El constructo de calidad de vida en niños y adolescentes con discapacidades múltiples y profundaspropuesta para su evaluación
- Laura E. Gómez Sánchez 1
- Elsa Peña Suárez 1
- Mª Ángeles Alcedo Suárez 1
- Asunción Monsalve González 1
- Yolanda Fontanil Gómez 1
- Miguel Ángel Verdugo 2
- Víctor B. Arias González 3
- Benito Arias Martínez 4
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1
Universidad de Oviedo
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- 2 Instituto Universitario de Integración en la Comunidad, Universidad de Salamanca
- 3 Universidad de Talca, Chile
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4
Universidad de Valladolid
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ISSN: 2530-0350
Año de publicación: 2014
Volumen: 45
Número: 249
Páginas: 56-69
Tipo: Artículo
Otras publicaciones en: Siglo Cero: Revista Española sobre Discapacidad Intelectual
Resumen
Este estudio tiene como objetivo la propuesta de una definición operativa del constructo de calidad de vida para personas con discapacidades múltiples y profundas durante las etapas de la infancia y la adolescencia acorde con el modelo de calidad de vida de ocho dimensiones. Para ello, se llevó a cabo un estudio Delphi de tres rondas con 14 expertos en el que se pidió que evaluaran una propuesta de más de 200 ítems de acuerdo a cuatro criterios (idoneidad, importancia, observabilidad y sensibilidad), así como que propusieran otros nuevos si consideraban que quedaban aspectos relevantes del constructo por representar. Los criterios utilizados para considerar un ítem como válido se basaron en la media, la desviación típica y el porcentaje de acuerdo. El análisis de datos en las sucesivas rondas dio lugar a un banco formado por 167 ítems (entre originales, nuevos y reformulados) que constituyen una propuesta inicial para la evaluación de la calidad de vida de este colectivo.
Referencias bibliográficas
- Arias, B., Gómez, L.E., Verdugo, M.A. y Navas, P. (2010). Evaluación de la calidad de vida en drogodependencias mediante el modelo de Rasch. Revista Española de Drogodependencias, 2, 206-219.
- Arias, B., Verdugo, M.A., Navas, P. y Gómez, L.E. (2013). Analyzing the factor structure of adaptive behavior in children with and without intellectual disability. International Journal of Clinical and Health Psychology, 13, 155-166.
- Belva, B.C. y Matson, J.L. (2013). An examination of specific daily living skills deficits in adults with profound intellectual disabilities. Research in Developmental Disabilities, 34, 596-604.
- Borthwick-Duffy, S. (1990). Quality of life of persons with severe and profound mental retardation. En R. Schalock (Ed.), Quality of Life: Perspectives and Issues (pp. 177–192). Washington, DC: American Association on Mental Retardation.
- Gerber, F., Bessero, S., Robbiani, B., Courvoisier, D.S., Baud, M.A., Traoré, P.B., y Carminati, G. (2011). Comparing residential programmes for adults with autism spectrum disorders and intellectual disability: Outcomes of challenging behaviour and quality of life. Journal of Intellectual Disability Research, 55, 918-932. bibliografía doi: 10.1111/j.1365-2788.2011.01455.x
- Gómez, L.E., Arias, B., Verdugo, M.A. y Navas, P. (2012). Application of the Rasch Rating Scale Model to the assessment of quality of life of persons with intellectual disability. Journal of Intellectual & Developmental Disability, 37(29), 141-150.
- Gómez, L.E., Verdugo, M.A., Arias, B. y Arias, V. (2010). A comparison of alternative models of individual quality of life for social service recipients. Social Indicators Research, 101, 109-126.
- Gómez, L.E., Verdugo, M.A., Arias, B., Navas, P. y Schalock, R.L. (2013). The development and use of provider profiles at the organization and systems level. Evaluation & Program Planning, 40, 17-26.
- Gómez-Vela, M. y Verdugo, M.A. (2009). CCVA: Cuestionario de Evaluación de la Calidad de Vida de Alumnos Adolescentes. Madrid: CEPE.
- Goode, D.A. y Hogg, J. (1994). Towards an understanding of holistic quality of life in people with profound intellectual and multiple disabilities. En D. Goode (Ed.), Quality of Life for People with Disabilities: International Perspectives and Issues (pp. 197-207). Cambridge: Brookline Books.
- Horovitz, M., Matson, J.L., Sipes, M., Shoemaker, M., Belva, B. y Bamburg, J.W. (2011). Incidence and trends in psychopathology symptoms over time in adults with severe to profound intellectual disability. Research in Developmental Disabilities, 32, 685–692
- Kozlowski, A.M., Matson, J.L., Sipes, M., Hattier, M.A. y Bamburg, J.W. (2011). The relationship between psychopathology symptom clusters and the presence of comorbid psychopathology in individuals with severe to profound intellectual disability. Research in Developmental Disabilities, 32, 1610-1614.
- Li, C., Tsoi, E.W.S., Zhang, A.L., Chen, S. y Wang, C.K.J. (2013). Psychometric Properties of Self-reported Quality of Life Measures for People with Intellectual Disabilities: A Systematic Review. Journal of Developmental and Physical Disabilities, 25, 253–270.
- Matson, J.L., Cooper, C., Malone, C.J. y Moskow, S.L. (2008). The relationship of self-injuries behavior and other maladaptive behaviors among individuals with severe and profound intellectual disability. Research in Developmental Disabilities, 29, 141-148.
- Meule, A., Fath, K., Real, R.G.L., Sütterlin, S., Vögele, C. y Kübler, A. (2013). Quality of life, emotion regulation, and heart rate variability in individuals with intellectual disabilities and concomitant impaired vision. Psychology of Well-Being: Theory, Research and Practice, 3, 1-14.
- Nakken, H. y Vlaskamp, C. (2007). A need for a taxonomy for profound intellectual and multiple disabilities. Journal of Policy and Practice in Intellectual Disabilities, 4, 83–87.
- Navas, P., Verdugo, M.A., Arias, B. y Gómez, L.E. (2012). Development of an instrument for diagnosing significant limitations in adaptive behavior in early childhood. Research in Developmental Disabilities, 33, 1551-1559.
- Oullette-Kuntz, H. y McCreary, B. (1996). Quality of life assessment for people with severe developmental disabilities. En R. Renwick, I. Brown y M. Nagler (Ed.), Quality of Life in Health Promotion and Rehabilitation. Conceptual Approaches, Issues and Applications (pp. 268-278). Thousand Oaks, CA: Sage.
- Petry, K., Maes, B. y Vlaskamp, C. (2005). Domains of quality of life of people with profound multiple disabilities: The perspective of parents and direct support staff. Journal of Applied Research in Intellectual Disabilities, 18, 35-46.
- Petry, K., Maes, B. y Vlaskamp, C. (2007). Operationalizing quality of life for people with profound multiple disabilities: A Delphi study. Journal on Intellectual Disability Research, 52(5), 334–349.
- Petry, K., Maes, B. y Vlaskamp, C. (2009). Psychometric evaluation of a questionnaire to measure the quality of life of people with profound multiple disabilities (QOL-PMD). Research in Developmental Disabilities, 30, 1326-1336.
- Poppes, P., van der Putten, A.J.J. y Vlaskamp, C. (2010). Frequency and severity of challenging behaviour in people with profound intellectual and multiple disabilities. Research in Developmental Disabilities, 31, 1269-1275.
- Sabeh, E., Verdugo, M.A., Prieto, G. y Contini, E.N. (2009). CVI-CVIP: Cuestionario de Evaluación de la Calidad de Vida en la Infancia. Madrid: CEPE.
- Schalock, R.L. y Verdugo, M.A. (2002). Quality of life for human service practitioners [Calidad de vida. Manual para profesionales de la educación, salud y servicios sociales]. Washington, DC: American Association on Mental Retardation [Traducido al castellano por M. A. Verdugo y C. Jenaro.. Madrid: Alianza].
- Schalock, R.L. y Verdugo, M.A. (2012). A conceptual and measurement framework to guide policy development and systems change. Journal of Policy and Practice in Intellectual Disabilities, 7, 71-81.
- Schalock, R.L., Verdugo, M.A. y 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.
- Tassé, M.J. (2013). ¿Qué son las limitaciones significativas en conducta adaptativa en personas con discapacidades intelectuales y del desarrollo? Siglo Cero, 44, 22-33.
- Townsend-White, C., Pham, A.N.T. y Vassos, M.V. (2012). A systematic review of quality of life measures for people with intellectual disabilities and challenging behaviours. Journal of Intellectual Disability Research, 56(3), 270-284.
- Van Loon, J.H.M., Bonham, G. S., Peterson, D.D., Schalock, R.L., Claes, C. y Decramer, A.E.M. (2013). The use of evidence-based outcomes in systems and organizations providing services and supports to persons with intellectual disability. Evaluation and Program Planning, 36, 80-87.
- Verdugo, M.A., Gómez, L.E., Arias, B., Santamaría, M., Clavero, D. y Tamarit, J. (2013). Evaluación de la calidad de vida en personas con discapacidad intelectual: la escala INICO-FEAPS. Siglo Cero, 44(3), 6-20.
- Verdugo, M.A., Gómez, L.E., Arias, B., Santamaría, M., Navallas, E., Fernández, S. e Hierro, I. (2013). Evaluación de la calidad de vida en personas con discapacidades significativas: la escala San Martín. Siglo Cero, 44(4), 6-20.
- Verdugo, M.A., Arias, B., Gómez L.E. y Schalock, R.L. (2010). Development of an objective instrument to assess quality of life in social services: Reliability and validity in Spain. International Journal of Clinical and Health Psychology, 10(1), 105-123. Retrieved from http://www.aepc.es/ijchp/articulos_pdf/ijchp-343.pdf
- Verdugo, M.A., Gómez, L.E., Arias, B., Navas, P. y Schalock, R.L. (2014). Measuring quality of life in persons with intellectual and multiple disabilities: validation of the San Martín Scale. Research in Developmental Disabilities, 35(1), 75-86.