Reprezentarea socială a hemofiliei: o abordare narativă

Building upon the theory of social representations and the concept of social object of representation, and employing the narrative approach, in this paper we examine the specificity of haemophilia as a social object of representation and the social representations of the carriers regarding this bleeding disorder. As haemophilia is rare, inherited chronic illness, we were interested to explore the process of construction and re-construction of social representation, taking into consideration the impact of three major elements – shared knowledge (common or scientific), everyday visibility and lived experience. According to our results, the narrations about haemophilia are structured around four dimensions (cognitive, affective, behavioural and relational), pointing to the different processes by which social representation is established. Two objects of representation (affective cognitive vs affective non-cognitive), as well two categories of discourses (families with history vs families without history of haemophilia) with reference to the process of construction and re-construction of representation will be analysed in this paper.