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Explorando la experiencia del paciente con el síndrome de Behçet: un estudio cualitativo en dos fases utilizando un

Ariadna Rodríguez-Sánchez¹, Claudio-Alberto Rodríguez-Suárez^1,2, Candelaria de la Merced Díaz-González²

¹Nursing, Complejo Hospitalario Universitario Insular Materno Infantil, Las Palmas de Gran Canaria, ESP.

|August 29, 2025

Resumen

Las experiencias de los pacientes con síndrome de Behçet (BS) revelan una investigación cualitativa limitada y destacan brechas críticas en el apoyo psicosocial. Los hallazgos informan mejores estrategias clínicas para las personas que viven con esta rara enfermedad autoinmune.

Área de la Ciencia:

Reumatología
Enfermedades autoinmunes
La vasculitis

Sus antecedentes:

El síndrome de Behçet (BS) es una vasculitis autoinmune sistémica de etiología desconocida.
La BS tiene un impacto significativo en la calidad de vida del paciente, lo que requiere una comprensión integral para los profesionales de la salud.
Los datos cualitativos existentes sobre las experiencias de los pacientes con esclerosis múltiple son limitados, especialmente en lo que se refiere a los aspectos psicosociales.

Objetivo del estudio:

Para sintetizar la evidencia cualitativa existente sobre el síndrome de Behçet.
Para explorar las experiencias vividas de los individuos con BS a través de un enfoque biográfico-narrativo.
Informar sobre el desarrollo de mejores estrategias de atención clínica y psicosocial para pacientes con síndrome de Down.

Principales métodos:

Un estudio en dos fases que combina una revisión sistemática cualitativa de la literatura y una entrevista semiestructurada biográfica-narrativa.
La revisión sistemática buscó en las bases de datos Medline, Web of Science y Scopus sin restricciones de fecha.
Entrevistas semiestructuradas con un paciente con síndrome de Down, analizadas mediante el software ATLAS.ti para la identificación de temas y subtemas.

Principales resultados:

Se identificaron tres temas principales: afrontamiento/adaptación, interacciones del sistema de salud y experiencia vivida de la enfermedad.
Los subtemas incluían el autocuidado, la búsqueda de apoyo, la atención médica, la educación en salud, el bienestar emocional, la incomodidad física y la vulnerabilidad.
La literatura cualitativa sobre el BS es escasa y se centra principalmente en las poblaciones adultas.

Conclusiones:

La investigación cualitativa sobre el síndrome de Behçet es limitada, lo que indica lagunas significativas en el apoyo psicosocial.
El testimonio del paciente subraya los desafíos diarios e identifica áreas cruciales para las intervenciones clínicas y psicosociales.
Recomienda una mayor investigación cualitativa multidisciplinaria para mejorar el diagnóstico, el tratamiento y el apoyo holístico al paciente.

Palabras clave:

Enfermedades autoinmunes Síndrome de Behçet biografías como tema Investigación cualitativa revisar la literatura como tema

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