The seen and unseen facets of Dravet syndrome across the disease trajectory: Insights from European ethnographic research
Families of children with DS have complex and changing challenges related to different phases of their child's development and disease progression. Our findings may assist those working with families to identify key challenges and provide support specific to individual needs. Our findings could help clinicians adapt their communication, ultimately improving the quality of care provided and the quality of life of the different stakeholders.
Authors
- Rima Nabbout (ORCID: https://orcid.org/0000-0001-5877-4074)
- Francesca Darra (ORCID: https://orcid.org/0000-0002-1062-8438)
- P. Diana Afonso
- Carmen Fons (ORCID: https://orcid.org/0000-0001-7227-1350)
- Luís Miguel Aras
- Letizia Nardi
- Marion Danse
- Nils Holert
- Nicola Specchio (ORCID: https://orcid.org/0000-0002-8120-0287)
- Simona Gaberšček
- Liam Dorris (ORCID: https://orcid.org/0000-0002-9502-3154)
- Robert A. Robinson (ORCID: https://orcid.org/0000-0001-9266-8734)
- Caroline Camus (ORCID: https://orcid.org/0000-0002-0788-2267)
- Perrine Hugon
- Nadine Benzler
Institutions
- Hôpital Necker-Enfants Malades (FR)
- Hospital Sant Joan de Déu Barcelona (ES)
- Inserm (FR)
- Great Ormond Street Hospital (GB)
- Royal Hospital for Children (GB)
- Centre Hospitalier Universitaire de Toulouse (FR)
- Azienda Ospedaliera Universitaria Integrata Verona (IT)
- Assistance Publique – Hôpitaux de Paris (FR)
- Navarrabiomed (ES)
- Bambino Gesù Children's Hospital (IT)
- Hôpital Robert-Debré (FR)
- Sant Joan de Déu Research Foundation (ES)
- Sopra (France) (FR)
- Hôpital Paule de Viguier (FR)
- Epilepsiezentrum Kleinwachau Gemeinnützige (DE)
- Biocodex (France) (FR)
- University College London (GB)
- Daimler (Germany) (DE)
Publication Details
- Journal
- Epilepsy & Behavior
- Published
- 2025-11-28
- DOI
- https://doi.org/10.1016/j.yebeh.2025.110809
- Primary Topic
- Epilepsy research and treatment
- Type
- article
- Field-Weighted Citation Impact
- 0.00