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This paper investigates how the notion of comprehensive care (CC) in haemophilia is presented in institutional guidelines and specialized understandings. A literature review of the articles published in Haemophilia was carried out. The main features which authors refer to when mentioning CC were outlined and compared with the principles, assumptions and recommendations set by the World Federation of Haemophilia in relation to this care model. The results show a fragmented scenario. First, very few articles are devoted/explicitly refer to CC. Second, only a few of them completely adhere to the notion of CC as proposed in institutional guidelines. In contrast, most articles stress a single feature, providing a partial view of the model. The focus is mainly on promoting physical health, which is however frequently associated with psychosocial health. Multidisciplinarity has great emphasis, too. Third, some key issues for CC emerge. They are implicitly present in institutional guidelines, but they become the very focus of some articles, which reflect on three challenges to be dealt with: care for all, transition care and systemic care. Such challenges offer the opportunity to clarify and expand the notion of haemophilia CC, and to propose future developments in research projects and interventions.

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.

Adolescents are reluctant to seek help, especially those at psychopathological risk. School may represent the ideal setting to intercept teens in trouble by reducing some barriers to help-seeking behavior; despite this, some obstacles remain difficult to overcome. The present study, involving a large sample (N = 2235) of secondary school students, aims to investigate the effectiveness of a counseling service as part of a multifaceted school-based prevention program. The counseling service is assessed by comparing students who asked for help with their peers in terms of their psychosocial characteristics, risk profiles and perceptions of the strategies that professionals adopt in order to reduce the barriers to individual counseling. Our findings reveal the capacity of individual counseling to serve the most vulnerable adolescents, with the exception of students who might be at risk of school drop-out. The effectiveness of the program implementation theory and the strength of particular strategies used to reduce barriers are discussed.

none 32 si The International Work Group for Therapeutic Residential Care convened an International Summit on ‘Pathways to Evidence-Based Practice’ at Loughborough University (GBR), Centre for Child and Family Research on 27-29 April, 2016 with generous support from the Sir Halley Stewart Trust and in partnership with The European Scientific Association on Residential and Family Care for Children and Adolescents (NLD) (EUSARF), the International Association for Outcome-Based Evaluation and Research on Family and Children’s Services (ITA) (IAOBER) and the Association of Children’s Residential Centers (USA) and with the additional support of Action for Children (GBR) and the National Implementation Service (NIS) (GBR). Membership includes: Lisa Holmes (Chair), Director, Centre for Child and Family Research, Loughborough University (GBR); James K. Whittaker (Co-Chair), Charles O. Cressey Endowed Professor Emeritus, University of Washington, School of Social Work, Seattle (USA); Jorge Fernandez del Valle, Professor of Psychology and Director, Child and Family Research Group, University of Oviedo (ESP); Frank Ainsworth, Senior Principal Research Fellow (Adjunct), James Cook University, School of Social Work and Human Services, Townsville, Queensland (AUS); Tore Andreassen, Psychologist, The Norwegian Directorate for Children, Youth and Family Affairs (NOR); James P. Anglin, Professor, Faculty of the School of Child and Youth Care, University of Victoria (CAN); Christopher Bellonci, Board-Certified Child/Adolescent and Adult Psychiatrist; Associate Professor, Psychiatry Department, Tufts University School of Medicine, Boston, MA (USA); David Berridge, Professor of Child and Family Welfare, School for Policy Studies, University of Bristol (GBR); Amaia Bravo, Lecturer, Department of Psychology, University of Oviedo (ESP); Cinzia Canali, Senior Researcher, Fondazione Emanuela Zancan, Padova (ITA) and President, International Association of Outcome-Based Evaluation and Research in Family and Children’s Services (IAOBER); Mark Courtney, Professor, School of Social Service Administration, University of Chicago (USA); Laurah Currey, Chief Operating Officer, Pressley Ridge, Pittsburgh, PA (USA) and President, Association for Children’s Residential Centers, (USA); Daniel. L. Daly, Executive Vice President and Director of Youth Care, Father Flanagan’s Boys’ Home, Boys Town, NE (USA); Robbie Gilligan, Professor of Social Work and Social Policy, Trinity College Dublin IRE), Hans Grietens, Professor, Centre for Special Needs Education & Youth Care, University of Groningen (NLD) and President, European Scientific Association on Residential and Family Care for Children and Adolescents (EUSARF); Annemiek T. Harder, Assistant professor, Department of Special Needs Education and Youth Care, University of Groningen (NLD); Martha J. Holden, Senior Extension Associate with the Bronfenbrenner Center for Translational Research and the Principal Investigator and Director of the Residential Child Care Project at Cornell University, Ithaca, NY (USA); Sigrid James, Professor, Department of Social Work & Social Ecology, School of Behavioral Health, Loma Linda University, CA (USA); Andrew Kendrick, Professor of Residential Child Care, School of Social Work and Social Policy at the University of Strathclyde (GBR) and Consultant at the Centre of Excellence for Looked After Children in Scotland (CELCIS) and the Centre for Youth and Criminal Justice (CYCJ) (UK); Erik J. Knorth, Professor, Department of Special Needs Education and Youth Care, University of Groningen (NLD); Mette Lausten, Senior Researcher at SFI - The Danish National Centre for Social Research, Copenhagen (DNK), John S. Lyons, Senior Policy Fellow at Chapin Hall, University of Chicago, IL (USA); Eduardo Martin, Lecturer at the Department of Developmental and Educational Psychology, University of La Laguna, Tenerife (ESP); Samantha McDermid, Research Fellow, Centre for Child and Family Research, Loughborough University (GBR); Patricia McNamara, Senior Fellow (Honorary), Department of Social Work, University of Melbourne (AUS); Laura Palareti, Assistant Professor in Social Psychology, Department of Education Studies, University of Bologna (ITA); Susan Ramsey, Parent and Former Children’s Mental Health Advocate, The Walker School, Needham, MA (USA); Kari M. Sisson, Executive Director, Association of Children’s Residential Centers (USA); Richard W. Small, Walker Executive Director Emeritus, The Walker School, Needham, MA (USA); June Thoburn, Emeritus Professor of Social Work, University of East Anglia (GBR); Ronald Thompson, Senior Director, Boys Town National Research Institute for Child and Family Studies, Boys Town, NE (USA); Anat Zeira, Professor, School of Social Work and Social Welfare, Hebrew University of Jerusalem, and Head of Research and Evaluation at the Haruv Institute (ISR). 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. Whittaker, James K; Holmes, Lisa; del Valle, Jorge F.; Ainsworth, Frank; Andreassen, Tore; Anglin, James; Bellonci, Christopher; Berridge, David; Bravo, Amaia; Canali, Cinzia; Courtney, Mark; Currey, Laurah; Daly, Daniel; Gilligan, Robbie; Grietens, Hans; Harder, Annemiek; Holden, Martha; James, Sigrid; Kendrick, Andrew; Knorth, Erik; Lausten, Mette; Lyons, John; Martin, Eduardo; Mcdermid, Samantha; Mcnamara, Patricia; Palareti, Laura; Ramsey, Susan; Sisson, Kari; Small, Richard; Thoburn, June; Thompson, Ronald; Zeira, Anat Whittaker, James K; Holmes, Lisa; del Valle, Jorge F.; Ainsworth, Frank; Andreassen, Tore; Anglin, James; Bellonci, Christopher; Berridge, David; Bravo, Amaia; Canali, Cinzia; Courtney, Mark; Currey, Laurah; Daly, Daniel; Gilligan, Robbie; Grietens, Hans; Harder, Annemiek; Holden, Martha; James, Sigrid; Kendrick, Andrew; Knorth, Erik; Lausten, Mette; Lyons, John; Martin, Eduardo; Mcdermid, Samantha; Mcnamara, Patricia; Palareti, Laura; Ramsey, Susan; Sisson, Kari; Small, Richard; Thoburn, June; Thompson, Ronald; Zeira, Anat

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.

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-Martín 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.

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.Key words: Haemophilia, patient perspective, thematic analysis, psychosocial, cross-cultural(Published: 16 November 2015)Citation: Int J Qualitative Stud Health Well-being 2015, 10: 28915 - http://dx.doi.org/10.3402/qhw.v10.28915