@masterThesis{10818/54070,
year = {2023},
month = {1},
url = {http://hdl.handle.net/10818/54070},
abstract = {Durante el abordaje de la discapacidad, las instituciones y la sociedad se han centrado de manera casi exclusiva en el bienestar del paciente, dejando relegada la calidad de vida del cuidador. Teniendo en cuenta la importancia del bienestar de los cuidadores para atender adecuadamente las necesidades de las personas que cuidan, esta investigación tiene como objetivo identificar cuáles son los aspectos que afectan la vida cotidiana de un cuidador principal familiar o informal de una persona con Síndrome de Cornelia de Lange. El presente estudio es de tipo cualitativo desde un paradigma interpretativo, por lo que sigue como estrategia la teoría fundamentada, para la comprensión de la información. Las participantes fueron 5 mujeres que hacen parte de la fundación Cornelia de Lange Colombia, ubicado en la categoría de muestreo no probabilístico por conveniencia y no aleatorio. Como instrumento de recolección de datos se aplicó una entrevista semiestructurada que fue organizada en 5 temáticas previas, como guía para orientar las conversaciones: conocimiento como cuidador, estilo de vida como cuidador, proyección, cambios y dificultades y derechos en salud. Se diseñó un total de 16 preguntas. El medio por el cual se desarrollaron estas entrevistas, fue la plataforma de comunicación “teams”, creando sesiones de entrevista individual que fueron grabadas con previa autorización del participante mediante el consentimiento informado que fue aceptado a través del medio virtual “Google forms”.},
abstract = {With disability, institutions and society have focused on the well-being of the 
patient rather than their caregiver. For this reason, this research aims to what are 
the aspects that affect the daily life of a primary family or informal caregiver of a 
person with Cornelia de Lange Syndrome. For this, the present study is of a 
qualitative type focused on grounded theory, with the collaboration of 5 
participating women who are part of the Cornelia de Lange Colombia Foundation, 
located in the category of non-probabilistic sampling for convenience and non random. As a data collection instrument, a semi-structured interview was applied 
that was organized into 5 previous themes, as a guide to guide the conversations: 
knowledge as a caregiver, lifestyle as a caregiver, projection, changes and difficulties, and health rights. A total of 16 questions were designed. The means by 
which these interviews were carried out was using the "teams" communication 
platform, creating individual interview sessions that were recorded with the prior 
authorization of the participant through the informed consent that was accepted 
through the virtual medium "Google forms". As a result of the coding process, an 
emerging categorization was built, expanding the initials, where the data obtained 
was divided into 5 categories: knowledge about CdLS, institutional and family 
support, needs and emotional affectation of the caregiver, changes, project and 
quality of life, and learning and experience regarding the role. In conclusion, it can 
be said that the main reasons for affecting the daily life of the caregiver of a child 
with CdLS are the lack of knowledge about the disease, the lack of family support, 
the lack of a specialized health service for caregivers of people with CdLS and 
abandoning their jobs and their studies with the consequent economic difficulty 
since expenses are also increased, with the consequent decrease in quality of life.},
publisher = {Universidad de La Sabana},
title = {Dimensiones del rol que afectan la vida cotidiana del cuidador principal familiar},
author = {González Zuluaga, Vanessa Tatiana},
}