Real-world experience of diagnosis, disability, and daily management in parents of children with different genetic developmental and epileptic encephalopathies: a qualitative study
Our results show the need to develop recovery programs that integrate health and social interventions to support parents of children with DEE in the process of diagnosis and disease management.
Authors
- Javier Güeita‐Rodríguez (ORCID: https://orcid.org/0000-0003-4824-5915)
- Domingo Palacios‐Ceña (ORCID: https://orcid.org/0000-0003-0669-6339)
- Cristina Alonso‐Blanco (ORCID: https://orcid.org/0000-0002-6809-6534)
- Cristina García‐Bravo (ORCID: https://orcid.org/0000-0002-6437-6758)
- Jorge Pérez‐Corrales (ORCID: https://orcid.org/0000-0003-3586-2623)
- Ángel Aledo‐Serrano (ORCID: https://orcid.org/0000-0003-4889-3365)
- Juan Francisco Velarde‐García (ORCID: https://orcid.org/0000-0002-5801-4857)
- Carmen Jiménez‐Antona (ORCID: https://orcid.org/0000-0001-9253-8884)
- Romain Marconnot (ORCID: https://orcid.org/0000-0002-5023-3297)
- Juan Nicolás Cuenca‐Zaldívar (ORCID: https://orcid.org/0000-0002-6787-3944)
Institutions
- Universidad Rey Juan Carlos (ES)
- Universidad de Alcalá (ES)
Publication Details
- Journal
- Annals of Medicine
- Published
- 2024-12-28
- DOI
- https://doi.org/10.1080/07853890.2024.2446702
- Citations
- 1
- Primary Topic
- Genetics and Neurodevelopmental Disorders
- Type
- article
- Field-Weighted Citation Impact
- 0.55