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

摘要

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.