Quality of Life and the International Convention on the Rights of Persons With DisabilitiesConsensus Indicators for Assessment

  1. Laura E. Gómez 1
  2. M. Lucía Morán 1
  3. Susana Al-Halabí 1
  4. Chris Swerts 2
  5. Miguel Ángel Verdugo 3
  6. Robert L. Schalock 4
  1. 1 Universidad de Oviedo
    info

    Universidad de Oviedo

    Oviedo, España

    ROR https://ror.org/006gksa02

  2. 2 HOGENT (Belgium)
  3. 3 INICO. Universidad de Salamanca
  4. 4 Hastings College, University of Nebraska (United States)
Mostrar afiliaciones +
Revista:
Psicothema

ISSN: 0214-9915,  1886-144X

Año de publicación: 2022

Volumen: 34

Número: 2

Páginas: 182-191

Tipo: Artículo

DOI: 10.7334/PSICOTHEMA2021.574 DIALNET GOOGLE SCHOLAR lock_openAcceso abierto editor

Otras publicaciones en: Psicothema

Resumen

Antecedentes: el constructo de calidad de vida proporciona un marco conceptual ideal para traducir conceptos abstractos como autodeterminación, equidad, accesibilidad o inclusión. Mediante una consulta a expertos se pretende desarrollar y validar un banco de indicadores e ítems basados en el marco conceptual de la calidad de vida que pueda ser utilizado para evaluar e implementar los derechos recogidos en la Convención sobre los Derechos de las Personas con Discapacidad (CDPD). Método: participaron 32 expertos en el campo de las discapacidades intelectuales y del desarrollo calificando la idoneidad, importancia y claridad de un banco de 296 ítems, así como la relevancia de controlar 70 variables sociodemográficas. Resultados: tras el análisis cualitativo y cuantitativo de los datos, se llegó a una solución consensuada de 60 variables sociodemográficas y 153 ítems que puntuaron alto en todos los criterios y obtuvieron un excelente grado de acuerdo entre los expertos. Conclusiones: este banco de ítems y conjunto de variables sociodemográficas constituye la versión piloto de un instrumento de evaluación y seguimiento de la CDPD con suficientes evidencias de validez basadas en el contenido, que puede ser útil para desarrollar prácticas basadas en la evidencia y para detectar violaciones de derechos.

Referencias bibliográficas

  • Aznar, A., González, D., & Olate, G. (2012). The ITINERIS scale on the rights of persons with intellectual disabilities: Development, pilot studies and application at a country level in South America. Journal of Intellectual Disability Research, 56, 1046-1057. https://doi.org/10.1111/j.1365-2788.2012.01651.x
  • Balboni, G., Coscarelli, A., Giunti, G., & Schalock, R. L. (2013). The assessment of the quality of life of adults with intellectual disability: The use of self-report and report of others assessment strategies. Research in Developmental Disabilities, 34(11), 4248-4254. https://doi.org/10.1016/j.ridd.2013.09.009
  • CERMI (2018). Derechos humanos y discapacidad. Informe España 2018 [Human rights and disability. 2018 Spanish report]. https://www.cermi.es/sites/default/files/docs/colecciones/Informe%202018_ONU.pdf
  • Claes, C., Vandenbussche, H., & Lombardi, M. (2016). Human rights and quality-of-life domains: Identifying cross-cultural indicators. In R. L. Schalock & K. Keith (Eds.), Cross-cultural quality of life: Enhancing the lives of people with intellectual disability (pp. 167-174). AAIDD.
  • Colver, A. F., Dickinson, H. O., Parkinson, K., Arnaud, C., Beckung, E., Fauconnier, J., Marcelli, M., McManus, V., Michelsen, S.I., Parkes, J., & Thyen, U. (2011). Access of children with cerebral palsy to the physical, social and attitudinal environment they need: A cross-sectional European study. Disability & Rehabilitation, 33, 28-35. https://doi.org/10.3109/09638288.2010.485669
  • De Maeyer, J., Vandenbussche, H., Claes, C., & Reynaert, D. (2017). Human rights, the capability approach and quality of life: An integrated paradigm of support in the quest for social justice. Therapeutic Communities: The International Journal of Therapeutic Communities, 38, 156-162. https://doi.org/10.1108/TC-03-2017-0011
  • Faragher, R., & Van Ommen, M. (2017). Conceptualising educational quality of life to understand the school experiences of students with intellectual disability. Journal of Policy and Practice in Intellectual Disabilities, 14(1), 39-50. https://doi.org/10.3109/09638288.2010.485669
  • Fernández, M., Verdugo, M. A., Gómez, L. E., Aguayo, V., & Arias, B. (2018). Core indicators to assess quality of life in population with brain injury. Social Indicators Research, 137, 813-828. https://doi.org/10.1007/s11205-017-1612-6
  • Fleiss, J. L. (1981). Statistical methods for rates and proportions. John Wiley and Sons.
  • Gómez, L. E., Alcedo, M. A., Arias, B., Fontanil, Y., Arias, V. B., Monsalve, M. A., & Verdugo, M. A. (2016). A new scale for the measurement of quality of life in children with intellectual disability. Research in Developmental Disabilities, 53-54, 399-410. https://doi.org/10.1016/j.ridd.2016.03.005
  • Gómez, L. E., Arias, B., Verdugo, M. A., Tassé, M. J., & Brown, I. (2015). Operationalisation of quality of life for adults with severe disabilities. Journal of Intellectual Disability Research, 59(19), 924-941. https://doi.org/10.1111/jir.12204
  • Gómez, L. E., Monsalve, L., Morán, L., Alcedo, M. A., Lombardi, M., & Schalock, R. L. (2020). Measurable indicators of CRPD for people with intellectual and developmental disabilities within the framework of quality of life. International Journal of Environmental Research and Public Health, 17, Article 5123. https://doi.org/10.3390/ijerph17145123
  • Gómez. L. E., Schalock, R. L., & Verdugo, M. A. (2021a). 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., Schalock, R. L., & Verdugo, M. A. (2021b). 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., Verdugo, M. A., Arias, B., & Irurtia, M. J. (2011). Evaluación de los derechos de las personas con discapacidad intelectual: estudio preliminar [Evaluation of the rights of people with intellectual disabilities: Preliminary study]. Behavioral Psychology-Psicología Conductual, 19(1), 207-222.
  • Gómez, L. E., Verdugo, M. A., Rodríguez, M., Morán, L., Arias, V. B., & Monsalve, A. (2020). Adapting a measure of quality of life to children with Down syndrome for the development of evidencebased interventions. Psychosocial Intervention, 29, 39-48. https://doi.org/10.5093/pi2019a17
  • Houseworth, J., Stancliffe, R. J., & Tichá, R. (2019). Examining the National Core Indicators’ Potential to monitor rights of people with intellectual and developmental disabilities according to the CRPD. Journal of Policy and Practice in Intellectual Disabilities, 16(4), 342- 351. https://doi.org/10.1111/jppi.12315
  • Instituto Asturiano de la Mujer (2018). Guía sobre violencia de género [Guide o gender violence]. https://www.plenainclusionasturias.org/wpcontent/uploads/2018/12/PUBLICA-VG-2019-LECTURA-FACIL-1.pdf
  • Karr, V. (2011). A life of quality: Informing the UN convention on the rights of persons with disabilities. Journal of Disability Policy Studies, 22, 66-82. https://doi.org/10.1177/1044207310392785
  • Lawshe, C. H. (1975). A quantitative approach to content validity. Personnel Psychology, 28, 563-575.
  • Lombardi, M., Vandenbussche, H., Claes, C., Schalock, R. L., De Maeyer, J., & Vandevelde, S. (2019). The concept of quality of life as framework for implementing the UNCRPD. Journal of Policy and Practice in Intellectual Disabilities, 16, 180-190. https://doi.org/10.1111/jppi.12279
  • Mittler, P. (2015). The UN Convention on the rights of persons with disabilities: Implementing a paradigm shift. Journal of Policy and Practice in Intellectual Disabilities, 12, 79-89. https://doi.org/10.1111/jppi.12118
  • Morales, L., Morán, L., & Gómez, L. E. (2021). Evaluación de resultados personales relacionados con derechos en jóvenes con discapacidad intelectual y TEA [Assessment of rights-related personal outcomes in young people with autism spectrum disorder and intellectual disability]. Siglo Cero, 52(3), 81-99. https://doi.org/10.14201/scero20215238199
  • Morán, L., Gómez, L. E., & Alcedo, M. A. (2019). Inclusión social y autodeterminación: los retos en la calidad de vida de los jóvenes con autismo y discapacidad intelectual [Social inclusion and selfdetermination: The challenges in the quality of life of youth with autism and intellectual disability]. Siglo Cero, 50(3), 29-46. https://doi.org/10.14201/scero20195032946
  • Muñiz, J., & Fonseca-Pedrero, E. (2019). Diez pasos para la construcción de un test [Ten steps for test development]. Psicothema, 31(1), 7-16. https://doi.org/10.7334/psicothema2018.291
  • Navas, P., Gómez, L. E., Verdugo, M. A., & Schalock, R. L. (2012). Derechos de las personas con discapacidad intelectual: implicaciones de la Convención de Naciones Unidas [Rights of People with Intellectual Disabilities: Implications of the United Nations Convention]. Siglo Cero, 43(3), 7-28.
  • Randolph, J. J. (2008). Online Kappa Calculator [Computer software]. http://justus.randolph.name/kappa
  • Schalock, R. L., Gómez, L. E., Verdugo, M. A., & Claes, C. (2017). Evidence and evidence-based practices: Are we there yet? Intellectual and Developmental Disabilities, 55, 112-119. https://doi.org/10.1352/1934- 9556-55.2.112.
  • Schalock, R. L., Luckasson, R., & Tassé, M. J. (2019). The contemporary view of intellectual and developmental disabilities: Implications for psychologists. Psicothema, 31(3), 223-228. https://doi.org/10.7334/ psicothema2019.119
  • Schalock, R. L., & Verdugo, M. A. (2002). Handbook on quality of life for human service practitioners. American Association on Mental Retardation.
  • Schalock, R. L., Verdugo, M. A., & Gómez, L. E. (2011). Evidence-based practices in the field of intellectual and developmental disabilities: An international consensus approach. Evaluation and Program Planning, 34, 273-282. https://doi.org/10.1016/j.evalprogplan.2010.10.004
  • Shogren, K. A., & Turnbull, H. R. (2014). Core concepts of disability policy, the convention on the rights of persons with disabilities, and public policy research with respect to developmental disabilities. Journal of Policy and Practice in Intellectual Disabilities, 11(1), 19-26. https://doi.org/10.1111/jppi.12065
  • Sireci, S., & Faulkner-bond, M. (2014). Validity evidence based on test content. Psicothema, 26(1), 100-107. https://doi.org/10.7334/psicothema2013.256
  • Swerts, C., Gómez, L. E., de Maeyer, J., Goedele, D. N., & Vandersplasschen, W. (2021). Development of the Quality of Life in Youth Services Scale (QOLYSS): Content-related validity evidence based on adolescents’ and expert reviewers’ perspectives. Applied Research in Quality of Life. Advance on line publication. https://doi.org/10.1007/s11482-021- 09921-x
  • Tichá, R., Qian, X., Stancliffe, R., Larson, S. A., & Bonardi, A. (2018). Alignment between the Convention on the Rights of Persons with Disabilities and the National Core Indicators Adult Consumer Survey. Journal of Policy and Practice in Intellectual Disabilities, 15, 247-255. https://doi.org/10.1111/jppi.12260
  • United Nations (2022). Status of ratification interactive dashboard. http://indicators.ohchr.org
  • Verdugo, M. A., Navas, P., Gómez, L. E., & Schalock, R. L. (2012). The concept of quality of life and its role in enhancing human rights in the field of intellectual disability. Journal of Intellectual Disability Research, 56(2), 1036-1045. https://doi.org/10.1111/j.1365- 2788.2012.01585.x
  • Verdugo, M. A., Schalock, R. L., & Gómez, L. E. (2021). El Modelo de Calidad de Vida y Apoyos: la unión tras veinticinco años de caminos paralelos [The Quality of Life Supports Model: Twenty-Five Years of Parallel Paths Have Come Together]. Siglo Cero, 53(3), 9-28. https://doi.org/10.14201/scero2021523928
  • Vicente, E., Guillén, E. V., Gómez, L. E., Ibáñez, A., & Sánchez, S. (2019). What do stakeholders understand by self-determination? Consensus for its evaluation. Journal of Applied Research in Intellectual Disabilities, 32, 206-218. https://doi.org/10.1111/jar.12523
Fuente de los datos: Dialnet