Qualidade de vida e autodeterminação em pessoas com deficiência. Avaliações dos pais
DOI:
https://doi.org/10.35362/rie630561Palavras-chave:
qualidade de vida, autodeterminação, deficiência intelectualResumo
O conceito de qualidade de vida nos permite valorizar o bem-estar das pessoas com deficiência intelectual e de suas famílias, ademais de ajustar os apoios às suas necessidades. Entre os domínios de qualidade de vida descritos pelos especialistas, a autodeterminação tem um papel central na conquista de uma vida plena. Neste artigo se apresenta um estudo com uma mostra de pais e mães (n = 40), aos quais se aplicou uma entrevista semiestruturada com a finalidade de avaliar de forma objetiva a qualidade de vida de seus filhos. Descrevem-se algumas de suas preocupações em relação a cada domínio de qualidade de vida, especialmente a autodeterminação. Os dados obtidos indicam que os pais observam um nível aceitável de bem-estar geral em seus filhos, além de se sentirem satisfeitos com os avanços pessoais e sociais conseguidos. Não obstante, também identificam obstáculos que comprometem seriamente a qualidade de vida, tais como a falta de serviços para promover a participação social, o custo emocional e econômico da deficiência mental, ou a escassez de oportunidades para a realização da autodeterminação. Estes resultados confirmam a necessidade de se propor e aplicar medidas, objetivas e subjetivas, sobre a qualidade de vida, para assim identificar as áreas prioritárias de melhoria e realizar os ajustes necessários
Downloads
Referências
Bailey, D. B. y otros (2007). «Maternal depression and developmental disability: research critique». Mental Retardation and Developmental Disabilities Research Reviews, 13(4), pp. 321-329.
Blacher, J. y Baker, B. L. (2007). «Positive impact of intellectual disability on families». American Journal on Mental Retardation, 112(5), pp. 330-348.
Bourke-Taylor, H., Howie, L. y Law, M. (2010). «Impact on caring for a school-aged child with a disability: understanding mother’s perspectives». Australian Occupational Therapy Journal, 57(2), pp. 127-136.
Brown, I. y Brown, R. (2009). «Choice as an aspect of quality of life for people with intellectual disabilities». Journal of Policy and Practice in Intellectual Disabilities, 6(1), pp. 11-18.
Burke, P. (2010). «Brothers and sisters of disabled children: the experience of disability by association». British Journal of Social Work, 40(6), pp. 1681-1699.
Burton, R., Morgan, M. y Davidson, J. (2005). «Does the daily choice making adults with intellectual disability meet the normalization principle?» Journal of Intellectual and Development Disabilities, 30(4), pp. 226-235.
Chowdhury, M. y Benson, B. A. (2011). «Deinstitutionalization and quality of life of individuals with intellectual disability: a review of the international literature». Journal of Policy and Practice in Intellectual Disabilities, 8(4), pp. 256-265.
Claes, C. y otros (2012). «The influence of support strategies, environmental factors, and client characteristics on quality of life-related personal outcomes». Research in Developmental Disabilities, 33(1), pp. 96-103.
Cummins, R. A. (1997). Comprehensive quality of life scale-intellectual/cognitive disability (5.ª ed.). Melbourne: Deakin University.
Denzin, N. K. y Lincoln, Y. S. (2000). Handbook of qualitative research. Thousand Oaks, ca: Sage Publications.
Escudero, J. M. y Martínez, B. (2011). «Educación inclusiva y cambio escolar». Revista Iberoamericana de Educación, 55, pp. 85-105.
Felce, D. y Perry, J. (1995). «Quality of life: its definition and measurement». Research in Developmental Disabilities, 16(1), pp. 51-74.
Guyard, A. y otros (2012). «Measuring the concept of impact of childhood disability on parents: Validation of a multidimensional measurement in a cerebral palsy population». Research in Developmental Disabilities, 33(5), pp. 1594-1604.
Hastings, R. P. y Taunt, H. M. (2002). «Positive perceptions in families of children with developmental disabilities». American Journal on Mental Retardation, 107(2), pp. 116-127.
Lizasoain, O. y otros (2011). Hermanos de personas con discapacidad intelectual. Guía para el análisis de necesidades y propuestas de apoyo. Logroño: Siníndice.
Migerode, F. y otros (2012). «Quality of life in adolescents with a disability and their parents: The mediating role of social support and resilience». Journal of Developmental and Physical Disabilities, 24(5), pp. 487-503.
Norling, D. y Broberg, M. (2013). «Parents of children with and without intellectual disability: couple relationship and individual well-being». Journal of Intellectual Disability Research, 57(6), pp. 552-566.
Nota, L. y otros (2007). «Self-determination, social abilities and the quality of life of people with intellectual disability». Journal of Intellectual Disability Research, 51(11), pp. 850-865.
Pallisera, M. (2011). «La planificación centrada en la persona (pcp): una vía para la construcción de proyectos personalizados con personas con discapacidad intelectual». Revista Iberoamericana de Educación, 56(3), pp. 1-12.
Peralta, F. y Arellano, A. (2010). «Familia y discapacidad. Una perspectiva teórica del enfoque centrado en la familia para promover la autodeterminación». Electronic Journal of Research in Educational Psychology, 8(3), pp. 1339-1362.
Petry, K., Maes, B. y Vlaskam, 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(1), pp. 35-46.
ROBLEDO, P., y GARCÍA, J.N. (2007). «El entorno parental en la intervención de personas con dificultades del desarrollo». En J.N., García (Ed.). Dificultades del desarrollo. Evaluación e intervención, (pp.307-315). Madrid: Ediciones Pirámide.
Schalock, R. L., Bonham, G. S. y Verdugo, M. A. (2008). «The conceptualization and measurement of quality of life: Implications for program planning and evaluation in the field of intellectual disabilities». Evaluation and Program Planning, 31(2), pp. 181-190.
Schalock, R. L. y otros (2002). «Conceptualization, measurement, and application of quality of life for people with intellectual disabilities: report of an international panel of experts». Mental Retardation, 40, pp. 457-470.
Turnbull, A. P. y Turnbull, H. R. (2001). «Self-determination for individuals with significant cognitive disabilities and their families». Association for Persons with Severe Handicaps, 26(1), pp. 56-62.
Whoqol Group (1995). The World Health Organization Quality of Life Assessment (whoqol): position paper from the World Health Organization. Social Science & Medicine, 41(10), pp. 1403-1409.
Walker, H. M. y otros (2011). «A socio-ecological approach to promote self-determination». Exceptionality: A Special Education Journal, 19(1), pp. 6-18.
Wehmeyer, M. L. (2009). «Autodeterminación y la tercera generación de prácticas de inclusión».Revista de Educación, 349, 45-67.
Wehmeyer, M .L. y Garner, N. W. (2003). «The impact of personal characteristics of people with intelectual and developmental disability on self-determination and autonomous functioning». Journal of Applied Research in Intellectual Disabilities, 16(4), pp. 255-265.
Wehmeyer, M. L. y otros (2011). «Personal self-determination and moderating variables that impact efforts to promote self-determination». Exceptionality: A Special Education Journal, 19(1), pp. 19-30.
Wehmeyer, M. L. y Schalock, R. (2001). «Self-determination and quality of life: implications for special education services and supports». Focus on Exceptional Children, 33(8), pp. 1-16.
Zulueta, A. y Peralta, F. (2008). «Percepciones de los padres acerca de la conducta autodeterminada de sus hijos». Siglo Cero. Revista Española sobre Discapacidad Intelectual, 39(1), pp. 31-43.
Blacher, J. y Baker, B. L. (2007). «Positive impact of intellectual disability on families». American Journal on Mental Retardation, 112(5), pp. 330-348.
Bourke-Taylor, H., Howie, L. y Law, M. (2010). «Impact on caring for a school-aged child with a disability: understanding mother’s perspectives». Australian Occupational Therapy Journal, 57(2), pp. 127-136.
Brown, I. y Brown, R. (2009). «Choice as an aspect of quality of life for people with intellectual disabilities». Journal of Policy and Practice in Intellectual Disabilities, 6(1), pp. 11-18.
Burke, P. (2010). «Brothers and sisters of disabled children: the experience of disability by association». British Journal of Social Work, 40(6), pp. 1681-1699.
Burton, R., Morgan, M. y Davidson, J. (2005). «Does the daily choice making adults with intellectual disability meet the normalization principle?» Journal of Intellectual and Development Disabilities, 30(4), pp. 226-235.
Chowdhury, M. y Benson, B. A. (2011). «Deinstitutionalization and quality of life of individuals with intellectual disability: a review of the international literature». Journal of Policy and Practice in Intellectual Disabilities, 8(4), pp. 256-265.
Claes, C. y otros (2012). «The influence of support strategies, environmental factors, and client characteristics on quality of life-related personal outcomes». Research in Developmental Disabilities, 33(1), pp. 96-103.
Cummins, R. A. (1997). Comprehensive quality of life scale-intellectual/cognitive disability (5.ª ed.). Melbourne: Deakin University.
Denzin, N. K. y Lincoln, Y. S. (2000). Handbook of qualitative research. Thousand Oaks, ca: Sage Publications.
Escudero, J. M. y Martínez, B. (2011). «Educación inclusiva y cambio escolar». Revista Iberoamericana de Educación, 55, pp. 85-105.
Felce, D. y Perry, J. (1995). «Quality of life: its definition and measurement». Research in Developmental Disabilities, 16(1), pp. 51-74.
Guyard, A. y otros (2012). «Measuring the concept of impact of childhood disability on parents: Validation of a multidimensional measurement in a cerebral palsy population». Research in Developmental Disabilities, 33(5), pp. 1594-1604.
Hastings, R. P. y Taunt, H. M. (2002). «Positive perceptions in families of children with developmental disabilities». American Journal on Mental Retardation, 107(2), pp. 116-127.
Lizasoain, O. y otros (2011). Hermanos de personas con discapacidad intelectual. Guía para el análisis de necesidades y propuestas de apoyo. Logroño: Siníndice.
Migerode, F. y otros (2012). «Quality of life in adolescents with a disability and their parents: The mediating role of social support and resilience». Journal of Developmental and Physical Disabilities, 24(5), pp. 487-503.
Norling, D. y Broberg, M. (2013). «Parents of children with and without intellectual disability: couple relationship and individual well-being». Journal of Intellectual Disability Research, 57(6), pp. 552-566.
Nota, L. y otros (2007). «Self-determination, social abilities and the quality of life of people with intellectual disability». Journal of Intellectual Disability Research, 51(11), pp. 850-865.
Pallisera, M. (2011). «La planificación centrada en la persona (pcp): una vía para la construcción de proyectos personalizados con personas con discapacidad intelectual». Revista Iberoamericana de Educación, 56(3), pp. 1-12.
Peralta, F. y Arellano, A. (2010). «Familia y discapacidad. Una perspectiva teórica del enfoque centrado en la familia para promover la autodeterminación». Electronic Journal of Research in Educational Psychology, 8(3), pp. 1339-1362.
Petry, K., Maes, B. y Vlaskam, 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(1), pp. 35-46.
ROBLEDO, P., y GARCÍA, J.N. (2007). «El entorno parental en la intervención de personas con dificultades del desarrollo». En J.N., García (Ed.). Dificultades del desarrollo. Evaluación e intervención, (pp.307-315). Madrid: Ediciones Pirámide.
Schalock, R. L., Bonham, G. S. y Verdugo, M. A. (2008). «The conceptualization and measurement of quality of life: Implications for program planning and evaluation in the field of intellectual disabilities». Evaluation and Program Planning, 31(2), pp. 181-190.
Schalock, R. L. y otros (2002). «Conceptualization, measurement, and application of quality of life for people with intellectual disabilities: report of an international panel of experts». Mental Retardation, 40, pp. 457-470.
Turnbull, A. P. y Turnbull, H. R. (2001). «Self-determination for individuals with significant cognitive disabilities and their families». Association for Persons with Severe Handicaps, 26(1), pp. 56-62.
Whoqol Group (1995). The World Health Organization Quality of Life Assessment (whoqol): position paper from the World Health Organization. Social Science & Medicine, 41(10), pp. 1403-1409.
Walker, H. M. y otros (2011). «A socio-ecological approach to promote self-determination». Exceptionality: A Special Education Journal, 19(1), pp. 6-18.
Wehmeyer, M. L. (2009). «Autodeterminación y la tercera generación de prácticas de inclusión».Revista de Educación, 349, 45-67.
Wehmeyer, M .L. y Garner, N. W. (2003). «The impact of personal characteristics of people with intelectual and developmental disability on self-determination and autonomous functioning». Journal of Applied Research in Intellectual Disabilities, 16(4), pp. 255-265.
Wehmeyer, M. L. y otros (2011). «Personal self-determination and moderating variables that impact efforts to promote self-determination». Exceptionality: A Special Education Journal, 19(1), pp. 19-30.
Wehmeyer, M. L. y Schalock, R. (2001). «Self-determination and quality of life: implications for special education services and supports». Focus on Exceptional Children, 33(8), pp. 1-16.
Zulueta, A. y Peralta, F. (2008). «Percepciones de los padres acerca de la conducta autodeterminada de sus hijos». Siglo Cero. Revista Española sobre Discapacidad Intelectual, 39(1), pp. 31-43.
Como Citar
Arellano, A., & Peralta , F. (2013). Qualidade de vida e autodeterminação em pessoas com deficiência. Avaliações dos pais. Revista Ibero-Americana De Educação, 63, 145–160. https://doi.org/10.35362/rie630561
Downloads
Publicado
2013-09-01
Edição
Seção
Artigos do monográfico
Licença
Os(as) autores(as) que publiquem nesta revista concordam com os seguintes termos:
