The diagnosis of rare disease in developmental age represents a destabilizing turning point in the stories of families, in relation to both "before" - life until that moment - and what is considered as "normal"in accordance with cultural models (Emiliani, Palaret and Mellotti, 2010). In facing with the specific problems of each disease, parents try to "make sense" to their experience through meaning-making and role adaptations. The aim of this study is to investigate the experiences about normalization and parental roles with 5 parents’ couples having to do with rare diseased children, through narrative interviews (Atkinson, 2002). The texts have been analyzed by the means of Discourse Analysis, SAM Model (Mininni et al., 2014) and interpretative repertoires. Main results reveal both thematic and rhetoric peculiarities in the construction of identity positioning in accordance with "traditional" parental role: respectively as primary caregivers and as concrete support figures, mothers live the disease with high emotional commitment, whereas fathers depict it as an obstacle to a "normal" life. Indeed, we found oscillations of positioning between the "warrior mams" and "heartbroken fathers".
Keywords: Rare disease, normalization, parental identity, narrative, diatextual analysis, interpretative repertoires
Altomare Enza Zagaria, Rosa Scardigno, Caterina Colonna, Giuseppe Mininni, Discursive dynamics in restructuring parental roles in families with rare disease in "PSICOLOGIA DELLA SALUTE" 2/2018, pp. 70-90, DOI:10.3280/PDS2018-002008