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dc.contributor.authorSalom, Rafael
dc.contributor.authorAras, Luís Miguel
dc.contributor.authorPiñero, Jessica
dc.contributor.authorDuñabeitia, Jon Andoni
dc.date.accessioned2023-11-23T10:36:38Z
dc.date.available2023-11-23T10:36:38Z
dc.date.issued2023-08-08
dc.description.abstractCaring 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.en_US
dc.identifier.citationSalom, Aras, Piñero, Duñabeitia. Dataset on the psychosocial impact in families with children with developmental and epileptic encephalopathies. Scientific Data. 2023;10(1):530en_US
dc.identifier.cristinIDFRIDAID 2180942
dc.identifier.doi10.1038/s41597-023-02441-3
dc.identifier.issn2052-4463
dc.identifier.urihttps://hdl.handle.net/10037/31864
dc.language.isoengen_US
dc.publisherSpringer Natureen_US
dc.relation.journalScientific Data
dc.rights.accessRightsopenAccessen_US
dc.rights.holderCopyright 2023 The Author(s)en_US
dc.rights.urihttps://creativecommons.org/licenses/by/4.0en_US
dc.rightsAttribution 4.0 International (CC BY 4.0)en_US
dc.titleDataset on the psychosocial impact in families with children with developmental and epileptic encephalopathiesen_US
dc.type.versionpublishedVersionen_US
dc.typeJournal articleen_US
dc.typeTidsskriftartikkelen_US
dc.typePeer revieweden_US


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Attribution 4.0 International (CC BY 4.0)
Except where otherwise noted, this item's license is described as Attribution 4.0 International (CC BY 4.0)