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Desarrollo de la identidad y adaptación en adolescentes con afecciones genéticas: un estudio de métodos mixtos
Tasha Wainstein1,2, Cyrus Boelman3, Connie Ens4
1Department of Medical Genetics, Faculty of Medicine, The University of British Columbia, Vancouver, BC, Canada. tasha.wainstein@bcchr.ca.
Orphanet journal of rare diseases
|August 21, 2025
Resumen
Los adolescentes con condiciones genéticas experimentan desafíos distintos en el desarrollo de la identidad y la adaptación. El asesoramiento genético puede apoyar su bienestar psicológico y la integración de su diagnóstico genético.
Área de la Ciencia:
- La genética médica
- Psicología de los adolescentes
- La bioética
Sus antecedentes:
- El asesoramiento genético para adolescentes requiere enfoques personalizados distintos del cuidado de los adultos.
- El creciente número de adolescentes discapacitados y las pruebas genómicas tempranas requieren mejores prácticas.
- Investigó las percepciones de los adolescentes de recibir, comprender y vivir con una condición genética.
Objetivo del estudio:
- Explorar cómo los adolescentes de 10 a 19 años perciben y navegan sus diagnósticos genéticos.
- Comprender los factores que influyen en el desarrollo de la identidad y la adaptación psicológica en adolescentes con afecciones genéticas.
- Informar el desarrollo de modelos de atención optimizados para esta población.
Principales métodos:
- Estudio de métodos mixtos transversal y orientado cualitativamente.
- Los adolescentes completaron la escala de adaptación psicológica (PAS) y el cuestionario de identidad de enfermedad (IIQ).
- Se llevaron a cabo entrevistas semiestructuradas y se analizaron mediante análisis iterativo frenético.
Principales resultados:
- Participaron dieciocho adolescentes (edad media de 15,5 años) con diversas afecciones genéticas.
- Los participantes mostraron una adaptación psicológica adecuada (PAS promedio de 3,07) y puntuaciones de identidad de enfermedad ligeramente mejores que las de mala adaptación.
- Se creó un modelo conceptual de la discapacidad y el desarrollo de la identidad genética, destacando los procesos de internalización, la variabilidad contextual y los factores externos como el capacitismo.
Conclusiones:
- Los hallazgos proporcionan una base para desarrollar modelos de atención optimizados para adolescentes con afecciones genéticas.
- Mejorar el acceso al asesoramiento genético es crucial para facilitar el desarrollo de la identidad en este grupo.
- La mejora del asesoramiento genético puede ayudar a los adolescentes a integrar su diagnóstico genético y mejorar la adaptación psicológica.
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