Publication: Análisis del impacto y organización familiar en el Síndrome de Rett: ansiedad, depresión, inadaptación y resiliencia
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2021-04-06
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Universidad Complutense de Madrid
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Abstract
La presente investigación lleva por título “Análisis del impacto y organización familiar en el Síndrome de Rett”, y tiene como objetivo principal conocer y evaluar el impacto de esta enfermedad rara en la dinámica familiar. Para ello, se plantea la necesidad de analizar factores que podrían ser determinantes en el sistema familiar y conocer en qué se traduce el impacto emocional (niveles de ansiedad, depresión, inadaptación y resiliencia) de una enfermedad rara como es el Síndrome de Rett. Las investigaciones realizadas hasta el momento sobre el Síndrome de Rett revelan grandes avances en el descubrimiento de nuevos genes implicados, pero apenas existen estudios acerca de la realidad familiar. Tomando como punto de inicio ese “gap” que existe en torno al número de investigaciones sobre el Síndrome de Rett y el ámbito familiar, se plantea un estudio pionero en España que dé respuesta a esta realidad. Por su parte, la familia ha demostrado ser un elemento fundamental en el desarrollo de las personas y a la hora de dar respuesta a las necesidades que surgen en torno a la diversidad funcional. Consecuentemente, el sistema familiar es un elemento en continuo proceso de cambio y adaptación para conseguir la estabilidad u homeostasis entre los elementos que lo constituyen e interactúan en él...
The following research is entitled "Analysis of the impact and family organization in relation to Rett Syndrome". The main goal is to know and evaluate the impact of this rare disease on family dynamics. For this, there is a need to analyze factors that could determinate changes in the family system and find out how the emotional impact is reflected (levels of anxiety, depression, maladjustment and resilience) in rare disease as Rett Syndrome.Research carried out on Rett Syndrome reveals great progression due to finding out that new genes are linked to the Syndrome but there are barely any studies currently regarding family experience. Considering this “gap” that exists around the amount of research about Rett Syndrome and family context, here is a pioneering study in Spain that responds to proposed fact. Family has been demonstrated to be a fundamental element in people's development and it also responds to the needs that arise around diseases. Consequently, family system is an element in a continuous process of change, which allows people to achieve stability or homeostasis between the elements that constitute it and interact in it...
The following research is entitled "Analysis of the impact and family organization in relation to Rett Syndrome". The main goal is to know and evaluate the impact of this rare disease on family dynamics. For this, there is a need to analyze factors that could determinate changes in the family system and find out how the emotional impact is reflected (levels of anxiety, depression, maladjustment and resilience) in rare disease as Rett Syndrome.Research carried out on Rett Syndrome reveals great progression due to finding out that new genes are linked to the Syndrome but there are barely any studies currently regarding family experience. Considering this “gap” that exists around the amount of research about Rett Syndrome and family context, here is a pioneering study in Spain that responds to proposed fact. Family has been demonstrated to be a fundamental element in people's development and it also responds to the needs that arise around diseases. Consequently, family system is an element in a continuous process of change, which allows people to achieve stability or homeostasis between the elements that constitute it and interact in it...
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Tesis inédita de la Universidad Complutense de Madrid, Facultad de Educación, Departamento de Métodos de Investigación y Diagnóstico en Educación, leída el 11-12-2020