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.
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.
This work presents a semiotic approach to the economy, underlining that any economic phenomena is at the same time a communicative act as it is contingent to sense-making. The article discusses this topic by focusing on a specific phenomenon studied by economics: the underground economy. It shows that the conceptualization of the underground economy in terms of sense-making processes offers a thought-provoking perspective for theoretical development. More in general, the discussion proposed makes it clear that in order to deepen our vision of economic phenomena in a more thoughtful and realistic way we need to rethink these phenomena as being reciprocally and circularly embedded in the semiotic flow of life. The economy is within sense-making and it is shaped by it; at the same time sense-making is within the economy, as its semiotic substance.
Diabetes mellitus type 1 is a chronic illness that has its onset in childhood or adolescence. It is determined by the insufficient production of insulin. The main therapies consist of replacement of the lacking insulin, diet, exercise, and glycemic control. If treatment is managed by parents in childhood, adherence seems to be a difficult issue during adolescence. In order to understand the subjective experience of the illness and treatment, the present study aims to investigate the patients’ subjective perspective by addressing a group of adolescents and young adults in pediatric care. A qualitative research design was adopted with semi-structured interviews, and later software thematic analysis was performed. Six core issues were deepened: family and health-care professional’s mediation support for self-management, adherence to treatments as a boring responsibility, disclosure problems in peer relationships, difficulty in becoming autonomous in a period of socioeconomic crisis, illness as concern for the future, and seeking a normal life in daily activities. The knowledge can be useful for designing more appropriate interventions that favor the active engagement of patients.
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