La “ventaja del síndrome de Down” en la calidad de vida de jóvenes con discapacidad intelectual

• Berástegui, Ana ^[1] ; Corral, Sara ^[1]
  1. [1] Universidad Pontificia Comillas

     Universidad Pontificia Comillas

     Madrid, España

     
• Localización: Siglo Cero: Revista Española sobre Discapacidad Intelectual, ISSN 2530-0350, Vol. 51, Nº 4, 2020, págs. 39-51
• Idioma: español
• DOI: 10.14201/scero20205143951
• Títulos paralelos:
  • The “Down Syndrome Advantage” in the Young People with Intellectual Disabilities Quality of Life
• Enlaces
  • Texto completo
• Dialnet Métricas: 3 Citas
• Resumen
  • español

    El objetivo del estudio fue examinar el fenómeno descrito en la literatura como la “ventaja del síndrome de Down” en la calidad de vida familiar e individual de jóvenes con discapacidad intelectual (DI). La muestra la formaron 84 jóvenes con DI (Edad media 21,41 años; DT = 2,87), de los que 20 tenían síndrome de Down (SD) (23,81 %). Los instrumentos utilizados fueron la Escala de Calidad de Vida Familiar (CVF) y la Escala INICO-FEAPS, en su versión informada por otros (CVI-H) y autoinforme (CVI-A). Los resultados reflejan mayores puntuaciones en CVF y CVI-H en las familias de los jóvenes con SD y menores en CVI-A que en los jóvenes sin SD. Ni la edad de los padres ni el nivel de ingresos se relacionaron con estas variables. Que las diferencias en calidad de vida familiar e individual se den cuando informan los progenitores, pero se inviertan en la versión autoinformada, sugiere una explicación del fenómeno no causal sino relacionada con las expectativas familiares y su acceso a recursos y apoyos, y nos impulsa a dar importancia a la visión de la persona en la evaluación de la calidad de vida de los jóvenes con DI.

  • English

    The aim of the study was to examine the “Down syndrome advantage” phenomenon in the family and individual quality of life of young people with intellectual disabilities (ID). The sample consisted of 84 young people with ID (mean age 21,41 years; SD = 2,87), 20 of them with Down syndrome (DS) (23,81 %). The instruments were the Family Quality of Life Scale (FQoL) and the INICO-FEAPS Scale, in its reported by others version (QoL-H) and self-reported version (QoL-A). The results reflect greater satisfaction with FQoL and better QoL-H scores in the young people with DS’ families, while QoL-A is higher among young people without DS. Neither the age of the parents nor the level of income was related to these variables. The fact that the differences found in family and individual QoL are favorable for young people with DS when their relatives are the informants, but unfavorable in the self-reported version, suggests an not causal explanation of the phenomenon, but related to family expectations and their access to resources and supports. This encourages us to highlight the importance of people’s self-perception and report in the evaluation of the QoL of young people with ID.

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