European Principles of Nursing Care for Persons With Inherited Bleeding Disorders

Abstract

INTRODUCTION: A nurse is one of the core members of the multidisciplinary haemophilia team. However, what people with inherited bleeding disorders (PwBD) can expect from them has not yet been formally defined. AIM: This project, initiated by the EAHAD Nurses Committee, aimed to establish Principles of Nursing Care (PoNC) for PwBD to promote high-quality, consistent nursing care throughout the European Haemophilia Comprehensive Care Centres (EHCCC) and European Haemophilia Treatment Centres (EHTC). METHODS/RESULTS: The PoNC were developed through a multi-phase process, which included 10 roundtable meetings with input from expert nurses across Europe. The emerging PoNC were critically reviewed by members of the European Haemophilia Consortium (EHC), EAHAD Executive Committee, EAHAD Physiotherapists Committee and EAHAD Psychosocial Professionals Committee. Based on their feedback, the authors made further refinements, resulting in the final version of the PoNC. CONCLUSION: In summary, PwBD should have access to nurses who provide coordinated person-centred care across all aspects of their lives. This includes education, treatment management, life-stage support, surgical coordination, genetic counselling and special attention to the needs of women and girls. The nurses must also stay informed about research developments to ensure up-to-date care. The PoNC strengthen nursing care by providing a framework to address patient needs and may guide the development of care strategies, empowering patients and HCPs to advocate for high-quality care. These principles promote standardised nursing care in EHCCC and EHTC, to be applied alongside local policies and EAHAD's accreditation standards.