Coping with Wolf-Hirschhorn syndrome: quality of life and psychosocial features of family carers

Coping with Wolf-Hirschhorn syndrome: quality of life and psychosocial features of family carers

Abstract Background Wolf-Hirschhorn Syndrome (WHS) is a rare, congenital disease characterized by a distinctive facial phenotype, seizures, intellectual disability and developmental delay, and pre and postnatal growth requiring lifelong care. The psychosocial status of the family caregivers of child...

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Bibliographic Details
Main Authors: Sarah Berrocoso, Imanol Amayra, Esther Lázaro, Oscar Martínez, Juan Francisco López-Paz, Maitane García, Manuel Pérez, Mohammad Al-Rashaida, Alicia Aurora Rodríguez, Paula Maria Luna, Paula Pérez-Núñez, Raquel Blanco, Julián Nevado
Format: Article
Language:English
Published: BMC 2020-10-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Wolf-Hirschhorn syndrome
4p deletion
Caregivers
Quality of life
Coping
Depression
Online Access:http://link.springer.com/article/10.1186/s13023-020-01476-8

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http://link.springer.com/article/10.1186/s13023-020-01476-8

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