标题：The subjective experience of living with haemophilia in the transition from early adolescence to young adulthood: the effect of age and the therapeutic regimen
期刊名称：International Journal of Adolescence and Youth
印刷版ISSN：0267-3843
电子版ISSN：2164-4527
出版年度：2018
卷号：23
期号：2
页码：1-13
DOI：10.1080/02673843.2017.1299017
出版社：Taylor and Francis Ltd
摘要：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.
关键词：Haemophilia ; chronic illness ; adolescence ; type of therapy ; transitions ; psychosocial support
