Comprensión de la experiencia de madres que vivencian el cuidado principal de un hijo(a) con discapacidad intelectual
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Fecha
2019
Autores
Hernández Pertuz, Damaris Elena
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Ediciones Universidad Simón Bolívar
Facultad de Ciencias Jurídicas y Sociales
Facultad de Ciencias Jurídicas y Sociales
Resumen
El cuidado es un hecho innato de los seres humanos que garantiza su sobrevivencia. Las personas en condición de Discapacidad Intelectual (DI), requieren de cuidados para realizar actividades vitales debido a las deficiencias en las funciones intelectuales y en la conducta adaptativa que restringen su funcionamiento y su calidad de vida. Estos cuidados son generalmente ofrecidos dentro de su familia, surgiendo la figura del Cuidador y es la madre que por tradición cultural y asignación social se ve obligada a hacerse cargo del rol de cuidador principal (Martínez et al., 2008; Ortiz, 2014; Procel, 2016).
Aunque en Colombia se ha investigado sobre el tema objeto de este estudio, aún la información relacionada es escasa. Ortiz (2014) señala que en este país los estudios sobre el papel del cuidador se han realizado primordialmente en cuidadores de adultos con enfermedades crónicas para medir el impacto del cuidado en su calidad de vida. Además, que las investigaciones en la población infantil no dan cuenta de la serie de cambios y dificultades a los que se ven expuestos sus cuidadores. Por tanto, se considera relevante aportar una comprensión fenomenológica sobre la experiencia, el significado y la manera cómo afrontan las madres que asumen el cuidado principal de un hijo (a) con DI y así, hacer una aproximación de este fenómeno a partir de su significado desde la perspectiva elaborada conjuntamente por quienes la vivencian.
Care is an innate fact of human beings that guarantees their survival. People in condition of Intellectual Disability (ID), require care to perform vital activities due to deficiencies in intellectual functions and adaptive behavior that restrict their functioning and quality of life. These cares are generally offered within his family, emerging the figure of the Caregiver and is the mother who by cultural tradition and social assignment is forced to take over the role of primary caregiver (Martinez et al., 2008; Ortiz, 2014; Procel, 2016). Although research on the subject of this study has been investigated in Colombia, related information is still scarce. Ortiz (2014) points out that in this country studies on the role of the caregiver have been carried out primarily in caregivers of adults with chronic diseases to measure the impact of care on their quality of life. In addition, that research in the child population does not account for the series of changes and difficulties to which their caregivers are exposed. Therefore, it is considered relevant to provide a phenomenological understanding of the experience, the meaning and the way in which mothers who assume the primary care of a child with ID face, and thus, make an approximation of this phenomenon from the understanding of its meaning from the perspective developed jointly by those who experience it.
Care is an innate fact of human beings that guarantees their survival. People in condition of Intellectual Disability (ID), require care to perform vital activities due to deficiencies in intellectual functions and adaptive behavior that restrict their functioning and quality of life. These cares are generally offered within his family, emerging the figure of the Caregiver and is the mother who by cultural tradition and social assignment is forced to take over the role of primary caregiver (Martinez et al., 2008; Ortiz, 2014; Procel, 2016). Although research on the subject of this study has been investigated in Colombia, related information is still scarce. Ortiz (2014) points out that in this country studies on the role of the caregiver have been carried out primarily in caregivers of adults with chronic diseases to measure the impact of care on their quality of life. In addition, that research in the child population does not account for the series of changes and difficulties to which their caregivers are exposed. Therefore, it is considered relevant to provide a phenomenological understanding of the experience, the meaning and the way in which mothers who assume the primary care of a child with ID face, and thus, make an approximation of this phenomenon from the understanding of its meaning from the perspective developed jointly by those who experience it.
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Palabras clave
Comprensión, Experiencia, Cuidado, Madres cuidadoras principales, Discapacidad Intelectual, Understanding, Experience, Care, Primary care mothers, Intellectual disability