Browsing by Author "Salom, Rafael"

Now showing items 1-3 of 3

    • Dataset on the psychosocial impact in families with children with developmental and epileptic encephalopathies 

      Salom, Rafael; Aras, Luís Miguel; Piñero, Jessica; Duñabeitia, Jon Andoni (Journal article; Tidsskriftartikkel; Peer reviewed, 2023-08-08)
      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. ...

    • The psychosocial impact of caring for children with Dravet Syndrome 

      Salom, Rafael; Aras, Luis Miguel; Piñero, Jessica; Dunabeitia Landaburu, Jon Andoni (Journal article; Tidsskriftartikkel; Peer reviewed, 2023-08-25)
      This study examined the psychosocial impact on parents of children affected by Dravet Syndrome (DS), a rare drug-resistant developmental encephalopathic epileptic syndrome which affects children at an early age and that involves severe cognitive, behavioral, and motor impairments. DS has a major negative impact on caregivers, mainly on their physical and mental health, and on their social ...

    • Validation of Childhood Rare Epilepsy Social Impact Assessment (CRESIA) to Measure the Social and Family Impact of Rare Childhood Diseases with Epilepsy 

      Salom, Rafael; Aras, Luis Miguel; Piñero, Jessica; Dunabeitia Landaburu, Jon Andoni (Journal article; Tidsskriftartikkel; Peer reviewed, 2022-11-13)
      This study addresses the social relevance of low-prevalence childhood diseases and reports the process of generation and validation of a tool to assess the social impact on the direct family environment and the social context of reference. The aim of the process of construction and validation of this instrument is to provide the field with a tool with the capacity to shed light on the ...