Palabras clave
Enfermedades raras
Pacientes
Cuidadores
Cómo citar
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Resumen
Objetivo: Sintetizar evidencia científica sobre alfabetización en salud para cuidadores y personas con enfermedades raras. Métodos: Revisión integrativa de la literatura, realizada en 06 etapas, en las bases de datos PUBMED, SCOPUS y MEDLINE a través del portal de la BVS, en inglés y portugués, sin límite de tiempo, utilizando los descriptores combinados entre sí a través del operador booleano AND. Resultados: Se obtuvo una muestra de 8 artículos, siendo elegidas 4 categorías: Alfabetización en salud para la producción de materiales de apoyo a familiares, cuidadores y personas con enfermedades raras; Alfabetización en salud en la transición de la atención a personas con enfermedades raras; Alfabetización en salud y calidad de vida relacionada con la salud para personas con enfermedades raras y Alfabetización en salud y empoderamiento en enfermedades raras. Consideraciones finales: La alfabetización en salud en enfermedades raras todavía es escasa a nivel mundial. Es necesario impulsar más estudios para que en el futuro se pueda ampliar con rigor la definición del término alfabetización en salud en el aspecto multidimensional, centrándose en la persona con enfermedad rara en el centro de atención, involucrando a la familia, al cuidador y a la persona con una enfermedad rara para promover sistemas sostenibles y equitativos.
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