The psychosocial impact of caring for children with Dravet Syndrome.

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 relationships and economic resources. Similarly, it has been suggested that the quality of life of caregivers and children with DS is lower compared to the general population, especially because of the severe and frequent seizures suffered by the child, leaving caregivers with heavy burdens. The main aim of the current study was to assess in detail the psychosocial impact that having a child with DS represents for their parents or caregivers. To this end, a standardized assessment tool was used, and the results were compared to those of a control group. The results highlighted critical differences in most of the areas explored, revealing a marked difference between parents caring of children with DS and parents of normotypically developing children in the psychosocial wellness. This study provides important qualitative data to help us understand and identify the complexity of DS.

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 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.

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

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 social consequences of suffering from a low-prevalence disease, specifically those comorbid with treatment-resistant epileptic seizures of childhood origin. The instrument here presented and called CRESIA (acronym derived from Childhood Rare Epilepsy Social Impact Assessment) provides valuable information on six specific areas framing health, economic, psychological, social, and child-related stressors, as well as family. CRESIA represents a valid and reliable instrument for family members or primary caregivers of children and adolescents with childhood rare epilepsy.

Intervención psicológica con hijos de padres separados: experiencia de un Punto de Encuentro Familiar / Psychological intervention with children of separated parents: experience of a Family Meeting Point

El objetivo del trabajo es examinar el funcionamiento de un Punto de Encuentro Familiar, así como presentar un estudio descriptivo de sus usuarios. Un Punto de Encuentro es un recurso neutral para las familias que en su proceso de ruptura precisan de apoyo técnico e institucional. Facilita las relaciones entre los hijos menores de edad con el progenitor no custodio. Psicólogos y educadores proporcionan una intervención temporal reestableciendo los vínculos entre el menor y el progenitor con el que no convive. La muestra del estudio está compuesta por 71 casos registrados durante 12 meses. Los menores responden al siguiente perfil: ligero predominio del sexo masculino y rango de edad de 6 meses a 12 años. Se analizan los problemas psicológicos más frecuentes detectados en los menores. La observación de la conducta de los niños revela una mejoría en la relación entre padres e hijos desde que acuden al Punto de Encuentro, así como una menor conflictividad entre ambos progenitores. La alta remisión de casos al Punto de Encuentro Familiar y los beneficios observados en el bienestar de los menores respaldan la necesidad de este tipo de servicios

The goal of this work is to examine the functioning of a Family Meeting Point and presenting a descriptive study of their users. A Family Meeting Point is a neutral resource for the families that in their process of divorce require technical and institutional support. It facilitates the relation between the children and the non custodial father. Psychologists and educators provide a temporary intervention reestablishing the relation between the child and the non custodial father. The sample of the study is composed of 71 cases registered for 12 months. The sample has the following characteristics: light predominance of boys and range of age from 6 months to 12 years. The most common psychological problems in children are examined. The observation of the children behaviour shows an improvement in their relation with the non custodial father since they come to the Family Meeting Point, as well as a minor conflict between both parents. The high number of cases in the Family Meeting Point and the benefits observed in the wellbeing of children support the need for this type of services

¿Cómo perciben los niños la ruptura familiar? Aplicación del test del dibujo de la familia en una muestra de hijos de padres separados / How do children perceive family breakdown? Application of the family drawing test to a sample of children with divorced parents

La ruptura conyugal implica la reestructuración familiar, que afecta considerablemente a los hijos menores de edad y puede generar en ellos determinados problemas psicológicos. El estudio examina cómo perciben los niños el divorcio, aplicando el Test del Dibujo de la Familia en una muestra de 28 niños de 6 a 8 años de edad afectados por desavenencias graves entres sus padres. Los resultados muestran que el hecho de que en la mayoría de casos la custodia del niño la posea la madre condiciona su percepción de la familia (AU)

Parental divorce implies a family reorganisation which has a considerable effect on children, an can generate certain psychological disorders in them. This study applies the Family Drawing Test to a sample of 28 children, between 6 and 8 years of age, affected by severe discordance between their parents, and it examines how they perceive divorce. The results reveal that the fact that the majority of children have a mother-custody conditions their perception of the family (AU)