An Integrated Analysis between Quality of Life and Support Needs in Adults with Intellectual Disabilities in Chile
Abstract The support paradigm and the quality of life paradigm have become fundamental guides for progress in the field of Intellectual Disability (ID). Based on a sample of 93 adults with ID, the relationship between Quality of Life and Support Needs is analyzed from a non-experimental quantitative approach, applying the INICO-FEAPS scale and the SIS Support Intensity scale for each construct. The main results show that there is a strong and indirect relationship between quality of life and support needs, and the relevance of analyzing these results from variables such as the degree of disability, sex or socioeconomic level. The discussion allows us to infer the need to discuss new strategies around categories such as the degree of disability, self-determination and social inclusion, as facilitating elements of quality of life and supporting a comprehensive approach that contributes to the development of social program strategies for the population with ID.
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Álvarez, O., Vicente, E. y Mumbardó, C. (2022). Mejora de la autodeterminación y calidad de vida en adultos con necesidades generalizadas de apoyo. Siglo Cero, 53(4), 109-129. https://doi.org/10.14201/scero2022534109129
Álvarez-Aguado, I., Vega, V., Farhang, M., González, F., Espinosa, F., Spencer, H. y Álvarez, L. (2022). Quality of life in adults with intellectual disabilities and mental health problems. British Journal of Learning Disabilities, 51(1), 53-61. https://doi.org/10.1111/bld.12490
Álvarez-Aguado, I., Vega, V., Spencer, H., González, F., Jarpa, M. y Exss, K. (2021). Levels of self-determination in the ageing population with intellectual disabilities. British Journal of Learning Disabilities, 50(4), 494-503. https://doi.org/10.1111/bld.12419
Berástegui, A., Santos, A. y Suárez, G. (2021). The reporters’ agreement in assessing the quality of life of young people with intellectual disabilities. Research in Developmental Disabilities, 116, 104026. https://doi.org/10.1016/j.ridd.2021.104026
Buntinx, W. y Schalock, R. (2010). Models of disability, quality of life, and individualized supports: Implications for professional practice in intellectual disability. Journal of Policy and Practice in Intellectual Disabilities, 7, 283-294. https://doi.org/10.1111/j.1741-1130.2010.00278.x
Castro, L., Cerda, G., Vallejos, V., Zúñiga, D. y Cano, R. (2016). Calidad de vida de personas con discapacidad intelectual en centros de formación laboral. Avances en Psicología Latinoamericana, 34(1), 175-186. https://doi.org/10.12804/apl34.1.2016.12
Castro, L., Vallejos, V., Casas, J., Cerda, G., Sánchez, S. y Zúñiga, D. (2017). Adaptación de la Escala Integral de Calidad de Vida en personas con discapacidad intelectual y del desarrollo en población chilena. Terapia Psicológica, 35(3), 231-238. https://doi.org/10.4067/S0718-48082017000300231
Córdoba-Andrade, L., Salamanca, L. y Mora, A. (2019). Calidad de vida en personas con discapacidad intelectual y múltiple de 4 a 21 años de edad. Psychologia, 13(2), 79-93. https://doi.org/10.21500/19002386.4014
Gómez, L. E., Morán, M., Al-Halabí, S., Swerts, C., Verdugo, M. Á. y Schalock, R. L. (2022). Quality of life and the international convention on the rights of persons with disabilities: consensus indicators for assessment. Psicothema, 34(2), 182-191. https://doi.org/10.7334/psicothema2021.574
Gómez, L. E., Schalock, R. L. y Verdugo, M. Á. (2021a). A quality of life supports model: six research-focused steps to evaluate the model and enhance research practices in the field of IDD. Research in Developmental Disabilities, 119, 104112. https://doi.org/10.1016/j.ridd.2021.104112
Gómez, L. E., Schalock, R. L. y Verdugo, M. Á. (2021b). A new paradigm in the field of intellectual and developmental disabilities: characteristics and evaluation. Psicothema, 33(1), 28-35. https://doi.org/10.7334/psicothema2020.385
Gómez, L. E., Verdugo, M. Á., arias, B., Navas, P. y Schalock, R. L. (2013). The development and use of Provider Profiles at the organizational and systems level. Evaluation and Program Planning, 40, 15-26. https://doi.org/10.1016/j.evalprogplan.2013.05.001
González, J. (2019). Intensidad de apoyos, salud mental, empleo y su relación con resultados de calidad de vida. Siglo Cero, 50(2), 73-88. https://doi.org/10.14201/scero20195027388
Harries, J., Guscia, R., Kirby, N., Nettelbeck, T. y Taplin, J. (2005). Support needs and adaptive behaviors. American Journal on Mental Retardation, 110, 393-404. https://doi.org/10.1352/0895-8017(2005)110[393:snaab]2.0.co;2
Henao-Lema, C. P., Verdugo-Alonso, M. Á. y Córdoba-Andrade, L. (2015). Adaptación para Colombia de la Escala INICO-FEAPS de evaluación de calidad de vida de personas con discapacidad intelectual. Revista de la Facultad de Medicina, 63(4), 677-686. https://doi.org/10.15446/revfacmed.v63.n4.50799
McCarron, M., Lombard-Vance, R., Murphy, E., May, P., Webb, N., Sheaf, G., McCallion, P., Stancliffe, R., Normand, C., Smith, V. y O’Donovan, M. (2019). Effect of deinstitutionalization on quality of life for adults with intellectual disabilities: A systematic review. BMJ Open, 9(4), e025735. https://doi.org/10.1136/bmjopen-2018-025735
McDougall, J., Evans, J. y Baldwin, P. (2010). The importance of self-determination to perceived quality of life for youth and young adults with chronic conditions and disabilities. Remedial and Special Education, 31(4), 252-260. https://doi.org/10.1177/0741932509355989
Organización de Naciones Unidas (2006). Convención sobre los derechos de las personas con discapacidad.
Pascual, D., Garrido, M. y Antequera, R. (2014). Autodeterminación y calidad de vida: un programa para la mejora de personas adultas con discapacidad intelectual. Psicología Educativa, 20(1), 33-38. https://doi.org/10.1016/j.pse.2014.05.004
Schalock, R. L., Luckasson, R. y Tassé, M. (2021). Twenty questions and answers regarding the 12th edition of the AAIDD manual: Intellectual disability: definition, diagnosis, classification, and systems of supports. American Association on Intellectual and Developmental Disabilities.
Schalock, R. L. y Verdugo, M. Á. (2002/2003). Quality of life for human service practitioners. American Association on Intellectual and Developmental Disabilities.
Simões, C., Santos, S., Biscaia, R. y Thompson, J. (2016). Understanding the Relationship between Quality of Life, Adaptive Behavior and Support Needs. Journal of Developmental and Physical Disabilities, 28(6), 849-870. https://doi.org/10.1007/s10882-016-9514-0
Simões, C., Santos, S. y Claes, C. (2015). The Portuguese version of Personal Outcomes Scale: a psychometric validity and reliability study. Intellectual and Developmental Disabilities, 53, 129-142. https://doi.org/10.1352/1934-9556-53.2.129
Thompson, J., Bradley, V., Buntinx, W., Schalock, R. L., Shogren, K., Snell, M., Wehmeyer, M., Borthwick-duffy, S., Coulter, D., Craig, E., Gómez, S., Lachapelle, Y., Luckasson, R., Reeve, A., Spreat, S., Tassé, M., Verdugo, M. Á. y Yeager, M. (2009). Conceptualizing supports and the support needs of people with intellectual disability. Intellectual and Developmental Disabilities, 47(2), 135-146. https://doi.org/10.1352/1934-9556-47.2.135
Thompson, J., Bryant, B., Cambell, E., Craig, E. P., Hughes, C., Rothelz, D. y Wehmeyer, M. (2004). Supports Intensity Scale. American Association on Intellectual and Developmental Disabilities.
Vega, V., Jenaro, C., Flores, N., Cruz, M. y Lerdo de Tejada, A. (2012). Necesidades de apoyos en adultos con discapacidad intelectual institucionalizados: estudio en el contexto chileno. Diversitas, 8(2), 213-222.
Verdugo, M. Á. (2012). Escala INICO-FEAPS: Evaluación Integral de la Calidad de Vida de personas con Discapacidad Intelectual o del Desarrollo. Revista Española de Discapacidad, 2(1), 247.
Verdugo, M. Á., Arias, B. e Ibáñez, A. (2007). Escala de Intensidad de Apoyos SIS. TEA.
Verdugo, M. Á., Arias Martínez, B., Gómez Sánchez L. E. y Schalock R. L. (2009). Escala de Calidad de Vida-GENCAT. Instituto Universitario de Integración en la Comunidad (Salamanca, España).
Verdugo, M. Á., Gómez, L., 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. INICO.
Verdugo, M. Á., Gómez, L., Arias, B., Santamaría, M., Navallas, E., Fernández, S. y Hierro I. (2014). Escala San Martín. Evaluación de la calidad de vida de personas con discapacidades significativas. Santander, Fundación Obra San Martín.
Verdugo, M. Á., Gómez SSánchez, L. E., y Arias Martínez, B. (2009). Evaluación de la calidad de vida en personas mayores: La Escala FUMAT. Instituto Universitario de Integración en la Comunidad (Salamanca, España).
Verdugo, M. Á., Schalock, R. L. y Gómez, L. E. (2021). El modelo de calidad de vida y apoyos: la unión tras veinticinco años de caminos paralelos. Siglo Cero, 52(3), 9-28. https://doi.org/10.14201/scero2021523928
Vicente, E., Verdugo, M. Á., Gómez-Vela, M., Fernández-Pulido, R., Wehmeyer, M. y Guillén, V. (2019). Personal characteristics and school contextual variables associated with student self-determination in Spanish context. Journal of Intellectual y Developmental Disability, 44(1), 23-34. https://doi.org/10.3109/13668250.2017.1310828
Wehmeyer, M. (2020). The importance of self-determination to the quality of life of people with intellectual disability: a perspective. International Journal of Environmental Research and Public Health, 17(19), 7121. https://doi.org/10.3390/ijerph17197121
Álvarez-Aguado, I., Vega, V., Farhang, M., González, F., Espinosa, F., Spencer, H. y Álvarez, L. (2022). Quality of life in adults with intellectual disabilities and mental health problems. British Journal of Learning Disabilities, 51(1), 53-61. https://doi.org/10.1111/bld.12490
Álvarez-Aguado, I., Vega, V., Spencer, H., González, F., Jarpa, M. y Exss, K. (2021). Levels of self-determination in the ageing population with intellectual disabilities. British Journal of Learning Disabilities, 50(4), 494-503. https://doi.org/10.1111/bld.12419
Berástegui, A., Santos, A. y Suárez, G. (2021). The reporters’ agreement in assessing the quality of life of young people with intellectual disabilities. Research in Developmental Disabilities, 116, 104026. https://doi.org/10.1016/j.ridd.2021.104026
Buntinx, W. y Schalock, R. (2010). Models of disability, quality of life, and individualized supports: Implications for professional practice in intellectual disability. Journal of Policy and Practice in Intellectual Disabilities, 7, 283-294. https://doi.org/10.1111/j.1741-1130.2010.00278.x
Castro, L., Cerda, G., Vallejos, V., Zúñiga, D. y Cano, R. (2016). Calidad de vida de personas con discapacidad intelectual en centros de formación laboral. Avances en Psicología Latinoamericana, 34(1), 175-186. https://doi.org/10.12804/apl34.1.2016.12
Castro, L., Vallejos, V., Casas, J., Cerda, G., Sánchez, S. y Zúñiga, D. (2017). Adaptación de la Escala Integral de Calidad de Vida en personas con discapacidad intelectual y del desarrollo en población chilena. Terapia Psicológica, 35(3), 231-238. https://doi.org/10.4067/S0718-48082017000300231
Córdoba-Andrade, L., Salamanca, L. y Mora, A. (2019). Calidad de vida en personas con discapacidad intelectual y múltiple de 4 a 21 años de edad. Psychologia, 13(2), 79-93. https://doi.org/10.21500/19002386.4014
Gómez, L. E., Morán, M., Al-Halabí, S., Swerts, C., Verdugo, M. Á. y Schalock, R. L. (2022). Quality of life and the international convention on the rights of persons with disabilities: consensus indicators for assessment. Psicothema, 34(2), 182-191. https://doi.org/10.7334/psicothema2021.574
Gómez, L. E., Schalock, R. L. y Verdugo, M. Á. (2021a). A quality of life supports model: six research-focused steps to evaluate the model and enhance research practices in the field of IDD. Research in Developmental Disabilities, 119, 104112. https://doi.org/10.1016/j.ridd.2021.104112
Gómez, L. E., Schalock, R. L. y Verdugo, M. Á. (2021b). A new paradigm in the field of intellectual and developmental disabilities: characteristics and evaluation. Psicothema, 33(1), 28-35. https://doi.org/10.7334/psicothema2020.385
Gómez, L. E., Verdugo, M. Á., arias, B., Navas, P. y Schalock, R. L. (2013). The development and use of Provider Profiles at the organizational and systems level. Evaluation and Program Planning, 40, 15-26. https://doi.org/10.1016/j.evalprogplan.2013.05.001
González, J. (2019). Intensidad de apoyos, salud mental, empleo y su relación con resultados de calidad de vida. Siglo Cero, 50(2), 73-88. https://doi.org/10.14201/scero20195027388
Harries, J., Guscia, R., Kirby, N., Nettelbeck, T. y Taplin, J. (2005). Support needs and adaptive behaviors. American Journal on Mental Retardation, 110, 393-404. https://doi.org/10.1352/0895-8017(2005)110[393:snaab]2.0.co;2
Henao-Lema, C. P., Verdugo-Alonso, M. Á. y Córdoba-Andrade, L. (2015). Adaptación para Colombia de la Escala INICO-FEAPS de evaluación de calidad de vida de personas con discapacidad intelectual. Revista de la Facultad de Medicina, 63(4), 677-686. https://doi.org/10.15446/revfacmed.v63.n4.50799
McCarron, M., Lombard-Vance, R., Murphy, E., May, P., Webb, N., Sheaf, G., McCallion, P., Stancliffe, R., Normand, C., Smith, V. y O’Donovan, M. (2019). Effect of deinstitutionalization on quality of life for adults with intellectual disabilities: A systematic review. BMJ Open, 9(4), e025735. https://doi.org/10.1136/bmjopen-2018-025735
McDougall, J., Evans, J. y Baldwin, P. (2010). The importance of self-determination to perceived quality of life for youth and young adults with chronic conditions and disabilities. Remedial and Special Education, 31(4), 252-260. https://doi.org/10.1177/0741932509355989
Organización de Naciones Unidas (2006). Convención sobre los derechos de las personas con discapacidad.
Pascual, D., Garrido, M. y Antequera, R. (2014). Autodeterminación y calidad de vida: un programa para la mejora de personas adultas con discapacidad intelectual. Psicología Educativa, 20(1), 33-38. https://doi.org/10.1016/j.pse.2014.05.004
Schalock, R. L., Luckasson, R. y Tassé, M. (2021). Twenty questions and answers regarding the 12th edition of the AAIDD manual: Intellectual disability: definition, diagnosis, classification, and systems of supports. American Association on Intellectual and Developmental Disabilities.
Schalock, R. L. y Verdugo, M. Á. (2002/2003). Quality of life for human service practitioners. American Association on Intellectual and Developmental Disabilities.
Simões, C., Santos, S., Biscaia, R. y Thompson, J. (2016). Understanding the Relationship between Quality of Life, Adaptive Behavior and Support Needs. Journal of Developmental and Physical Disabilities, 28(6), 849-870. https://doi.org/10.1007/s10882-016-9514-0
Simões, C., Santos, S. y Claes, C. (2015). The Portuguese version of Personal Outcomes Scale: a psychometric validity and reliability study. Intellectual and Developmental Disabilities, 53, 129-142. https://doi.org/10.1352/1934-9556-53.2.129
Thompson, J., Bradley, V., Buntinx, W., Schalock, R. L., Shogren, K., Snell, M., Wehmeyer, M., Borthwick-duffy, S., Coulter, D., Craig, E., Gómez, S., Lachapelle, Y., Luckasson, R., Reeve, A., Spreat, S., Tassé, M., Verdugo, M. Á. y Yeager, M. (2009). Conceptualizing supports and the support needs of people with intellectual disability. Intellectual and Developmental Disabilities, 47(2), 135-146. https://doi.org/10.1352/1934-9556-47.2.135
Thompson, J., Bryant, B., Cambell, E., Craig, E. P., Hughes, C., Rothelz, D. y Wehmeyer, M. (2004). Supports Intensity Scale. American Association on Intellectual and Developmental Disabilities.
Vega, V., Jenaro, C., Flores, N., Cruz, M. y Lerdo de Tejada, A. (2012). Necesidades de apoyos en adultos con discapacidad intelectual institucionalizados: estudio en el contexto chileno. Diversitas, 8(2), 213-222.
Verdugo, M. Á. (2012). Escala INICO-FEAPS: Evaluación Integral de la Calidad de Vida de personas con Discapacidad Intelectual o del Desarrollo. Revista Española de Discapacidad, 2(1), 247.
Verdugo, M. Á., Arias, B. e Ibáñez, A. (2007). Escala de Intensidad de Apoyos SIS. TEA.
Verdugo, M. Á., Arias Martínez, B., Gómez Sánchez L. E. y Schalock R. L. (2009). Escala de Calidad de Vida-GENCAT. Instituto Universitario de Integración en la Comunidad (Salamanca, España).
Verdugo, M. Á., Gómez, L., 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. INICO.
Verdugo, M. Á., Gómez, L., Arias, B., Santamaría, M., Navallas, E., Fernández, S. y Hierro I. (2014). Escala San Martín. Evaluación de la calidad de vida de personas con discapacidades significativas. Santander, Fundación Obra San Martín.
Verdugo, M. Á., Gómez SSánchez, L. E., y Arias Martínez, B. (2009). Evaluación de la calidad de vida en personas mayores: La Escala FUMAT. Instituto Universitario de Integración en la Comunidad (Salamanca, España).
Verdugo, M. Á., Schalock, R. L. y Gómez, L. E. (2021). El modelo de calidad de vida y apoyos: la unión tras veinticinco años de caminos paralelos. Siglo Cero, 52(3), 9-28. https://doi.org/10.14201/scero2021523928
Vicente, E., Verdugo, M. Á., Gómez-Vela, M., Fernández-Pulido, R., Wehmeyer, M. y Guillén, V. (2019). Personal characteristics and school contextual variables associated with student self-determination in Spanish context. Journal of Intellectual y Developmental Disability, 44(1), 23-34. https://doi.org/10.3109/13668250.2017.1310828
Wehmeyer, M. (2020). The importance of self-determination to the quality of life of people with intellectual disability: a perspective. International Journal of Environmental Research and Public Health, 17(19), 7121. https://doi.org/10.3390/ijerph17197121
Vega Córdova, V., González-Carrasco, F., Álvarez-Aguado, I., Espinosa Parra, F., González-Yáñez, M., Spencer González, H., & Jarpa Azagra, M. (2023). An Integrated Analysis between Quality of Life and Support Needs in Adults with Intellectual Disabilities in Chile. Siglo Cero, 54(4), 49–64. https://doi.org/10.14201/scero.31364
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