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NN HERO Research Grant

HERO has brought to light many challenges that people living with haemophilia experience in their daily lives, uncovering gaps in haemophilia care and helping to raise awareness of haemophilia. The HERO Research Grant aims to support projects involving research on the psychosocial issues and challenges faced by people living with haemophilia.
Nome del ProgettoRuoloStatoEnte CoordinatoreDurataSito web
Health Professionals and the psychosocial aspects of their work: a proposal for the expansion of core-curriculum based on the experiences of professionals and clients Partner di progetto in corso Novo Nordisk Health Care AG 01/03/2017 - 28/02/2019

Studies on the experiences of Health Care Professionals (HCPs) working with haemophilia are rare, despite psychological literature shows that the professional wellbeing correlates with motivation, teamwork, and a good quality of care. In order to overcome this gap, a specific technique was recently used to analyze the interviews of 62 HCPs (physicians, nurses, physiotherapists, social workers, and psychologists) collected in 7 countries during the first Qualitative Hero study (2010).
The analyses revealed the cognitive and affective contents of five main themes that describe HCPs' experiences with haemophilia, regardless of where they live and practice. The themes are: 1) Dealing with policies, stakeholders and resources of the local care system; 2) Caring for impaired adult patients; 3) Communication and consultancy; 4) Caring for adolescents; 5) Consider family dynamics.
This project is based on the idea that each theme represents an area where the use of different perspectives (HCPs, PWH, families and patients' associations) can lead to the identification of relevant cross-professional and non-technical skills that support multidisciplinary and comprehensive care of PWH.
The first aim of this two-year work is to identify such competencies, while the second is to pilot the assessment of the related training needs in the five domains.

Our expected results are:
1) A description of knowledge and skills related to the psychosocial aspect of care that can be included in a shared core curriculum for HCPs in haemophilia;
2) Information about educational needs in this area;
3) A questionnaire that can be further developed to assess training need.

Resposabile Scientifico: Prof.ssa Laura Palareti