Caring and living with Prader-Willi syndrome in Italy: integrating children, adults and parents’ experiences through a multicentre narrative medicine research

OBJECTIVES: Prader-Willi syndrome (PWS) significantly impacts health-related quality of life; however, its relational and existential aspects remain unknown in Italian clinical and social debate. The project aimed to investigate the impact of PWS on illness experience through narrative medicine (NM)...

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Bibliographic Details
Published in:BMJ Open
Main Authors: Ragusa, Letizia, Crinò, Antonio, Grugni, Graziano, Reale, Luigi, Fiorencis, Alessandra, Licenziati, Maria Rosaria, Faienza, Maria Felicia, Wasniewska, Malgorzata, Delvecchio, Maurizio, Franzese, Adriana, Rutigliano, Irene, Fusilli, Paola, Corica, Domenico, Campana, Giuseppina, Greco, Donatella, Chiarito, Mariangela, Sacco, Michele, Toscano, Silvia, Marini, Maria Giulia
Format: Artigo
Language:Inglês
Published: BMJ Publishing Group 2020
Subjects:
Qualitative Research
Online Access:https://ncbi.nlm.nih.gov/pmc/articles/PMC7412587/
https://ncbi.nlm.nih.gov/pubmed/32764084
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1136/bmjopen-2019-036502
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