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"Somos sólo nosotros": experiencias de las familias con la alimentación temporal por sonda: una prospectiva

Claire Reilly^1,2, Jeanne Marshall^1,2, Jasmine Foley¹

¹School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Queensland, Australia.

Nutrition in clinical practice : official publication of the American Society for Parenteral and Enteral Nutrition

|August 21, 2025

Resumen

Los padres que cuidan a los niños con tubos de alimentación temporal necesitan apoyo continuo, ya que a menudo se sienten desprevenidos y se enfrentan a desafíos para manejar los tubos en el hogar. Su viaje implica la evolución de la incertidumbre a la experiencia, lo que pone de relieve la necesidad constante de asistencia profesional y de compañeros.

Área de la Ciencia:

Cuidado de la salud pediátrica
El cuidado de la familia
Apoyo psicosocial

Sus antecedentes:

Cada vez más niños con tubos de alimentación temporales son dados de alta en sus hogares.
El impacto psicosocial en las familias que manejan estos tubos está insuficientemente investigado.
Comprender las necesidades de la familia es crucial para mejorar la atención y reducir la carga del cuidador.

Objetivo del estudio:

Para explorar las experiencias de los padres que cuidan a los niños con tubos de alimentación temporal.
Identificar los desafíos y las necesidades en evolución a lo largo del proceso de alimentación por sonda.

Principales métodos:

Diseño descriptivo cualitativo longitudinal.
Los padres participantes completaron diarios y entrevistas semiestructuradas durante 4 meses.
Análisis inductivo del contenido de las entrevistas y los datos de los diarios.

Principales resultados:

Las familias necesitan un apoyo continuo durante todo el viaje de alimentación por sonda del niño.
Los padres informaron que no estaban preparados y que enfrentaban desafíos persistentes con el manejo de la alimentación por sonda.
Los padres evolucionaron de la incertidumbre inicial a la experiencia autodidacta, con una necesidad constante de apoyo.

Conclusiones:

Se necesitan mejoras sistemáticas, incluida una educación estructurada y un seguimiento coherente.
La experiencia clínica accesible y el apoyo son vitales para las familias.
Abordar estas necesidades puede mejorar el bienestar familiar y los resultados clínicos.

Palabras clave:

Alimentación por vía enteral los padres Educación del paciente pediatría Investigación cualitativa

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