Untold stories: A qualitative investigation of patient and family experiences with congenital diaphragmatic hernia
Author / Expert
Alexandra Dimmer, Zanib Nafees, Sabrina Beauseigle, Franco A. Carnevale, Elena Guadagno, Dan Poenaru, Pramod Puligandla
Topic overview
Patient and family perspectives on CDH are infrequently explored, impairing clinicians’ understanding of illness impact on functioning and desired support. We investigated the lived experiences of CDH patients and primary caregivers, including those with neurodevelopmental impairment (NDI), regarding the adequacy of clinical and community support.
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