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

Abstract

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.

Demographic Assessment of Down Syndrome: A Systematic Review

“…A critical group of interest in this frame are the organizations of people with DS and their families, which need to incorporate demographic assessment in their programs to improve the rights, social inclusion, interpersonal relationships, and material well-being [ 34 ].…”

Predictors of individual quality of life in young people with Down syndrome.

“…The results for rights are particularly interesting: It was the third highest-scoring domain, despite existing limitations in the effective implementation of many of the rights set out in the Convention on the Rights of Persons with Disabilities (United Nations, 2006) for people with ID (Gómez, Monsalve, et al, 2020; Morales et al, 2021). These results may be linked to the fact that DS tends to be a well-known disability in our society and therefore, when compared with other disabilities, is more likely to prompt more positive attitudes, more natural supports, and better access to organizations providing assistance and information (Berástegui & Corral, 2020). However, the study by Berástegui and Corral (2020) found that when young people with DS were directly asked about their rights and material well-being, they obtained significantly lower scores than their peers with ID, but without DS, suggesting that using proxy reports rather than asking the young people themselves may have a considerable impact on the results.…”

“…Even so, it should be noted that the views of family members and other close contacts when assessing the QoL of people with ID is not only common (e.g., Shields et al, 2018; Xanthopoulos et al, 2017) but also important (Schalock et al, 2021), particularly when dealing with early childhood. To address this limitation, future research should focus on developing a self-report version that enables young people with DS to give their own views on their QoL (Berástegui & Corral, 2020; Palomba et al, 2020; Sheridan et al, 2020). Third, the results of this study show relationships between different predictor variables and QoL scores, but causal relationships were not established.…”

“…We sought to overcome this limitation by recruiting a large number of participants from different regions across Spain. Second, our study used proxy reports, despite the importance of including the direct perceptions of young people with DS in assessing their own QoL (Balboni et al, 2013; Berástegui & Corral, 2020; Schalock et al, 2021). Even so, it should be noted that the views of family members and other close contacts when assessing the QoL of people with ID is not only common (e.g., Shields et al, 2018; Xanthopoulos et al, 2017) but also important (Schalock et al, 2021), particularly when dealing with early childhood.…”

“…The few studies that exist on the QoL of people with DS focus primarily on the QoL of their parents (e.g., Ivins-Lukse & Pasqualucci-Ronca et al, 2019;Senses Dinc et al, 2019) or on the more limited construct of health-related quality of life (HrQoL; e.g., Katsiana et al, 2020;Rofail et al, 2017;Shields et al, 2018;Xanthopoulos et al, 2017). While the results of these studies vary, most agree that people with DS obtain significantly lower scores than their peers without DS (Berástegui & Corral, 2020;Katsiana et al, 2020;Palomba et al, 2020;Rofail et al, 2017). Some studies on people with DS have focused on finding relationships between HrQoL and individual and environmental variables that may influence them.…”