SOCIAL REPRESENTATIONS OF HAEMOPHILIA IN ADOLESCENTS AND YOUNG ADULTS: A PSYCHOSOCIAL PERPECTIVE ON COMPLIANCE

Background. This paper is intended as an exploration of the Social Representations of haemophilia, and the normalization process in adolescents and young adults affected by congenital hemorrhagic diseases. An extensive medical literature (Petrini & Seuser, 2009) regarding adolescents with chronic illness shows that during adolescence there is an abandonment of treatment regimens and reduced adherence to medical prescriptions. The purpose of the research was to understand the phenomenon reported in the scientific literature of the reduction of compliance in adolescence in regard to the social representation of haemophilia. In our hypothesis, such representations highlight how haemophilia is included in the process of construction of the Self, specifically referring to the increasing autonomy from the family and the socialization with peers. Materials and methods. The research involved 20 adolescents and young adults suffering from congenital hemorrhagic diseases. We administered semi-structured interview to all the participants. The interviews were analyzed using the Thematic Analysis of Elementary Context from T-Lab software (Lancia, 2004), with the aim of exploring the lexical worlds (Reinert, 1995). Results and Conclusions. The results suggest different themes that organize the affective and cognitive signification process of haemophilia. The recourse to a therapeutic regime like prophylaxis looks like more associated to an integration of the illness in the Self and in the daily life, while the therapy on demand is more associated to a representation of the haemophilia as external to the Self and concerning only the body. Furthermore, different ranges of age are linked to different kinds of representation: haemophilia is considered by the adolescents like a body's break, while it is considered by young adults as a mystery for which researching causes in the family history.