Perceived barriers and facilitators for physical activity in youth and young adults living with hemophilia. A focus group study

IntroductionHemophilia is a rare hereditary bleeding disorder characterized by a deficiency of clotting factor, resulting in an increased bleeding tendency. Historically, people living with hemophilia (plwh) were advised to avoid physical activity (PA) due to injury risk. Today, improved treatment options enable plwh more self-determined lifestyles. Moreover, medical perspectives on PA have shifted underlining the benefits of regular engagement in PA for physical and mental health. Nevertheless, youth and young adults living with hemophilia (yyalwh) show comparatively low exercise capacity and lack in sport-specific motor performance. Research on experiences and perspectives of plwh regarding participation in PA remains limited. Therefore, this qualitative focus group study aims to explore perceived barriers and facilitators to participation in PA among yyalwh.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 yyalwh face in everyday life.DiscussionOverall, participation in PA and sports among yyalwh 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 yyalwh early in self-determined decision-making processes.