Perceived barriers and facilitators for physical activity in youth and young adults living with hemophilia

Hemophilia is a rare hereditary bleeding disorder characterized by a deficiency of clotting factor, resulting in an increased bleeding tendency. Historically, people living with hemophilia were advised to avoid physical activity due to injury risk. Today, improved treatment options enable individuals with hemophilia to engage in more self-determined lifestyles. Moreover, medical perspectives on physical activity have shifted, underlining the benefits of regular engagement in physical activity for physical and mental health. Nevertheless, youth and young adults living with hemophilia show comparatively low exercise capacity and lack in sport-specific motor performance. Research on experiences and perspectives of individuals with hemophilia regarding participation in physical activity remains limited. Therefore, this qualitative focus group study aims to explore perceived barriers and facilitators to participation in physical activity among youth and young adults living with hemophilia. MethodsSeven focus groups were conducted with 28 participants aged 14–30 years with different types and severities of hemophilia. Data were analyzed using a structuring qualitative content analysis approach. Factors perceived as supporting participation were categorized as facilitators, whereas factors perceived as hindering participation were categorized as barriers. ResultsFive main categories related to participation were identified across multiple levels: individual, social, environmental, policy, and societal. Barriers and facilitators were found across all levels and interacted with each other. The social level emerged as particularly influential. Support from family members, doctors, and teachers was described as a key facilitator, while explicit restrictions negatively affected engagement. The societal level also proved to be highly relevant, since it interacts with the other levels and reflects ableist narratives that individuals with hemophilia face in everyday life. DiscussionOverall, participation in physical activity and sports among youth and young adults living with hemophilia is shaped by complex interrelations of barriers and facilitators across these levels. The findings may contribute to raising awareness of these dynamics and highlight the importance of involving individuals with hemophilia early in self-determined decision-making processes.