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

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.

Keywords:

• health care professionals
• subjective experience
• chronic illness
• hemophilia
• cross-cultural

Acknowledgments

We thank Professor Alfonso Iorio, McMaster University, for his support and for allowing us to work on the interviews collected within the Haemophilia Experience, Results and Opportunities (HERO) Initiative. This work was supported by the McMaster University (collaborative research agreement between McMaster University and Bologna University, number 10-850716; total funding 10,000 CAD) as part of an unrestricted research grant from Novo Nordisk for the Haemophilia Experience Results and Opportunities (HERO) initiative.

Ethics approval and informed consent

The ethics committees responsible for each country involved and the HERO International Advisory Board approved the study. Written informed consent was obtained from the health care professionals for their anonymized information to be published in this article.

Author contributions

Silvia Potì, Laura Palareti, and Frederica Cassis researched the literature and conceived the study. Frederica Cassis was involved in protocol development, gaining ethical approval, and conducting patient recruitment. Silvia Potì and Laura Palareti were involved in the data analysis. Silvia Potì, Laura Palareti and Sonia Brondi wrote the first draft of the manuscript. All authors contributed to data analysis, drafting and revising the article, gave final approval of the version to be published, and agree to be accountable for all aspects of the work.

Disclosure

Frederica RMY Cassis received honoraria from Novo Nordisk for oral presentations in meetings and symposium; Silvia Potì reports grants from Novo Nordisk, during the conduct of the study; Laura Palareti reports grants from Novo Nordisk, outside the submitted work. The authors report no other conflicts of interest in this work.