Nurse-led education is an essential aspect of care for patients with bleeding disorders, yet research on specific strategies to improve patient self-management through education is currently lacking.

Bleeding disorders such as hemophilia and von Willebrand disease are rare, but as treatment advances, it is important that patients with blood disorders (PwBd) continue to learn and adjust their daily self-management strategies. .However, studies published in journals hemophilia found that there is a need for a more systematic approach to assessing and addressing the educational needs of patients.

Nurses are often the first point of contact for both patients and caregivers and play a particularly important role in educating children diagnosed with bleeding disorders. This type of patient support promotes adherence to self-management measures and is considered an important role of nurses in hemophilia care.

“While patient education is considered an essential task for nurses in haemophilia care, practice suggests that this task tends to be incidental, often as a secondary task during routine visits. There is evidence of,” the study authors wrote. The needs of PwBd and their caregivers and the educational interventions needed to address them.”

The scoping review aimed to provide insight into nurse-led PwBd patient education and to provide a basis for a more systematic approach to patient education based on existing research.

A total of 579 records were retrieved from various databases and journal searches, 498 of which were screened by reading titles and abstracts. After applying exclusion criteria, 25 studies were included in the review. Few studies have focused on PwBd and the educational needs of caregivers, and how PwBd and caregivers view their educational needs and how professionals view their patients’ educational needs. there was a big difference.

Studies focused on patient needs emphasized topics such as motivation, barriers to treatment adherence, and treatment acceptance over general educational strategies. During certain life stages, such as pregnancy, specific educational needs were addressed in several programs. The authors emphasize the need for early childhood education immediately after diagnosis in which patients and their caregivers have the opportunity to become experts in the early stages of treatment.

The available research shows that nurses do a number of educational tasks, most of which focus on improving patient self-management and addressing impairments related to long-term self-treatment. was doing. There was considerable diversity in the types of tasks performed by nurses, from improving a patient’s health literacy to counseling individuals on specific issues related to the emotional impact of blood disorders.

In addition to experience, the literature also highlights the value of educational and psychological theories and models for nurses to structure and guide patient education in haemophilia care. Several studies have suggested developing standardized concepts and materials to facilitate more uniform processing of PwBd.

“Based on the literature, nurse-led education must be coherent, participatory, long-term, and opportunity-relevant to meet patient needs (e.g., early childhood). and the idea of ​​“elements as tools for living a normal life”). life improves adherence),” the authors write. User-centered education is important, especially when parents face the transition to caregiver or when children with blood disorders transition from caregiver care to self-medication.

This review found little evidence of regular systematic assessments of patients’ educational needs or nurse-led mandatory programs to consistently support disease self-management. Overall, however, nurse-led education was associated with improved treatment-oriented self-management and self-efficacy.

Although patient needs appear to be met at specific life points, reviews require a systematic approach to assess patient and caregiver education and to address potential knowledge gaps. It highlights the lack of approach. Given the paucity of data and the high variability of the available literature, further research on the conceptual underpinnings and impact models of PwBd’s educational interventions is needed.

“Patient education and self-management support should receive as much attention, evaluation, validation and reflection as other haemophilia treatments and interventions,” the authors concluded.


Ballmann J, Ewers M. Nurse-led education of people with bleeding disorders and their caregivers: a scoping review. hemophiliaPublished online July 18, 2022. doi:10.1111/hae.14629

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