Impacto familiar de la severidad de la dermatitis atópica en menores de 12 años / Family impact of the severity of atopic dermatitis in children under 12 years

Contexto: la dermatitis atópica es una enfermedad de etiología desconocida, con predisposición genética y participación de factores ambientales. Más del 80% de niños afectados debutan antes de los 5 años de edad. No se disponen en el país reportes que demuestren la relación entre la severidad de la enfermedad y el impacto familiar que genera la misma. Objetivo: determinar el grado de afectación familiar en niños diagnosticados de dermatitis atópica que acudieron a la consulta externa del "Centro de la Piel" y su relación con la severidad de la enfermedad. Diseño: estudio epidemiológico analítico transversal de período. Métodos y sujetos: el estudio se realizó en niños menores de 12 años que acudieron a la consulta médica del "Centro de la Piel", con diagnóstico de dermatitis atópica entre julio a noviembre del 2015. Se empleó un muestreo aleatorio simple para universo infinito con objetivo cualitativo. La severidad de la dermatitis atópica se clasificó según la escala validada SCORAD. El impacto familiar se determinó con el cuestionario del impacto familiar de la dermatitis DFI y la funcionalidad familiar con la escala de APGAR familiar. Lasasociaciones entre las variables estudiadas se resumieron con Odds Ratio de prevalencia (OR) y los correspondientes intervalos de confianza del 95% (IC 95%) obtenidos mediante distribución binomial. Para el contraste de hipótesis, se calculó el coeficiente de correlación de Pearson. Resultados: el estudio reveló que de los 145 participantes, 34 (23,45%) presentaron dermatitis atópica leve, 94 (64,83%) moderada y 17 (11,72%) severa. Se encontró que en más de la mitad de familias investigadas (57,24%) el impacto familiar de la enfermedad fue moderado, 33.1% leve y 9,66% severo. Al relacionar las variables, se demostró que el grado de afectación familiar es proporcional a la severidad de la dermatitis, estadísticamente significativa (valor p= <0,01). La esfera familiar de mayor afectación fue la económica evidenciándose la relación existente entre agravamiento del cuadro con el incremento de los gastos derivados del tratamiento (OR: 5,5; IC 95%: 2,4-12,6). Conclusión: la severidad de la dermatitis atópica se relacionó significativamente con el nivel de impacto familiar percibido por el cuidador. (AU)

Context: Atopic dermatitis is a disease of unknown etiology, with genetic predisposition and participation of environmental factors. More than 80% of affected children debu-tan before 5 years of age. There are no reports in the country that demonstrate the relationship between the severity of the disease and the family impact generated by it. Objective: to determine the degree of family involvement in children diagnosed with atopic dermatitis who attended the outpatient clinic of the "Skin Center" and its relationship with the severity of the disease. Design: cross-sectional analytical epidemiological study of period. Methods and subjects: the study was conducted in children under 12 years of age who attended the "Skin Center" medical consultation, with a diagnosis of atopic dermatitis from July to November 2015. Simple random sampling was used. for infinite universe with qualitative objective. MAIN MEASUREMENTS: the severity of atopic dermatitis was classified according to the SCORAD scale. The family impact was determined with the family impact questionnaire of DFI dermatitis and family functionality with the family APGAR scale. The associations between the variables studied were summarized with Odds Prevalence Ratio (OR) and the corresponding 95% confidence intervals (95% CI) obtained by binomial distribution. For the hypothesis test, the Pearson correlation coefficient was calculated. Results: the study revealed that of the 145 participants, 34 (23.45%) presented mild atopic dermatitis, 94 (64.83%) moderate and 17 (11.72%) severe. It was found that in more than half of the families investigated (57.24%) the family impact of the disease was moderate, 33.1% mild and 9.66% severe. By relating the variables, it was shown that the degree of family involvement is proportional to the severity of the dermatitis, statistically significant (p value = <0.01). The most affected family sphere was the economic one, showing the relationship between worsening of the table and the increase in the expenses derived from the treatment (OR: 5.5, 95% CI: 2.4-12.6). Conclusion: the severity of atopic dermatitis was significantly related to the level of family impact perceived by the caregiver. (AU)

El impacto familiar en pacientes con epilepsia benigna de la infancia / Family impact on children with benign childhood epilepsy

La epilepsia constituye un factor de estrés en la vida del niño y su familia. Ambos deben desarrollar estrategias de afrontamiento dentro de un sistema que incluye al niño, a su familia y al entorno social, educativo y médico, y que no siempre resultan adaptativas. Si bien en el ámbito internacional se han realizado numerosos estudios que han podido demostrar que muchos niños con epilepsia ven afectadas sus funciones mentales, sus emociones y conducta; muy pocas investigaciones se propusieron explorar la relación existente entre psicopatología y tipo de epilepsia. En el caso de la Epilepsia Benigna de la Infancia (E.B.I.), no se dispone información sistemática que permita esclarecer su relación con trastornos psicopatológicos en niños, ni tampoco la repercusión de la enfermedad en la familia. El impacto que los trastornos epilépticos pueden tener sobre la vida del niño y su familia es un dato de observación clínica hallado en forma frecuente, durante el seguimiento de estos pacientes. Es común encontrar que muchos padres de niños epilépticos se vuelven sobreprotectores, restringiendo la actividad del niño y su autonomía. La falta de exposición a situaciones sociales así como una disminución de las expectativas y demandas hacia estos niños pueden dificultar el desarrollo de herramientas adecuadas de interacción social, lo cual repercute negativamente en la autoestima. En algunas ocasiones el status que asume el paciente en esta situación lo limita más aún que la propia epilepsia. Varios estudios han demostrado que el funcionamiento familiar es un poderoso predictor del funcionamiento psicológico en niños con enfermedades crónicas. Este trabajo se propone conocer el impacto de la enfermedad en el grupo de pacientes con epilepsia benigna de la infancia (AU)

Epilepsy is a factor of stress for the child and his or her family. Both need to develop coping strategies within a system that includes the child, the family, and the social, educational, and medical environment, which do not always adapt to the situation. Although multiple international studies have been conducted showing that in many children with epilepsy cognitive function, emotion, and behavior are affected, few studies have evaluated the association between psychopathology and type of epilepsy. In benign childhood epilepsy (BCI) there are no systematic data to clarify its association with psychopathological disorders in children or the impact of the disease on the family. The impact these epileptic disorders have on the life of the child and their family is an often observed clinical finding in the follow-up of these patients. The parents of children with epilepsy often become overprotective, limiting the activities and autonomy of the child. The lack of exposure in social settings as well as decreased expectations and demands from the parents affect the development of adequate social interaction tools with a negative impact on self-esteem. The latter of which may limit the patient more than the epilepsy itself. Several studies have shown that family functioning is a powerful predictor of psychological performance of children with chronic diseases. The aim of the present study was to evaluate the impact of the disease in a cohort of patients with BCE (AU)

Impacto familiar e ajustamento de pais de crianças com diagnóstico de anomalia congênita: influência dos determinantes da criança / Family impact and individual adjustment of parents of children with a diagnosis of congenital anomaly: the influence of the child's determinants

INTRODUÇÃO: A ocorrência de diagnóstico pré ou pós-natal de anomalia congênita (AC) num filho pode implicar mudanças na dinâmica e no funcionamento da família, bem como ter um importante impacto no ajustamento individual dos pais. OBJETIVOS: Este estudo teve como objetivos avaliar a sobrecarga parental e ajustamento individual de pais de crianças com diagnóstico de AC e compreender a variabilidade da adaptação dos pais (sobrecarga e ajustamento individual) em função dos determinantes da criança. MÉTODOS: A amostra foi constituída por 124 participantes (62 casais), pais de crianças com diagnóstico de AC. O protocolo de avaliação incluiu a Escala de Impacto Familiar, o Brief Symptom Inventory e o Instrumento de Avaliação de Qualidade de Vida da Organização Mundial de Saúde (WHOQOL-Bref). RESULTADOS: As mães reportaram maiores níveis de sintomatologia psicopatológica e menor percepção de qualidade de vida. Encontraram-se, ainda, efeitos significativos dos determinantes da criança, nomeadamente da idade da criança no ajustamento paterno e da percepção de gravidade da anomalia no ajustamento paterno e na sobrecarga materna. O conhecimento do diagnóstico após o nascimento e as anomalias cromossômicas mostraram-se, em ambos os pais, correlacionados com maior percepção de sobrecarga global e financeira. CONCLUSÃO: Os resultados salientam a complexidade do ajustamento dos pais ao diagnóstico de anomalia congênita de um filho, na qual interagem diversos fatores, em particular os associados com o diagnóstico da criança.

BACKGROUND: The occurrence of a pre- or postnatal diagnosis of a congenital anomaly may imply changes in the family dynamics and functioning, and may have an important impact on the parents' individual adjustment. OBJECTIVES: This study aimed to assess the perceived burden and individual adjustment of parents whose child has a congenital anomaly, and to examine the variability of parental adaptation (burden and individual adjustment) as a function of the child's characteristics. METHODS: The sample comprised 124 parents (62 couples), whose child has a congenital anomaly. The assessment protocol included the Impact on Family Scale, the Brief Symptom Inventory, and the World Health Organization quality of life instrument (WHOQOL-Bref). RESULTS: Mothers reported higher scores on psychopathological symptoms and lower scores on quality of life than fathers. A significant effect of child's age in the paternal adaptation was found; the perception of the severity of the anomaly was significantly associated with paternal adjustment and with maternal burden. In both parents, the timing of diagnosis and the type of congenital anomaly were significantly correlated with global and financial burden. DISCUSSION: These findings support the complexity of the parents' adaptation when parenting a child with a congenital anomaly, in which several factors interact, particularly those associated with the child's diagnosis.