Publication: Ansiedad en familias con hijas con Síndrome de Rett
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2017-07-11
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Abstract
El objetivo principal en esta investigación fue conocer y evaluar los niveles de ansiedad en familias que conviven con niñas con Síndrome de Rett dentro del contexto de la Atención Temprana (0-6 años). Así mismo, se planteó como objetivo conocer qué necesidades y apoyos reciben las familias por parte de profesionales de la Atención Temprana, como su participación en actividades que ofrecen las diferentes asociaciones y/o fundaciones.
Para ello se planteó una investigación de corte cuantitativo, que parte de una serie de hipótesis relacionadas con el apoyo del cuidador/a, niveles de ansiedad así como la edad de la niña entre otras. La muestra que participó en la investigación, corresponde a 14 familias con hijas con Síndrome de Rett entre los 0-6 años y pertenecientes a diferentes provincias de España. Para la recogida de información, se diseñó un cuestionario de 25 ítems que recopiló información sobre datos sociodemográficos, necesidades de las familias y apoyos que reciben las familias entre otras. Dicho cuestionario fue validado por una comisión de expertas de la Universidad Complutense de Madrid. Como variable principal de la investigación, se plantó conocer los niveles de ansiedad a través de los 7 ítems de la Escala HAD-A, conocida como Escala Hospitalaria de Ansiedad.
The main focus of this study was to assess and evaluate anxiety levels in relatives of families who live with girls who have been diagnosed with Rett Syndrome, within Early Intervention (0-6 years old). In addition, another key point of this work was to get an insight into the needs and support that families receive from professionals within Early Intervention, such as their participation in activities offered by different associations or foundations. In order to do so, a qualitative research project was designed based on several hypothesis related to burnout and support of the main carer, anxiety levels and the age of the girl, among others. The sample that participated in the investigation, are 14 families from different Spanish provinces, who have a daughter with Rett Syndrome aged between 0-6 years old and belonging to different Spain provinces. For the collection of information, was designed a questionnaire containing 25 items which gathers information about sociodemographic data, families' needs and any support received. This questionnaire was validated by a commission of experts from Complutense University of Madrid. The main research variable was to get to know the levels of anxiety through 7 items from the scale HAD-A, known as The Hospital Anxiety and Depression Scale.
The main focus of this study was to assess and evaluate anxiety levels in relatives of families who live with girls who have been diagnosed with Rett Syndrome, within Early Intervention (0-6 years old). In addition, another key point of this work was to get an insight into the needs and support that families receive from professionals within Early Intervention, such as their participation in activities offered by different associations or foundations. In order to do so, a qualitative research project was designed based on several hypothesis related to burnout and support of the main carer, anxiety levels and the age of the girl, among others. The sample that participated in the investigation, are 14 families from different Spanish provinces, who have a daughter with Rett Syndrome aged between 0-6 years old and belonging to different Spain provinces. For the collection of information, was designed a questionnaire containing 25 items which gathers information about sociodemographic data, families' needs and any support received. This questionnaire was validated by a commission of experts from Complutense University of Madrid. The main research variable was to get to know the levels of anxiety through 7 items from the scale HAD-A, known as The Hospital Anxiety and Depression Scale.