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Dataset on the psychosocial impact in families with children with developmental and epileptic encephalopathies
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 depress...
Autores principales: | , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Nature Publishing Group UK
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10409801/ https://www.ncbi.nlm.nih.gov/pubmed/37553365 http://dx.doi.org/10.1038/s41597-023-02441-3 |
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author | Salom, Rafael Aras, Luís Miguel Piñero, Jessica Duñabeitia, Jon Andoni |
author_facet | Salom, Rafael Aras, Luís Miguel Piñero, Jessica Duñabeitia, Jon Andoni |
author_sort | Salom, Rafael |
collection | PubMed |
description | 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 affected 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. |
format | Online Article Text |
id | pubmed-10409801 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | Nature Publishing Group UK |
record_format | MEDLINE/PubMed |
spelling | pubmed-104098012023-08-10 Dataset on the psychosocial impact in families with children with developmental and epileptic encephalopathies Salom, Rafael Aras, Luís Miguel Piñero, Jessica Duñabeitia, Jon Andoni Sci Data Data Descriptor 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 affected 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. Nature Publishing Group UK 2023-08-08 /pmc/articles/PMC10409801/ /pubmed/37553365 http://dx.doi.org/10.1038/s41597-023-02441-3 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . |
spellingShingle | Data Descriptor Salom, Rafael Aras, Luís Miguel Piñero, Jessica Duñabeitia, Jon Andoni Dataset on the psychosocial impact in families with children with developmental and epileptic encephalopathies |
title | Dataset on the psychosocial impact in families with children with developmental and epileptic encephalopathies |
title_full | Dataset on the psychosocial impact in families with children with developmental and epileptic encephalopathies |
title_fullStr | Dataset on the psychosocial impact in families with children with developmental and epileptic encephalopathies |
title_full_unstemmed | Dataset on the psychosocial impact in families with children with developmental and epileptic encephalopathies |
title_short | Dataset on the psychosocial impact in families with children with developmental and epileptic encephalopathies |
title_sort | dataset on the psychosocial impact in families with children with developmental and epileptic encephalopathies |
topic | Data Descriptor |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10409801/ https://www.ncbi.nlm.nih.gov/pubmed/37553365 http://dx.doi.org/10.1038/s41597-023-02441-3 |
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