Asociación ApoyoDravet, 20009, San Sebastián, Spain.
Centro de Investigación Nebrija en Cognición (CINC), Facultad de Lenguas y Educación, Universidad Nebrija, 28248, Madrid, Spain.
Sci Data. 2023 Aug 8;10(1):530. doi: 10.1038/s41597-023-02441-3.
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.
照顾患有发育性和癫痫性脑病（DEE）的儿童对于主要照顾者来说可能具有挑战性，因为这种情况的复杂性以及需要持续提供护理。这对他们的生活质量产生了心理社会影响，包括增加的压力、焦虑和抑郁，以及对他们的支持网络、工作和与受影响儿童的关系的影响。重要的是，照顾者应获得帮助来管理照顾患有 DEE 的儿童的心理社会影响，并促进他们的长期幸福感。此外，政策制定者获得有关这种影响的定量数据对于充分满足这些家庭的需求至关重要。为此，使用儿童期罕见癫痫社会影响评估（CRESIA）心理社会影响测量工具开发了一个数据库，以定量评估照顾者的生活质量。
