Francesca Emiliani

Process of Normalization in Families With Children Affected by Hemophilia

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.

Social Representations of Rights and Duties in Young Italians and Albanians

Rights and duties are normative social representations that organize social interactions. In this article, representations of rights and duties were analyzed in Italy and Albania, focusing on their social anchoring in culture and values. Italians underlined the priority of their individual rights over duties to others. Conversely, Albanians defined rights as focusing on the protection of fundamental individual freedoms and defined duties emphasizing the responsibilities of the individual and the family. The anchoring in value-types shows that people who attach importance to individualistic values conceived of rights in a self-centered manner, while those who attach importance to egalitarian values underscored their personal responsibilities in rights and duties.

Children's Rights in Educational Relationships.

The aim of this study is that of reaching a better comprehension of the topic of children’s rights within educational relationships. In a first stage, we analysed the representational field of children’s rights produced through free associations by the two partners who are in conflict in everyday life, namely adults (n=267) and adolescents (n=143). In a second stage, we chose a sample of 690 adult subjects that were all parents, half of whom were also teachers; through a structured questionnaire we investigated the role of several aspects (responsibility, respect, values, conditions influencing children’s growth and sense of justice) in the organisation of social representations of children’s rights. The results outlined different contrasts in the organisation of the representational scenario. The first opposes adults and adolescents, in the sense that adults emphasise their duties of offering protection and care, while the youngsters describe rights in terms of autonomous field of experience. Within the group of adults, several differences emerged between teachers and parents: the first seem more doubtful about the positive outcomes of personal involvement, while parents are moved by a general feeling of optimism, anchored in the faith in the family’s strength and integrity.RésuméL’objectif de cette recherche est de vérifier l’enjeu de la problématique des droits de l’enfant dans les relations éducatives. Dans une première phase, nous avons étudié le champ représentationnel de ces droits à travers les libres associations produites par un groupe d’adultes (n=267) et par un groupe d’adolescents (n=143). En raison du caractère inéluctable et asymétrique de la relation qui les unis, les deux groupes sont, en effet, amenés quotidiennement à se confronter sur la question de l’application des droits.Dans une deuxième phase, nous avons soumis un questionnaire à un échantillon de 690 adultes dont la moitié d’entre eux a des enfants. Il s’agissait dans ce cas d’étudier le rôle de l’attribution de responsabilité, de l’évaluation de respect des droits, des conceptions concernant le développement de l’enfant et du sens de la justice dans l’organisation des représentations sociales des droits de l’enfant. Les résultats mettent en évidence différents contrastes dans le scénario représentationnel. Le premier oppose les adultes et les adolescents: les adultes expriment avec emphase leurs devoirs de protection et de soin, tandis que les jeunes décrivent leurs droits en termes d’autonomie et d’expérience. Parmi le groupe des adultes, plusieurs différences distinguent les parents des enseignants; ceux-ci expriment plusieurs doutes en ce qui concerne l’efficacité de leur implication personnelle dans la promotion et l’application des droits, tandis que les parents expriment à ce sujet un certain optimisme soutenu par une idée traditionnelle de famille qui doit être unie et intègre.

Diversi regimi terapeutici nel trattamento di bambini affetti da malattia emorragica congenita: processi di scelta e ricadute sul benessere psicosociale del paziente e della sua famiglia

Un tratto caratteristico delle malattie emorragiche congenite (di cui la piu diffusa e l’emofilia) e l’imprevedibilita dell’evento emorragico, della sua durata e della sua severita, da cui consegue una condizione di continua incertezza sulle modalita e la tempestivita necessarie per l’intervento. Il superamento di questa condizione e oggi possibile attraverso l’infusione del fattore di coagulazione mancante. Quest’ultima puo essere attuata tramite due modalita: profilassi e terapia al bisogno. Questo studio ha come obiettivo la comprensione approfondita delle condizioni che favoriscono o che invece ostacolano l’adesione a forme diverse di trattamento terapeutico, in particolare profilassi e terapia al bisogno, in famiglie con bambini affetti da emofilia. Sono stati intervistati congiuntamente i genitori di 11 famiglie con figli emofilici in eta evolutiva, residenti a Bologna e provincia che aderivano a trattamenti differenziati (profilassi o terapia al bisogno). I risultati mostrano come le due diverse forme di terapia siano collegate a differenti rappresentazioni della malattia e a diverse modalita di funzionamento familiare. La profilassi si conferma la terapia che maggiormente si accompagna ad uno stile di vita normalizzato sia per il bambino che per l’intera famiglia.

Shared topics on the experience of people with haemophilia living in the UK and the USA and the influence of individual and contextual variables: Results from the HERO qualitative study

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 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.

Subjective Experience of Illness Among Adolescents and Young Adults With Diabetes: A Qualitative Research Study

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.

The subjective experience of living with haemophilia in the transition from early adolescence to young adulthood: the effect of age and the therapeutic regimen

Abstract The main aim of the research is to study how youths affected by haemophilia, a congenital hemorrhagic chronic disease, make sense of their condition, with particular reference to the transition from early adolescence to early adulthood. We administered face-to-face semi-structured interviews to 20 Italian youths with haemophilia, aged 11–25 years, in on-demand treatment or prophylaxis therapy. A thematic analysis was performed with the help of software for textual data to figure out the main topics and the role of the two selected variables in the emergence of the themes (age and type of therapy). The results highlight how the experience of suffering from haemophilia is organized around five core themes (fragmented body, intimacy, family history, autonomy, dreams), that are more or less typical of some age group or kind of treatment. These results may be useful for designing appropriate and differentiated interventions for psychosocial support.

Risky consumption, reasons for use, migratory status and normalization: the results of an Italian study on minors aged between 13 and 16

Purpose The purpose of this paper is to describe the relationship between migratory status, the use of legal and illegal psychoactive substances and psychological disorders perceived in a sample of minors. Design/methodology/approach A transversal multicentre study was carried out with interviews with young people aged 13-16 years recruited from middle and high schools in Italy. Findings The results show the implementation of a process of normalization in terms of the presence of legal and illegal psychoactive substances in the living contexts of the minors, of their widespread early use and of a substantial indifferentiation in the reasons for use (e.g. pleasure, curiosity, fun). Youths born in Italy with at least one non-native parent are noteworthy for an elevated prevalence of perceived psychological disorders and for particular lifestyles linked to the use of marijuana, alcohol abuse and the intensive consumption of tobacco. Second-generation minors show symptoms of psychological malaise, anxiety and depression before which the use of substances appears to realize a particular form of self-cure. Research limitations/implications This study presents some objective limits that indicate prudence in generalizing the results: only those who obtained consent from their parents were interviewed and the information communicated in the interviews could have been influenced by various factors, including the situation and the location. The authors used a standard definition of binge-drinking (Valencia-Martin et al., 2008). Actually, different criteria (i.e. number of drinks, time of consumption, etc.) and formulations of the question are used in different surveys, showing that there is as yet no consensus definition of binge-drinking. Nevertheless, the term has become somewhat confusing as it is often used as a synonym of drunkenness, making cross-cultural comparisons difficult (Beccaria et al., 2014). These are aspects that limit the generalizability of the results to the interviews alone and do not allow for prevalence estimates. Nevertheless, the results offer useful indications for future prevention projects specifically oriented to early adolescence. Practical implications The results of the study, on the one hand, document the growing use of legal and illegal proactive substances among minors and the relative cultural trend in this particular age band, testified to by the high number of those who have been present in situations of consumption to whom the substances were offered; on the other, they evidence a subpopulation of youths born in Italy with at least one non-native parent (i.e. second generation of immigrants). These youths stand out for an elevated prevalence of perceived psychological disorders and for their particular lifestyles connected to the use of marijuana, alcohol abuse and the intensive consumption of alcohol. This is also the group with the highest percentage of mothers alone in the family. Social implications A group of adolescents living in a monoparental family, that is, with the mother alone emerges, and as the literature has shown, family structure and poverty are linked (Landale et al., 2011; Svensson and Hagquist, 2009). In fact, such mothers, even those with a high level of education, are mostly unemployed. Adolescents with a single parent often not only face resource deficits but also other risk factors, such as high family stress, inadequate supervision, multiple family transitions and frequent residential moves. Specifically, these second-generation adolescents are female and they manifest sensation-seeking behaviours, but without drug abuse. Originality/value The results of the study show new and little-known aspects of the multicultural Italian society that is changing profoundly that should be explored in more detail by targeted research that also focussed on structural factors relatable to specific social positions. In this framework, a particular subgroup, i.e. the second-generation minors, shows symptoms of psychic malaise, anxiety and depression in terms of which substance use seems to realize a form of self-cure.