CUIDAR A LA PERSONA CON ENFERMEDAD RARA. REVISIÓN INTEGRATIVA
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área temática del cuidador de las personas con enfermedades raras y determinar las tendencias y los retos para la investigación en enfermería. Métodos: Revisión integrada descriptiva, en la que se realizó una búsqueda en bases de datos Ovid, Oxford University Press, Sage, Science Direct, limitada entre los años 2009 – 2020, utilizando términos MeSH y DeCS como rare diseases, family caregiving, care, caregivers, así mismo se buscó cruce con algunas enfermedades específicas (Duchenne syndrome, Lysosomal Storage disease, Genetic disorders, MECP2 duplication syndrome). Resultados: Emergen 3 temas de la tabulación de los datos: Respuestas emocionales que refieren como los cuidadores pueden experimentar diversas emociones. La necesidad de información profesional clara y completa: los autores refieren necesitar información clara sobre la enfermedad y el último tema denominado las estrategias para afrontar la situación de cuidar como esa circunstancia en la que los cuidadores, especialmente de niños generar estrategias para afrontar el cuidado de personas con enfermedades raras. Conclusiones: Las investigaciones muestran como los cuidadores de la persona con enfermedad rara enfrentan grandes desafíos multidimensionales, siendo escasos los estudios que describan específicamente cómo cuida el cuidador principal. Por lo tanto, el iniciar la investigación del fenómeno permitirá a Enfermería construir, desde los ámbitos profesionales, su avance y acrecentar, en un futuro, la garantía de excelencia en los cuidados de la persona con enfermedad rara que limita la movilidad, consiguiendo así que se haga patente en los equipos interdisciplinarios.
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