La rappresentazione narrativa della malattia rara: uno studio qualitativo sulle esperienze dei pazienti

Abstract

Narrative representation of rare disease: a qualitative study on experiences of patients. This paper proposes a study on narratives of patients with rare diseases in order to explore specific emotional dimensions, in terms of common needs, resources, expectations that characterize illness experience. Thirty-two illness stories of patients with rare diseases were analyzed by Emotional Text Analysis (AET), that is a methodology consenting to detect some shared symbolicaffective dynamics (Cultural Repertoires). The analysis identified four Cultural Repertoires which make up the representation of emotional experience of rare disease which concern respectively the profound experience of powerlessness, the growing need for autonomy, the search for normality and recovery expectations. The study also revealed some differences depending on sex and type of diagnosis, included as illustrative variables related to textual data. The work outlines possible intervention features to reconsider the offer of socio-health services for patients with rare diseases, with a view to promoting the quality of life and a better adaptation to the context