Before You Push the Bird Out of the Nest 

Understanding the importance of guiding independence and adhering to treatment in adolescents

By Emily A. Roush, HFA Staff Writer

Navigating adolescence is a roller coaster of developmental, social, emotional, and physical changes. And for teens with chronic health conditions like bleeding disorders, the transition from depending on parents and caregivers to being independent during all those changes can make it even harder. 

Hemophilia Federation of America’s latest educational initiative, Supporting Health and Independence in Adolescence, will help families empower adolescents with bleeding disorders to take ownership of their care, setting the stage for healthier, more confident adults. Through a cooperative agreement with the Centers for Disease Control and Prevention (CDC), the initiative, which is anticipated to launch fully in the fall of 2025, was a collaboration with pediatric neuropsychologist Dr. Juliana Bloom and camp/recreational specialist Anne Henningfield. 

It features a set of e-learning courses on HFA’s Learning Central—one for adolescents and another for parents or caregivers—plus live, instructor-led or facilitated virtual learning sessions and instruction guides or journals. HFA’s courses were built on findings from community surveys, which revealed that many caregivers struggle with knowing when and how to begin handing over the reins of their child’s care, and they recognize teens struggle to adhere to their treatment at that age.

The courses emphasize small steps toward independence. For example, adolescents are encouraged to track their infusions, recognize early signs of bleeds, and understand the importance of treatment adherence. Meanwhile, caregivers receive tools to support this transition, including education on adolescence’s developmental, social, and mental aspects and strategies for gradually shifting responsibilities without overwhelming the teen.

In the winter of 2024, HFA piloted the program with five families in the bleeding disorders community with adolescent boys ranging from 10 to 14 years old and one of their primary caregivers or parents. The pilot consisted of three live Zoom meetings, each followed by self-paced lessons in the e-learning platform, creating a flexible and interactive environment. Each participant received a packet in the mail with a treatment calendar, guided journal, stickers, and age-appropriate educational materials.

Nick Vosburg and his son Trent (hemophilia A), who participated in the pilot, found the course transformative. It gave them a framework to start conversations and a way to practice real-life scenarios. It helped Trent feel more confident, and Nick felt comfortable letting him take the lead.

“I found the course very helpful, not just with my 11-year-old son with a bleeding disorder but my oldest son with some developmental delays, even though he is an adult (23),” said Nick Vosburg, a parent participant. “I feel like I have more tools to introduce to him to help him navigate his adult challenges.” 

Developmental Considerations

Bleeding disorders, including hemophilia and von Willebrand disease, require consistent and sometimes complex treatment routines. For many families, caregiving responsibilities are heavily parent-led, especially during early childhood. However, as children enter adolescence—a critical development period—it’s essential to shift responsibility toward the teen.

Many developmental shifts mark adolescence. Physically, teens are proliferating and experiencing puberty. Cognitively, they begin developing more advanced reasoning skills, but impulse control and risk assessment are still under construction due to the gradual maturation of the prefrontal cortex.

Socially and emotionally, teens crave peer acceptance and may feel embarrassment or resentment about being “different” due to a medical condition. This can lead to resistance to treatment routines, especially if they interfere with social activities or self-image.

Recognizing these challenges, the HFA courses were designed to align with these stages of development. It offers targeted resources that match the teen’s cognitive and emotional readiness.

Dr. Bloom’s role in the course was to guide families through understanding these developmental dynamics. Her background in both neuropsychology and parenting a child with a chronic illness (not a bleeding disorder, however) offered valuable insight into what teens are capable of—and how to help them get there. 

Henningfield, with Beyond Recreation, provided valuable insight into the teen’s perspective from her experience leading camps and sessions for children with bleeding disorders. With her expertise and creative and relevant illustrations created by a Marvel Comics illustrator, the kids’ course provides a fun and interactive way to learn how to adhere to treatments and care for their own hands.

Looking Ahead

While the pilot program focused on boys ages 10 to 14, future versions of the course will include course updates and material resources unique to the challenges of girls with bleeding disorders, such as the inclusion of female-specific aspects like menstruation. Other updates to the course, based on pilot participant feedback, will include content tailored to different developmental stages. Recognizing that “one size fits all” doesn’t work in adolescence, HFA plans to allow families to choose course paths and receive course materials based on their child’s developmental level, not just age.

Another lesson from the pilot: live Zoom sessions were challenging to coordinate for busy families, so the updated course will integrate Dr. Bloom’s insights directly into the online platform, making it more accessible to a broader audience, while also offering an occasional live, instructor-led option during set times of the year. (Watch HFA’s social media for announcements of live lessons.)

As families prepare to “push the bird out of the nest,” programs like this help ensure a smoother landing. By nurturing independence in teens with bleeding disorders, we’re not only supporting their medical well-being—we’re empowering a new generation to navigate their bleeding disorder with confidence in managing their health.

For more information about the course and updates on its public release, visit HFA’s Learning Central. 

This project is supported by cooperative agreement DD000008 from the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services (HHS) as part of an annual financial assistance award totaling $320,000, with 100 percent funded by CDC/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by CDC/HHS, or the U.S. Government.