Real-world experience of diagnosis, disability, and daily management in parents of children with different genetic developmental and epileptic encephalopathies: a qualitative study

Real-world experience of diagnosis, disability, and daily management in parents of children with different genetic developmental and epileptic encephalopathies: a qualitative study

Purpose This study describes the experience of parents of children with developmental and epileptic encephalopathies (DEE) and how the disease impacts their daily lives.Materials and methods A descriptive qualitative study was conducted using purposeful sampling. Twenty-one parents of children with...

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Bibliographic Details
Main Authors: Cristina Garcia-Bravo, Domingo Palacios-Ceña, Ángel Aledo-Serrano, Javier Güeita-Rodríguez, Juan Francisco Velarde-García, Juan Nicolas Cuenca-Zaldivar, Romain Marconnot, María Cristina Alonso-Blanco, Jorge Pérez-Corrales, Carmen Jimenez-Antona
Format: Article
Language:English
Published: Taylor & Francis Group 2025-12-01
Series:Annals of Medicine
Subjects:
Caregivers
disability
epilepsy
neurodevelopmental disorders
parents
qualitative research
Online Access:https://www.tandfonline.com/doi/10.1080/07853890.2024.2446702
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