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 children diagnosed with WHS is unknown. This study aims to characterize the sociodemographic and psychosocial profile of WHS caregivers and analyze how these variables impact their quality of life (QoL) and well-being.

Results

The sociodemographic and clinical profile of 22 Spanish caregivers of children with WHS and the characteristics of those affected have been described. Significant relationships were found between sociodemographic and psychosocial characteristics among caregivers. The impa

SUBMITTER: Berrocoso S 

PROVIDER: S-EPMC7574588 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature