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きょうだい支援を広める会
ドラベ症候群が家族に与える影響、現在のサポート、将来への希望と不安に関する介護者の認識：質的研究
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.
38692022
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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