Introduction People with bleeding disorders (PwBd) and their caregivers face many challenges in developing viable self-management strategies for living with the condition. Nurse-led education can support them to overcome these challenges. However, it is often unclear what educational needs are addressed, how nurses educate PwBd and what didactic concepts they follow.
Aim To gain deeper insights into nurse-led patient education in haemophilia care and provide a basis for a more systematic and evidence-based approach to this task.
Methods A scoping review methodology was used. A systematic search for relevant publications on this topic was conducted in various databases between November 2020 and April 2021. Data sets were analysed following the PRISMA-ScR-checklist and using content analysis.
Results Of 588 studies identified, 23 sources of evidence met the inclusion criteria. The educational needs of PwBd and their families are extensive, multifaceted, and variable but rarely assessed systematically. These needs were met at certain times throughout their lifetimes. Nurse-led education differed in content, duration, and modality, including interventions such as information, consultation and instruction. An improvement in treatment-oriented self-management and self-efficacy was the most reported outcome. The didactic concepts on which the educational interventions were based were rarely specified.
Conclusions There is a lack of systematic approaches in assessing and addressing the educational needs of PwBd and their caregivers. High variability was found in the literature regarding nurse-led patient education in haemophilia care. This suggests that more research is needed on this topic – not least on the interventions' conceptual foundations and impact models.
