Breaking the silence: A qualitative exploration of parental perspectives of children with Goldenhar Syndrome.

ABSTRACT:

Background

Goldenhar Syndrome is a rare congenital condition, typically characterized by craniofacial abnormalities and vertebral malformations. Due to its rare and complex nature, the etiology is unconfirmed, resulting in parental uncertainty and subsequent emotional sequelae. Clinical manifestations have been researched but few studies have explored parental wellbeing and Quality of Life (QoL). In this qualitative study, we explore parental views of the challenges and lived experience of raising a child with Goldenhar Syndrome.

Methods

Ten biological parents (five mothers and five fathers), recruited at the Goldenhar UK Conference, took part in audio-recorded, semi-structured interviews. Interviews explored emotional wellbeing, views surrounding causation, support accessed

SUBMITTER: Hitchen R 

PROVIDER: S-EPMC10839885 | biostudies-literature | 2024 Feb

REPOSITORIES: biostudies-literature