A NEW nurse-led education program, presented by Nuria Caballero at the 2025 EAHAD Annual Congress, aims to support female haemophilia carriers throughout their lives, addressing their health and psychosocial needs. This abstract was spotlighted as the best from all submitted for the Allied Healthcare Professionals’ Day.
Haemophilia, a rare X-linked bleeding disorder, is more commonly associated with males, but for every man with haemophilia, there are approximately 2.7 female carriers. Historically, these women have been overlooked, with their role as carriers often unrecognised.
The project, led by a multidisciplinary team from Hospital Sant Joan de Déu (SJD) in Barcelona, involves haematologists, pediatric haematologists, clinical nurse specialists, genetic counsellors, gynaecologists and psychologists. It was designed to provide tailored health education for female carriers from childhood to older adulthood.
The program unfolded in four phases: designing a protocol for each stage of the carrier’s journey, gathering input from female carriers about their concerns, creating specific educational materials, and validating these materials with their feedback. Five informational leaflets were developed to address the needs of caregivers, teenagers, adults, women with maternity concerns, and older women.
The project emphasizes the importance of providing relevant information at key life stages, along with fostering a connection between female carriers and specialised healthcare units. The initiative demonstrates how nurse-led education can empower female carriers by offering them the knowledge and support they need to manage their health and navigate the challenges of being a haemophilia carrier.
Helena Bradbury, EMJ
Reference
Caballero N et al. Abstract NUR03. Presented at: EAHAD 2025 Annual Meeting: Feb 4-7, 2025;Milan, Italy.
