Nurse‐led education of people with bleeding disorders and their caregivers: A scoping review

Abstract

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.

Improving bleeding disorder treatment log adherence: An application of the information‐motivation‐behavioral skills model

“…With the exception of Blankenship et al 11 . few studies have focused on designing and implementing patient education for PwBD guided by a theoretical concept 12 . Our study demonstrated that theoretically‐based nurse‐led education related to this quality improvement initiative improved patient outcomes.…”

The role of the specialist nurse in comprehensive care for bleeding disorders in Europe: An integrative review

“…Almost three quarters of the articles referred to the HN's role as educator. Education of PwBD is defined as ‘nurse‐led’, with the nurse‐educator role described as ‘crucial’ 16 …”

“…modifying a treatment plan, pre-scribing) is subject to health laws. 16 Nevertheless, the organisation of haemophilia care in Europe requires a specialist nurse. 9 An exercise undertaken by the EAHAD Nurses Committee in 2016 outlined the skills and attitudes needed to practice as a HN, 11 and the review presented here builds on this by confirming the range of roles and tasks that HNs may perform.…”

“…Education of PwBD is defined as 'nurse-led' , with the nurseeducator role described as 'crucial' . 16 HN provides education for PwBD on aspects of self-care including bleed recognition, prevention and management, home treatment and mitigating risks, 10,[17][18][19] as well as explaining the genetics of BDs. [20][21][22] Almost 90% of nurses in a global survey identified infusion training as part of their daily practice, with most saying the same of education.…”

“…59 In some European countries, nurse-led haemophilia care is increasing. 10,16,18,41 Experienced HNs are well placed to contribute to improvements in patient care through executing research within this field, 59 for example through service evaluation around patient journeys/pathways, patient satisfaction and implementing national guidelines and targets.…”