Discursive dynamics in restructuring parental roles in families with rare disease
Discursive dynamics in restructuring parental roles in families with rare disease 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.