Impact of hemophilia on social functioning: a qualitative descriptive study in Brazil

Hemophilia is a rare bleeding disorder that continues to affect daily life, particularly for generations of patients who lacked early access to prophylaxis and for the ones who failed to follow the optimal therapeutic plan. The available evidence on PwH lived experiences of social functioning is however limited. This study aimed to explore how people with hemophilia (PwH) experience education, work, and leisure across the lifespan. A secondary thematic analysis was conducted using 23 semi-structured interviews with PwH recruited through the Brazilian Chapter of the World Federation of Hemophilia. Transcripts were analyzed with framework analysis to identify cross-cutting themes. Three themes were identified: (1) descriptions of how their life trajectories were marked by interruptions, repeated absences and career delays because of the bleedings, pain, and treatment routines; (2) the psychosocial impact of stigma on personal relationships and professional identity; and (3) strategies used for rebuilding paths to carry on and improve social functioning such as career redirection, safe leisure, and family support. These qualitative findings complement research on quality of life of PwH, revealing how participants described hemophilia as influencing their social functioning experiences of disruption, stigma, and adaptation, and underscoring the need for treatment access, education, and psychosocial support in Brazil.