The seen and unseen facets of Dravet syndrome across the disease trajectory: Insights from European ethnographic research

how parents cope and manage the information provided to them and the choices they must negotiate as the DS journey evolves. Four key territories of opportunity were identified. Conclusions: 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.