Haemophilia nursing practice: A global survey of roles and responsibilities

Abstract

Haemophilia nursing roles continue to develop alongside nursing as a profession. There are now nurses who practice autonomously, much like a medical practitioner, and many who have extended their roles to deliver direct patient care, education and research. There has been little, if any, comparison with haemophilia nurse roles internationally, nor of the impact of these roles on patient reported outcomes. This paper reports the results of an international survey, of 297 haemophilia nurses from 22 countries, describing current day practice and care. Many nurses work above and beyond their funded hours to improve care through research and evidence-based practice. While some are able to attend international meetings to report and discover this evidence, many due to financial constraints, are not. Others reported difficulty with communicating in English, which limited congress attendance. With on-line learning capability, sharing of best practice is now possible, and this approach should be a platform developed in coming years to further enhance haemophilia nursing practice and ultimately patient care.

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

“…Information, counselling, and instruction are essential strategies to support PwBd and their caregivers in developing successful self‐management strategies and gaining independence from professional caregivers while at the same time producing better clinical outcomes. But despite the finding from a global survey on haemophila practice from 2016 that 88% of nurses in that field think about education as a day‐to‐day responsibility, 35 there still seems to be a lack of sufficiently systematic discussion and theory‐guided, evidence‐based practice on this topic.…”

“…Furthermore, none of the educational programmes, concepts, or interventions we found was empirically validated. ing from a global survey on haemophila practice from 2016 that 88% of nurses in that field think about education as a day-to-day responsibility, 35 there still seems to be a lack of sufficiently systematic discussion and theory-guided, evidence-based practice on this topic.…”

Construção E Validação De Instrumento De Consulta De Enfermagem Para Pessoas Com Hemofilia

“…Neste contexto, é frequentemente sugerido que o papel dos enfermeiros se tornará cada vez mais importante na prestação futura de cuidados a PcH (5)(6)(7)(8)(9)(10)21) . Segundo o European Haemophilia Consortium:…”

“…A aplicação da CE requer o treinamento contínuo de enfermeiras para raciocínio clínico, usando ferramentas do exame clínico (4)(5)(6) bem como para diagnóstico de enfermagem, de forma que foram acrescentados no instrumento os diagnósticos de enfermagem e os encaminhamentos realizados pelas enfermeiras de forma a garantir a autonomia.…”

“…A consulta de enfermagem (CE) é parte fundamental do cuidado a PcH, sendo considerada uma estratégia tecnológica importante e resolutiva, que oferece inúmeras vantagens no cuidado prestado (4)(5) . Neste contexto, o enfermeiro é um dos principais protagonistas do cuidado, porque realiza educação em saúde do paciente e familiares (1,(4)(5)(6) , faz o treinamento para autoinfusão do fator em domicílio (7)(8)(9) , monitora o progresso do tratamento, melhorando a qualidade e a segurança, incluindo a adesão ao tratamento (9)(10) .…”