-0>.
5. Encourage your teen to connect with other young adults
Adolescents need role models and mentors, and talking to other teens and young adults who have bleeding disorders can help them feel much more comfortable about their changing role.
You can help your child connect with young adults in your area by contacting your local NHF chapter to discover what programs are available. Participation in these events can help teens learn to talk much more openly and appropriately about their disorder with friends, and also be more likely to act responsibly and take ownership of their healthcare.