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Empoderamiento a través de límites estructurados: un modelo integral para fomentar una alimentación equilibrada y el
Citrine Elatrash1, Colleen Macke2, Jenna Shi3
1Department of Pediatrics, USDA/ARS Children's Nutrition Research Center, Baylor College of Medicine, 1100 Bates St., Houston, TX 77030 USA.
Journal of rare diseases (Berlin, Germany)
|January 16, 2026
Resumen
Los cuidadores utilizan límites estructurados para ayudar a las personas con síndrome de Smith-Magenis (SMS) a controlar la ingesta de alimentos y reducir los comportamientos disruptivos. Estas estrategias empoderan a las personas con SMS a través de la elección dentro de límites definidos.
Área de la Ciencia:
- Ciencias de la Conducta; Genética; Pediatría
Sus antecedentes:
- El control de la obesidad en trastornos genéticos complejos presenta desafíos únicos.
- El síndrome de Smith-Magenis (SMS) implica problemas cognitivos, de ansiedad, conductuales y del sueño que complican el tratamiento de la obesidad.
- Existe una investigación limitada sobre las estrategias de los cuidadores para el control de la ingesta de alimentos en el SMS.
Objetivo del estudio:
- Identificar y describir estrategias exitosas de los cuidadores para controlar la ingesta de alimentos en personas con SMS.
- Explorar las barreras y los facilitadores del control de la obesidad en la población con SMS.
- Proporcionar información basada en evidencia para apoyar a las personas con SMS y a sus cuidadores.
Principales métodos:
- Análisis temático cualitativo de entrevistas grupales con 23 cuidadores de 21 personas con SMS.
- Enfoque de análisis temático híbrido para identificar temas generales y estrategias específicas.
- La recopilación de datos se centró en intervenciones exitosas reportadas por los cuidadores para conductas relacionadas con la alimentación.
Principales resultados:
- Emerge un tema global de "Empoderamiento a través de límites estructurados".
- Se identificaron cuatro temas clave: Fomentar una alimentación equilibrada, Estructurar entornos, Preparar el escenario para el éxito y Manejar desafíos y resistencia.
- Las estrategias incluyen límites explícitos, empoderamiento a través de la elección, guía anticipatoria, desvío y lenguaje positivo.
Conclusiones:
- Este estudio proporciona la primera definición y difusión de estrategias de cuidadores para disminuir las conductas disruptivas relacionadas con la alimentación en el SMS.
- Los límites estructurados implementados por los cuidadores empoderan a las personas con SMS al ofrecer opciones dentro de límites definidos.
- Los hallazgos ofrecen orientación práctica para familias y profesionales de la salud que apoyan a personas con SMS.
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