Dataset on the psychosocial impact in families with children with developmental and epileptic encephalopathies
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https://hdl.handle.net/10037/31864Date
2023-08-08Type
Journal articleTidsskriftartikkel
Peer reviewed
Abstract
Caring for children with developmental and epileptic encephalopathies (DEE) can be challenging for
primary caregivers due to the complexity of the condition and the need to provide ongoing care. This
has a psychosocial impact on their quality of life, including increased stress, anxiety, and depression,
as well as an impact on their support network, work, and relationship with the afected child. It is
important that caregivers receive help to manage the psychosocial impact of caring for a child with DEE
and promote their long-term well-being. Besides, it is critical that policymakers receive quantitative
data about this impact to adequately respond to the needs of these families. To this end, a database was
developed using the Childhood Rare Epilepsy Social Impact Assessment (CRESIA) psychosocial impact
measurement instrument to quantitatively assess the quality of life of caregivers.
Publisher
Springer NatureCitation
Salom, Aras, Piñero, Duñabeitia. Dataset on the psychosocial impact in families with children with developmental and epileptic encephalopathies. Scientific Data. 2023;10(1):530Metadata
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