Significados que personas adultas con Síndrome de Down y sus familias le atribuyen a la autonomía y su relación con el proceso de inclusión : un estudio fenomenológico en participantes de una organización no gubernamental
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Fecha
2017
Autores
Alvarado Vargas, Camila Victoria
Avilés Manthey, Carolina Alejandra
Muñoz Morales, Catalina Ivonne
Sepúlveda Ramos, Antonino Alberto
Profesor/a Guía
Facultad/escuela
Idioma
es
Título de la revista
ISSN de la revista
Título del volumen
Editor
Universidad Andrés Bello
Nombre de Curso
Licencia CC
Licencia CC
Resumen
Esta investigación se basa en metodología cualitativa con enfoque fenomenológico, en la que a través del establecimiento de diálogo, se busca que tanto las personas adultas con Síndrome de Down entrevistadas, como sus padres, sean capaces de expresar qué significado le atribuyen a la autonomía y su relación con el proceso de inclusión. Para la producción de información, se decidió utilizar entrevistas semiestructuradas con dos modalidades paralelas, tanto para padres como para personas adultas con Síndrome de Down, con el objetivo de que éstos sean partícipes del proceso de investigación. De este modo realizamos cuatro entrevistas, de las cuales dos corresponden a entrevistas a adultos con Síndrome de Down y dos entrevistas a los padres. Elaboramos un guion con cuatro temáticas: 1) cómo los participantes perciben y comprenden los conceptos de autonomía e inclusión; 2) cómo identifican los elementos que forman parte de su autonomía; 3) conocer cómo se relacionan con el ocio y 4) conocer cómo se relacionan con el trabajo. Para el análisis, se utilizó el software ATLAS/ti, programa informático de análisis cualitativo de datos textuales el cual arrojó 46 códigos relacionados con los principales temas de investigación, emergiendo seis categorías: Autonomía, autodeterminación, inclusión, ocio, trabajo y entorno.
Es conocido el rol del kinesiólogo en la infancia de personas con Síndrome de Down, basado principalmente en la estimulación psicomotriz y la promoción del máximo desarrollo del niño o niña. Sin embargo es desconocido lo que ocurre en otras etapas de la vida, por lo que buscamos herramientas que nos permitan ampliar el quehacer kinésico, yendo más allá de la rehabilitación física y acompañando a la persona con Síndrome de Down a lo largo de su ciclo vital y en diversos aspectos, como por ejemplo, ampliar nuestra formación en el ámbito social para poder enfocarnos en promover una verdadera inclusión, donde cada persona se encuentre en igualdad de condiciones y derechos, logrando así desarrollar y poner en práctica nuestra labor integral, interdisciplinaria y enfocada en el modelo biopsicosocial. Con esta investigación queremos hacer una contribución a lo anteriormente mencionado.
This research corresponds to a qualitative methodology with a phenomenological approach, in which through the establishment of dialogue, it is sought that the adults with Down Syndrome interviewed, like their parents, be able to express the meaning attributed to autonomy and their relationship with the inclusion process. For the production of information, semi-structured means with parallel forms should be used, both for parents and for adults with Down Syndrome, with the aim of being part of the research process. In this way, we conducted four interviews, of which two correspond to the interviews with the Down Syndrome and two of the interviews with the parents. We developed a guide with four themes, the first of which consists of how the concepts of autonomy and inclusion are perceived and understood, how to identify the elements that are part of their autonomy, how they can be related to leisure and work. For the analysis, the program ATLAS / ti, the computer program of qualitative analysis of textual data was used, which produced 46 categories related to the main research topics, emerging six categories: Autonomy, self-determination, inclusion, leisure, work, and environment. The role of the physical therapist in the childhood of people with Down Syndrome is known, based mainly on the psychomotor field and the promotion of the child's maximum development. However, it is unknown what happens in other stages of life, so we look for tools that allow us to expand the kinesiological duty, going beyond physical rehabilitation and accompanying the person with Down. Syndrome throughout its cycle vital and in various aspects, such as expanding our training in the social field to focus on promoting true inclusion, where each person is in equal conditions and rights, thus being able to develop and implement our comprehensive, interdisciplinary work and focused on the biopsychosocial model.
This research corresponds to a qualitative methodology with a phenomenological approach, in which through the establishment of dialogue, it is sought that the adults with Down Syndrome interviewed, like their parents, be able to express the meaning attributed to autonomy and their relationship with the inclusion process. For the production of information, semi-structured means with parallel forms should be used, both for parents and for adults with Down Syndrome, with the aim of being part of the research process. In this way, we conducted four interviews, of which two correspond to the interviews with the Down Syndrome and two of the interviews with the parents. We developed a guide with four themes, the first of which consists of how the concepts of autonomy and inclusion are perceived and understood, how to identify the elements that are part of their autonomy, how they can be related to leisure and work. For the analysis, the program ATLAS / ti, the computer program of qualitative analysis of textual data was used, which produced 46 categories related to the main research topics, emerging six categories: Autonomy, self-determination, inclusion, leisure, work, and environment. The role of the physical therapist in the childhood of people with Down Syndrome is known, based mainly on the psychomotor field and the promotion of the child's maximum development. However, it is unknown what happens in other stages of life, so we look for tools that allow us to expand the kinesiological duty, going beyond physical rehabilitation and accompanying the person with Down. Syndrome throughout its cycle vital and in various aspects, such as expanding our training in the social field to focus on promoting true inclusion, where each person is in equal conditions and rights, thus being able to develop and implement our comprehensive, interdisciplinary work and focused on the biopsychosocial model.
Notas
Tesis (Kinesiólogo)
Palabras clave
Síndrome de Down, Aspectos Sociales, Investigaciones, Chile