Our work group wishes to thank CFRC staffer Laura Dale at Loughborough for extraordinary efforts in producing this statement in record time and for her care and assistance with all phases of our Summit activity.
The study illuminates the subjective experience of haemophilia in people who took part in the Haemophilia Experience, Results and Opportunities (HERO) initiative, a quali-quantitative research program aimed at exploring psychosocial issues concerning this illness around the world. Applying a bottom-up analytic process with the help of software for textual data, we investigated 19 interviews in order to describe the core themes and the latent factors of speech, to explore the role of different variables in shaping the participants’ illness experiences. The five themes detected are feeling different from others, body pain, acquisition of knowledge and resources, family history, and integration of care practices in everyday life. We illustrate how nationality, age, family situation, the use of prophylaxis or on-demand treatment, and the presence of human immunodeficiency virus or hepatitis C virus affect the experience of our participants in different ways. Findings are used to bring insights on research, clinical practice, and psychosocial support.
The main goal of this study was to delve deeper into the relationship between transformational leadership and better general health status among employees. Based on the Job Demands-Resources model of occupational well-being, the current research investigated the role of transformational leadership, as a job resource, in fostering individual hardiness, as a personal resource, which may in turn result in higher levels of work engagement and, consequently, better general health status among employees. Data were collected from 358 white-collar employees in an Italian company. Most of them were women (52.9%) with a mean age of 44.42 years (SD = 9.22). To evaluate the hypothesis of a mediating role of employees’ hardiness and work engagement within the relationship between transformational leadership and workers’ general health, a bootstrapping approach was tested using a serial mediation model. In the current sample, enhanced levels of hardiness and work engagement among employees mediated the association between perceived levels of transformational leadership and individual general health conditions. These findings corroborated the role of transformational leadership as a strategic job resource in enhancing employees’ hardiness and engagement with their work, which may in turn protect their general health status. Organizations willing to rely on a healthy workforce should implement human resource management strategies focused on leadership training capable of boosting employees’ hardiness.
To understand the normalization process in families with hemophiliac children, and to explore the impact of two different therapeutic regimes on it (on-demand therapy and prophylaxis), we conducted a two-phase study using semistructured interviews. In the course of the first phase, we interviewed 13 parents belonging to 10 families with hemophiliac children in on-demand therapy. In the second phase, 5 years later, we repeated the interviews with three families who began prophylaxis at different times. We analyzed the interviews using text analysis software. The results show very different representations of hemophilia and daily life. Normalization processes involve the overcoming of a divided conception of life, and encourage the integration of care practices within daily life. Moreover, in our article we suggest that although prophylaxis facilitates the recovery of a regular family routine, it alone cannot produce normalization.
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