<p>Health care professionals dealing with hemophilia: insights from the international qualitative study of the HERO initiative</p>

Abstract

Background: Assessing the viewpoints of health care professionals concerning their work with chronic patients is a relatively new research topic, widely overlooked in the literature. However, understanding their subjective work experience is highly relevant for identifying problems and perceived resources, enhancing health service organisation, improving relationships or communication with patients, and maintaining well-being. Purpose and method: Qualitative data from the “Haemophilia Experience, Results and Opportunities” Initiative – a research program aimed at investigating the psychosocial aspects of hemophilia – were used to evaluate the experiences of 62 professionals from seven countries around the world. Semi-structured interviews were submitted to thematic analysis of elementary contexts with the aid of T-Lab software. Results: Five dominant themes emerged, identifying the main challenges that professionals have to deal with in their everyday work practice: caring for impaired adult patients; handling policies and stakeholders; providing counselling on diagnosis and reproductive choices; considering the role of family dynamics; coping with adolescent patients. Conclusion: The outcomes of the study provide an opportunity to develop the area of the non-technical skills in the core curriculum of those who work with chronic illnesses by focusing on cross-professional competences and by improving a comprehensive care model for hemophilia patients.

<p>Correlations between patient-reported outcomes and self-reported characteristics in adults with hemophilia B and caregivers of children with hemophilia B: analysis of the B-HERO-S study</p>

“…Participants provided demographic and clinical information, including hemophilia B severity, treatment methods, self-reported illnesses, and employment status. The psychosocial question battery was based largely on those developed for the HERO study by an international expert panel, informed initially by a literature review13 and qualitative interactive survey14,15 that resulted in the 10 country qualitative survey instruments 8. Additional clarifying questions were added based upon issues raised by expert panel and authors (eg, impact of prior relationships and disclosure)16 and feedback from global and regional HERO summit 17.…”

Haemophilia in France: Modelisation of the Clinical Pathway for Patients

“…The treatment of haemophilia is evolving and changed the role of external stakeholders [ 36 ]. As a result of progress in disease management, healthcare professionals who are not haemophilia specialists are more likely to encounter people with haemophilia [ 37 ]. Nurses, for example, are the first point of contact for people with haemophilia and provide more care to patients and their families than any other specialist on the team [ 38 , 39 ].…”

“…Continuity of care over time requires awareness and education of other health care providers who are not specialized in haemophilia care [ 37 ]. It is a response to the need to improve quality of life, accessibility to treatment and the performance of management for patients treated chronically over the long term.…”

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

“…Good experiences were made in practice. 31 Poti et al 32 suggest a peer-supported concept using summer camps held by stakeholders for the education of PwBd. There are discussions from other authors if easy-accessible online education with tailored, engaging telehealth options 33 is the preferred option for medical information of PwBd rather than a face-to-face setting as suggested by Barlow.…”