La “ventaja del síndrome de Down” en la calidad de vida de jóvenes con discapacidad intelectual
Resumen
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.
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Abbeduto, L., Seltzer, M., Shattuck, P., Krauss, M., Orsmond, G. y Murphy, M. (2004). Psychological well-being and coping in mothers of youths with autism, Down syndrome, or Fragile X syndrome. American Journal on Mental Retardation, 109(3), 237. https://doi.org/10.1352/0895-8017(2004)109<237:PWACIM>2.0.CO;2
Acharya, K. (2011). Prenatal testing for intellectual disability: misperceptions and reality with lessons from Down syndrome. Developmental Disabilities Research Reviews, 17(1), 27-31. https://doi.org/10.1002/ddrr.135
Berástegui, A., López-Riobóo, E. y García, N. (2015). Proyecto DEMOS. Una apuesta por la formación de las personas con discapacidad intelectual en el entorno universitario. En D. Cabezas y J. Flórez (Dirs.), Educación postsecundaria en entorno universitario para alumnos con discapacidad intelectual: Experiencias y resultados (pp. 31-44). Santander: Fundación Iberoamericana Down21.
Bertoli, M., Biasini, G., Calignano, M., Celani, G., De Grossi, G., Digilio, M. et al. (2011). Needs and challenges of daily life for people with Down syndrome residing in the city of Rome, Italy. Journal of Intellectual Disability Research, 55(8), 801-820. https://doi.org/10.1111/j.1365-2788.2011.01432.x
Blacher, J., Baker, B. L. y Kaladjian, A. (2013). Syndrome specificity and mother-child interactions: examining positive and negative parenting across contexts and time. Journal of Autism and Developmental Disorders, 43(4), 761-774. https://doi.org/10.1007/s10803-012-1605-x
Blacher, J. y McIntyre, L. L. (2006). Syndrome specificity and behavioural disorders in young adults with intellectual disability: cultural differences in family impact. Journal of Intellectual Disability Research, 50(3), 184-198. https://doi.org/10.1111/j.1365-2788.2005.00768.x
Brown, R., MacAdam-Crisp, J., Wang, M. y Iarocci, G. (2006). Family quality of life when there is a child with a developmental disability. Journal of Policy and Practice in Intellectual Disabilities, 3(4), 238-245. https://doi.org/10.1111/j.1741-1130.2006.00085.x
Cohen, J. (1988). Statistical power analysis for the behavioral sciences, 2nd Edition. Hillsdale: Lawrence Erlbaum.
Corrice, A. y Glidden, L. (2009). The Down syndrome advantage: fact or fiction? American Journal on Intellectual and Developmental Disabilities, 114(4), 254-268. https://doi.org/10.1352/1944-7558-114.4.254-268
Dabrowska, A. y Pisula, E. (2010). Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome. Journal of Intellectual Disability Research, 54(3), 266-280. https://doi.org/10.1111/j.1365-2788.2010.01258.x
Dodd, D. H., Zabriskie, R. B., Widmer, M. A. y Eggett, D. (2009). Contributions of family leisure to family functioning among families that include children with developmental disabilities. Journal of Leisure Research, 41(2), 261-286. https://doi.org/10.1080/00222216.2009.11950169
Esbensen, A., Bishop, S., Seltzer, M., Greenberg, J. y Taylor, J. (2010). Comparisons between individuals with Autism Spectrum Disorders and individuals with Down syndrome in adulthood. American Journal on Intellectual and Developmental Disabilities, 115(4), 277-290. https://doi.org/10.1352/1944-7558-115.4.277
Esbensen, A. y Seltzer, M. (2011). Accounting for the "Down syndrome advantage". American Journal on Intellectual and Developmental Disabilities, 116(1), 3-15. https://doi.org/10.1352/1944-7558-116.1.3
Farkas, L., Cless, J. D., Cless, A. W., Nelson Goff, B. S., Bodine, E. y Edelman, A. (2019). The ups and Downs of Down syndrome: a qualitative study of positive and negative parenting experiences. Journal of Family Issues, 40(4), 518-539. https://doi.org/10.1177/0192513X18812192
Fidler, D. J., Hodapp, R. M. y Dykens, E. M. (2000). Stress in families of young children with Down syndrome, Williams syndrome, and Smith-Magenis syndrome. Early Education and Development, 11(4), 395-406. https://doi.org/10.1207/s15566935eed1104_2
Fisman, S., Wolf, L., Ellison, D. y Freeman, T. A. (2000). Longitudinal study of siblings of children with chronic disabilities. The Canadian Journal of Psychiatry, 45(4), 369-375. https://doi.org/10.1177/070674370004500406
Foley, K. R., Taffe, J., Bourke, J., Einfeld, S. L., Tonge, B. J., Trollor, J. y Leonard, H. (2016). Young people with intellectual disability transitioning to adulthood: do behaviour trajectories differ in those with and without Down syndrome? PloS one, 11(7), 1-14. https://doi.org/10.1371/journal.pone.0157667
Glidden, L., Grein, K. y Ludwig, J. (2014). The Down syndrome advantage: it depends on what and when you measure. American Journal on Intellectual and Developmental Disabilities, 119(5), 389-404. https://doi.org/10.1352/1944-7558-119.5.389
Griffith, G. M., Hastings, R. P., Nash, S. y Hill, C. (2010). Using matched groups to explore child behavior problems and maternal well-being in children with Down syndrome and autism. Journal of Autism and Developmental Disorders, 40(5), 610-619. https://doi.org/10.1007/s10803-009-0906-1
Hartley, S. L., Seltzer, M. M., Head, L. y Abbeduto, L. (2012). Psychological well-being in fathers of adolescents and young adults with Down syndrome, Fragile X syndrome, and autism. Family Relations, 61(2), 327-342. https://doi.org/10.1111/j.1741-3729.2011.00693.x
Hodapp, R. (2007). Families of persons with Down syndrome: new perspectives, findings, and research and service needs. Mental Retardation and Developmental Disabilities Research Reviews, 13(3), 279-287. https://doi.org/10.1002/mrdd.20160
Hodapp, R. M., Burke, M. M. y Urbano, R. C. (2012). What's age got to do with it? Implications of maternal age on families of offspring with Down syndrome. International Review of Research in Developmental Disabilities, 42, 109-145. https://doi.org/10.1016/B978-0-12-394284-5.00005-X
Hodapp, R. M., Ricci, L. A., Ly, T. M. y Fidler, D. J. (2003). The effects of the child with Down syndrome on maternal stress. British Journal of Developmental Psychology, 21(1), 137-151. https://doi.org/10.1348/026151003321164672
Huete, A. (2016). Demografía e inclusión social de las personas con síndrome de Down. Revista Síndrome de Down, 33, 38-50.
Kasari, C. y Freeman, S. F. (2001). Task-related social behavior in children with Down syndrome. Journal Information, 106(3), 253-264. https://doi.org/10.1352/0895-8017(2001)106<0253:TRSBIC>2.0.CO;2
Lee, C., Burke, M., Arnold, C. y Owen, A. (2018). Comparing differences in support needs as percieved by parents of adult offspring with Down syndome, Autism Spectrum Disorder an cerebral palsy. Journal of Applied Research in Intellectual Disabilities, 32(1), 194-205. https://doi.org/10.1111/jar.12521
Mitchell, D. B., Hauser-Cram, P. y Crossman, M.K. (2015). Relationship dimensions of the "Down Sydrome Advantage". Journal of Intellectual Disability Research, 59(6), 506-518. https://doi.org/10.1111/jir.12153
Park, J., Hoffman, L., Marquis, J., Turnbull, A. P., Poston, D., Mannan, H., Wang, M. y Nelson, L. L. (2003). Toward assessing family outcomes of service delivery: validation of a Family Quality of Life Survey. Journal of Intellectual Disability Research, 47(4/5), 367-384. https://doi.org/10.1046/j.1365-2788.2003.00497.x
Phillips, B. A., Conners, F. y Curtner-Smith, M. E. (2017). Parenting children with Down syndrome: an analysis of parenting styles, parenting dimensions, and parental stress. Research in Developmental Disabilities, 68, 9-19. https://doi.org/10.1016/j.ridd.2017.06.010
Pisula, E. A. (2007). Comparative study of stress profiles in mothers of children with autism and those of children with Down's syndrome. Journal of Applied Research in Intellectual Disabilities, 20(3), 274-278. https://doi.org/10.1111/j.1468-3148.2006.00342.x
Poehlmann, J., Clements, M., Abbeduto, L. y Farsad, V. (2005). Family experiences associated with a child's diagnosis of fragile X or down syndrome: evidence for disruption and resilience. Mental Retardation, 43(4), 255-267. https://doi.org/10.1352/0047-6765(2005)43[255:FEAWAC]2.0.CO;2
Ricci, L. A. y Hodapp, R. M. (2003). Fathers of children with Down's syndrome versus other types of intellectual disability: perceptions, stress and involvement. Journal of Intellectual Disability Research, 47(4-5), 273-284. https://doi.org/10.1046/j.1365-2788.2003.00489.x
Rodgers, C. (2008). Maternal support for the down's syndrome stereotype: the effect of direct experience of the condition. Journal of Intellectual Disability Research, 31(3), 271-278. https://doi.org/10.1111/j.1365-2788.1987.tb01370.x
Rosner, B. A., Hodapp, R. M., Fidler, D. J., Sagun, J. N. y Dykens, E. M. (2004). Social competence in persons with Prader-Willi, Williams and Down's syndromes. Journal of Applied Research in Intellectual Disabilities, 17(3), 209-217. https://doi.org/10.1111/j.1468-3148.2004.00200.x
Schalock, R. L., Keith, K. D., Verdugo, M. Á. y Gómez, L. E. (2010). Quality of life model development in the field of intellectual disability. En R. Kober, Quality of life for people with intellectual disability (pp. 17-32). Nueva York: Springer. https://doi.org/10.1007/978-90-481-9650-0_2
Schalock, R. L. y Verdugo, M. Á. (2012). A leadership guide to redefining intellectual and developmental disabilities organizations: eight successful change strategies. Baltimore, MD: Brookes Publishing Company.
Shivers, C. M., McGregor, C. y Hough, A. (2019). Self-reported stress among adolescent siblings of individuals with autism spectrum disorder and Down syndrome. Autism, 23(1), 112-122. https://doi.org/10.1177/1362361317722432
Stoneman, Z. (2007). Examining the Down syndrome advantage: mothers and fathers of young children with disabilities. Journal of Intellectual Disability Research, 51(12), 1006-1017. https://doi.org/10.1111/j.1365-2788.2007.01012.x
Tekinarslan, I. A. (2013). Comparison study of depression and quality of life in Turkish mothers of children with Down syndrome, cerebral palsy, and Autism Spectrum Disorder. Psychological Reports, 112(1), 266-287. https://doi.org/10.2466/21.02.15.PR0.112.1.266-287
Tomczak, M. y Tomcak, E. (2014). The need to report effect size estimates revisited. An overview of some recommended measures of effect size. Trends Sport Sciences, 1(21), 19-25.
Urbano, R. y Hodapp, R. (2007). Divorce in families of children with Down syndrome: a population-based study. American Journal on Mental Retardation, 112(4), 261. https://doi.org/10.1352/0895-8017(2007)112[261:DIFOCW]2.0.CO;2
Van Gameren-Oosterom, H., Fekkes, M., Buitendijk, S., Mohangoo, A., Bruil, J. y Van Wouwe, J. (2011). Development, problem behavior, and quality of life in a population based sample of eight-year-old children with down syndrome. PLoS ONE, 6(7), e21879. https://doi.org/10.1371/journal.pone.0021879
Verdugo, M. Á., Gómez, L. E., Arias, B., Santamaría, M., Clavero, D. y Tamarit, J. (2013). Escala INICO-FEAPS: Evaluación Integral de la Calidad de Vida de Personas con Discapacidad Intelectual o del Desarrollo. Salamanca: Publicaciones INICO. https://sid.usal.es.
Verdugo, M. Á., Rodríguez, A. y Sainz, F. (2009). Escala de Calidad de Vida Familiar. Salamanca: Publicaciones INICO. https://sid.usal.es.
Wiley, R. y Renk, K. (2007). Psychological correlates of quality of life in children with cerebral palsy. Journal of Developmental and Physical Disabilities, 19(5), 427-447. https://doi.org/10.1007/s10882-007-9041-0
Acharya, K. (2011). Prenatal testing for intellectual disability: misperceptions and reality with lessons from Down syndrome. Developmental Disabilities Research Reviews, 17(1), 27-31. https://doi.org/10.1002/ddrr.135
Berástegui, A., López-Riobóo, E. y García, N. (2015). Proyecto DEMOS. Una apuesta por la formación de las personas con discapacidad intelectual en el entorno universitario. En D. Cabezas y J. Flórez (Dirs.), Educación postsecundaria en entorno universitario para alumnos con discapacidad intelectual: Experiencias y resultados (pp. 31-44). Santander: Fundación Iberoamericana Down21.
Bertoli, M., Biasini, G., Calignano, M., Celani, G., De Grossi, G., Digilio, M. et al. (2011). Needs and challenges of daily life for people with Down syndrome residing in the city of Rome, Italy. Journal of Intellectual Disability Research, 55(8), 801-820. https://doi.org/10.1111/j.1365-2788.2011.01432.x
Blacher, J., Baker, B. L. y Kaladjian, A. (2013). Syndrome specificity and mother-child interactions: examining positive and negative parenting across contexts and time. Journal of Autism and Developmental Disorders, 43(4), 761-774. https://doi.org/10.1007/s10803-012-1605-x
Blacher, J. y McIntyre, L. L. (2006). Syndrome specificity and behavioural disorders in young adults with intellectual disability: cultural differences in family impact. Journal of Intellectual Disability Research, 50(3), 184-198. https://doi.org/10.1111/j.1365-2788.2005.00768.x
Brown, R., MacAdam-Crisp, J., Wang, M. y Iarocci, G. (2006). Family quality of life when there is a child with a developmental disability. Journal of Policy and Practice in Intellectual Disabilities, 3(4), 238-245. https://doi.org/10.1111/j.1741-1130.2006.00085.x
Cohen, J. (1988). Statistical power analysis for the behavioral sciences, 2nd Edition. Hillsdale: Lawrence Erlbaum.
Corrice, A. y Glidden, L. (2009). The Down syndrome advantage: fact or fiction? American Journal on Intellectual and Developmental Disabilities, 114(4), 254-268. https://doi.org/10.1352/1944-7558-114.4.254-268
Dabrowska, A. y Pisula, E. (2010). Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome. Journal of Intellectual Disability Research, 54(3), 266-280. https://doi.org/10.1111/j.1365-2788.2010.01258.x
Dodd, D. H., Zabriskie, R. B., Widmer, M. A. y Eggett, D. (2009). Contributions of family leisure to family functioning among families that include children with developmental disabilities. Journal of Leisure Research, 41(2), 261-286. https://doi.org/10.1080/00222216.2009.11950169
Esbensen, A., Bishop, S., Seltzer, M., Greenberg, J. y Taylor, J. (2010). Comparisons between individuals with Autism Spectrum Disorders and individuals with Down syndrome in adulthood. American Journal on Intellectual and Developmental Disabilities, 115(4), 277-290. https://doi.org/10.1352/1944-7558-115.4.277
Esbensen, A. y Seltzer, M. (2011). Accounting for the "Down syndrome advantage". American Journal on Intellectual and Developmental Disabilities, 116(1), 3-15. https://doi.org/10.1352/1944-7558-116.1.3
Farkas, L., Cless, J. D., Cless, A. W., Nelson Goff, B. S., Bodine, E. y Edelman, A. (2019). The ups and Downs of Down syndrome: a qualitative study of positive and negative parenting experiences. Journal of Family Issues, 40(4), 518-539. https://doi.org/10.1177/0192513X18812192
Fidler, D. J., Hodapp, R. M. y Dykens, E. M. (2000). Stress in families of young children with Down syndrome, Williams syndrome, and Smith-Magenis syndrome. Early Education and Development, 11(4), 395-406. https://doi.org/10.1207/s15566935eed1104_2
Fisman, S., Wolf, L., Ellison, D. y Freeman, T. A. (2000). Longitudinal study of siblings of children with chronic disabilities. The Canadian Journal of Psychiatry, 45(4), 369-375. https://doi.org/10.1177/070674370004500406
Foley, K. R., Taffe, J., Bourke, J., Einfeld, S. L., Tonge, B. J., Trollor, J. y Leonard, H. (2016). Young people with intellectual disability transitioning to adulthood: do behaviour trajectories differ in those with and without Down syndrome? PloS one, 11(7), 1-14. https://doi.org/10.1371/journal.pone.0157667
Glidden, L., Grein, K. y Ludwig, J. (2014). The Down syndrome advantage: it depends on what and when you measure. American Journal on Intellectual and Developmental Disabilities, 119(5), 389-404. https://doi.org/10.1352/1944-7558-119.5.389
Griffith, G. M., Hastings, R. P., Nash, S. y Hill, C. (2010). Using matched groups to explore child behavior problems and maternal well-being in children with Down syndrome and autism. Journal of Autism and Developmental Disorders, 40(5), 610-619. https://doi.org/10.1007/s10803-009-0906-1
Hartley, S. L., Seltzer, M. M., Head, L. y Abbeduto, L. (2012). Psychological well-being in fathers of adolescents and young adults with Down syndrome, Fragile X syndrome, and autism. Family Relations, 61(2), 327-342. https://doi.org/10.1111/j.1741-3729.2011.00693.x
Hodapp, R. (2007). Families of persons with Down syndrome: new perspectives, findings, and research and service needs. Mental Retardation and Developmental Disabilities Research Reviews, 13(3), 279-287. https://doi.org/10.1002/mrdd.20160
Hodapp, R. M., Burke, M. M. y Urbano, R. C. (2012). What's age got to do with it? Implications of maternal age on families of offspring with Down syndrome. International Review of Research in Developmental Disabilities, 42, 109-145. https://doi.org/10.1016/B978-0-12-394284-5.00005-X
Hodapp, R. M., Ricci, L. A., Ly, T. M. y Fidler, D. J. (2003). The effects of the child with Down syndrome on maternal stress. British Journal of Developmental Psychology, 21(1), 137-151. https://doi.org/10.1348/026151003321164672
Huete, A. (2016). Demografía e inclusión social de las personas con síndrome de Down. Revista Síndrome de Down, 33, 38-50.
Kasari, C. y Freeman, S. F. (2001). Task-related social behavior in children with Down syndrome. Journal Information, 106(3), 253-264. https://doi.org/10.1352/0895-8017(2001)106<0253:TRSBIC>2.0.CO;2
Lee, C., Burke, M., Arnold, C. y Owen, A. (2018). Comparing differences in support needs as percieved by parents of adult offspring with Down syndome, Autism Spectrum Disorder an cerebral palsy. Journal of Applied Research in Intellectual Disabilities, 32(1), 194-205. https://doi.org/10.1111/jar.12521
Mitchell, D. B., Hauser-Cram, P. y Crossman, M.K. (2015). Relationship dimensions of the "Down Sydrome Advantage". Journal of Intellectual Disability Research, 59(6), 506-518. https://doi.org/10.1111/jir.12153
Park, J., Hoffman, L., Marquis, J., Turnbull, A. P., Poston, D., Mannan, H., Wang, M. y Nelson, L. L. (2003). Toward assessing family outcomes of service delivery: validation of a Family Quality of Life Survey. Journal of Intellectual Disability Research, 47(4/5), 367-384. https://doi.org/10.1046/j.1365-2788.2003.00497.x
Phillips, B. A., Conners, F. y Curtner-Smith, M. E. (2017). Parenting children with Down syndrome: an analysis of parenting styles, parenting dimensions, and parental stress. Research in Developmental Disabilities, 68, 9-19. https://doi.org/10.1016/j.ridd.2017.06.010
Pisula, E. A. (2007). Comparative study of stress profiles in mothers of children with autism and those of children with Down's syndrome. Journal of Applied Research in Intellectual Disabilities, 20(3), 274-278. https://doi.org/10.1111/j.1468-3148.2006.00342.x
Poehlmann, J., Clements, M., Abbeduto, L. y Farsad, V. (2005). Family experiences associated with a child's diagnosis of fragile X or down syndrome: evidence for disruption and resilience. Mental Retardation, 43(4), 255-267. https://doi.org/10.1352/0047-6765(2005)43[255:FEAWAC]2.0.CO;2
Ricci, L. A. y Hodapp, R. M. (2003). Fathers of children with Down's syndrome versus other types of intellectual disability: perceptions, stress and involvement. Journal of Intellectual Disability Research, 47(4-5), 273-284. https://doi.org/10.1046/j.1365-2788.2003.00489.x
Rodgers, C. (2008). Maternal support for the down's syndrome stereotype: the effect of direct experience of the condition. Journal of Intellectual Disability Research, 31(3), 271-278. https://doi.org/10.1111/j.1365-2788.1987.tb01370.x
Rosner, B. A., Hodapp, R. M., Fidler, D. J., Sagun, J. N. y Dykens, E. M. (2004). Social competence in persons with Prader-Willi, Williams and Down's syndromes. Journal of Applied Research in Intellectual Disabilities, 17(3), 209-217. https://doi.org/10.1111/j.1468-3148.2004.00200.x
Schalock, R. L., Keith, K. D., Verdugo, M. Á. y Gómez, L. E. (2010). Quality of life model development in the field of intellectual disability. En R. Kober, Quality of life for people with intellectual disability (pp. 17-32). Nueva York: Springer. https://doi.org/10.1007/978-90-481-9650-0_2
Schalock, R. L. y Verdugo, M. Á. (2012). A leadership guide to redefining intellectual and developmental disabilities organizations: eight successful change strategies. Baltimore, MD: Brookes Publishing Company.
Shivers, C. M., McGregor, C. y Hough, A. (2019). Self-reported stress among adolescent siblings of individuals with autism spectrum disorder and Down syndrome. Autism, 23(1), 112-122. https://doi.org/10.1177/1362361317722432
Stoneman, Z. (2007). Examining the Down syndrome advantage: mothers and fathers of young children with disabilities. Journal of Intellectual Disability Research, 51(12), 1006-1017. https://doi.org/10.1111/j.1365-2788.2007.01012.x
Tekinarslan, I. A. (2013). Comparison study of depression and quality of life in Turkish mothers of children with Down syndrome, cerebral palsy, and Autism Spectrum Disorder. Psychological Reports, 112(1), 266-287. https://doi.org/10.2466/21.02.15.PR0.112.1.266-287
Tomczak, M. y Tomcak, E. (2014). The need to report effect size estimates revisited. An overview of some recommended measures of effect size. Trends Sport Sciences, 1(21), 19-25.
Urbano, R. y Hodapp, R. (2007). Divorce in families of children with Down syndrome: a population-based study. American Journal on Mental Retardation, 112(4), 261. https://doi.org/10.1352/0895-8017(2007)112[261:DIFOCW]2.0.CO;2
Van Gameren-Oosterom, H., Fekkes, M., Buitendijk, S., Mohangoo, A., Bruil, J. y Van Wouwe, J. (2011). Development, problem behavior, and quality of life in a population based sample of eight-year-old children with down syndrome. PLoS ONE, 6(7), e21879. https://doi.org/10.1371/journal.pone.0021879
Verdugo, M. Á., Gómez, L. E., Arias, B., Santamaría, M., Clavero, D. y Tamarit, J. (2013). Escala INICO-FEAPS: Evaluación Integral de la Calidad de Vida de Personas con Discapacidad Intelectual o del Desarrollo. Salamanca: Publicaciones INICO. https://sid.usal.es.
Verdugo, M. Á., Rodríguez, A. y Sainz, F. (2009). Escala de Calidad de Vida Familiar. Salamanca: Publicaciones INICO. https://sid.usal.es.
Wiley, R. y Renk, K. (2007). Psychological correlates of quality of life in children with cerebral palsy. Journal of Developmental and Physical Disabilities, 19(5), 427-447. https://doi.org/10.1007/s10882-007-9041-0
Berástegui, A., & Corral, S. (2020). La “ventaja del síndrome de Down” en la calidad de vida de jóvenes con discapacidad intelectual. Siglo Cero, 51(4), 39–51. https://doi.org/10.14201/scero20205143951
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