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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Detalles Bibliográficos
Autores principales: 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
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2020
Materias:
Qualitative Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7412587/
https://www.ncbi.nlm.nih.gov/pubmed/32764084
http://dx.doi.org/10.1136/bmjopen-2019-036502

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