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Soto Jansson J, Bjurulf B, Dellenmark Blom M, Hallbook T, Reilly C.

Caregiver perceptions of the impact of Dravet syndrome on the family, current supports and hopes and fears for the future: A qualitative study

Epilepsy Behav. 2024 Apr 30;156:109790. doi: 10.1016/j.yebeh.2024.109790. Online ahead of print.


These negative impacts concerned: caregiver sleep (e.g., frequent night waking), siblings (e.g., gets less attention/time), social life (e.g., limited vacations), family finances (e.g., limited career progression), parental health (both mental and physical) and need for constant supervision (e.g., child’s need for constant supervision for fear of seizures).



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