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FAMILY QUALITY OF LIFE: CONTENT VALIDITY OF A TOOL FOR FAMILIES OF ADULTS WITH INTELLECTUAL DISABILITIES IN BRAZIL

Yıl 2015, Cilt: 3 , 57 - 65, 01.09.2015

Öz

On an international level,
studies on the quality of life (QOL) are becoming more and more frequent, and
few of them focus on the study of the quality of life of people with DI and
their families. All of these studies identify a number of fields or areas that
define the QoL, on both individual and family levels (Brown, MacAdam-Crisp,
Wang, & Iarocci, 2006; Turnbull
, Brown, & Turnbull, 2004; Schalock et al.,
2002). In Brazil, legal guidelines exist that are moving relatively forward
with respect to people with disabilities. However, in spite of all of the
legislation and benefits, the insertion or inclusion of people with
disabilities in the job market, schools and leisure centers is still low. The
aim of the current research is to present the translation, adaptation and
content validation of the Beach Center Family Quality of Life (Summers, Poston, Turnbull, Marquis,
Hoffman, & Mannan, 2005) in the Brazilian context. To carry out the
adaptation and standardization of the scale the seven steps proposed by Tassé
and Craig (1999) and Beaton, Bombardier, Guillemin and Ferraz (2000) will be
followed: (1) translation/adaptation to Portuguese; (2) consolidation of
translation/adaptation; (3) preliminary normalization of translation; (4)
review/adjustments; (5) pilot test of translation; (6) revision/adjustment of
translation; (7) standardization the scale and obtaining index of validity and
reliability. The research is currently on Step 4, review/adjustments, in which
the content validity is implemented in order to achieve semantic, conceptual,
idiomatic and experimental equivalence between the original tool and the final
one (Tassé & Craig, 1999;
Beaton et al., 2000). It is important to mention
that the aim of the research is to understand the family quality of life, not
only of the person with intellectual disabilities, but those of all of their
family members.

Kaynakça

  • Amiralian, Maria Lúcia T. M (1997). Compreendendo o cego: uma visão psicanalítica da cegueira por meio de Desenhos-Estórias. São Paulo: Casa do Psicólogo. Aznar, A. S. & Castañón, D. G. (2005). Quality of life from the point of view of Latin American families: A participative research study. Journal of Intellectual Disability Research, 49, 784–788. Beaton, D. E., Bombardier, C., Guillemin, F., & Ferraz, M.B. (2000). Guidelines for the process of cross-cultural adaptation of self´report measures. Spine, 25(24), 3186-3191 Belarmino, Joana (1997). Associativismo e Política: A luta dos grupos estigmatizados pela cidadania plena. João Pessoa: Idéia. Brasil, (1988). Constituição da República Federativa do Brasil de 1988. Diário Oficial da União. Brasília. Brasil, (1993). Lei Federal n.º 8.742 de 07/12/1993. Diário Oficial da União. Brasília. Brasil, (2009). Decreto Nº 6.949, de 25 de agosto de 2009. Convenção sobre os Direitos das Pessoas com Deficiência, Diário Oficial da União. Brasília. Brasil, (2013). Estatuto da pessoa com deficiência. Retrieved from: http://www.prt21.mpt.gov.br Brown, R. I., MacAdam-Crisp, J., Wang, M., & 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. Diniz, Débora (2007). O que é deficiência. São Paulo: Brasiliense. Giné, C. (2004). Servicios y calidad de vida para las personas con discapacidad intelectual [Services and quality of life for people with intellectual disabilities]. Revista Española sobre Discapacidad Intelectual, 35(2), 1-14. Giné, C. G., Vilaseca, R., Gràcia, M., Simón, C., Dalmau, M., Salvador, F. ... Mas, J. M. (2013). Las escalas de calidad de vida familiar (cdvf-e). Apoyo y orientación para la intervención. In: Revista Siglo Cero, v. 44 (3), n.247, p. 21-36. Healy, K. (2005). Social work theories in context: Creating frameworks for practice. Basingstoke, UK: Palgrave Macmillan. Mazzota, Marcos José Silveira (2005). Educação Especial no Brasil: História e políticas. 5ª edição. São Paulo: Cortez. Senac. DN (2006). Pessoas com deficiência: educação e trabalho. Rio de Janeiro: SENAC/DEP/CEAD, 32. Silva, Luciene Maria da (2006). A deficiência como expressão da diferença. Educação em Revista. Universidade Federal de Minas Gerais. Faculdade de Educação – n. 1 (1985). Belo Horizonte: FAE/UFMG, n. 44. Summers, J.A., Poston, D.J., Turnbull, A.P., Marquis, J.G., Hoffman, L., & Mannan, H. (2005). Conceptualizing and measuring family quality of life. Journal of Intellectual Disability Research, 49 (10), 777-783 Schalock, R. L., Brown, I. Brown, R., Cummins, R. A., Felce, D., Matikka, L. … Parmenter, T. (2002). Conceptualization, measurement, and application of quality of life for persons with intellectual disabilities: Results of an international panel of experts. Mental Retardation, 40 (6), 457-470. Stemler, Steve (2001). An overview of content analysis. Practical Assessment, Research & Evaluation, 7(17). Retrieved from: http://PAREonline.net/getvn.asp?v=7&n=17. Tassé, M.J. & Craig, E.M. (1999). Critical issues in the cross-cultural assessment of adaptive behavior. In R.L. Schalock (Ed.), Adaptive behavior and its measurement: Implications for the field of mental retardation. Washington, DC: AAMR Turnbull, A., Bronw, I., & Turnbull, R. (2004). Families and persons with mental retardation and quality of life: International perspectives. Washington, DC: American Association on Mental Retardation. Verdugo, M.A. (2006) Cómo mejorar la calidad de vida de las personas con discapacidad. Instrumentos y estrategias de evaluación. Salamanca: Amarú Ediciones. Zuna, N. I., Seling, J. P., Summers, J. A., & Turnbull, A. P. (2009). Confirmatory factor analysis of a family quality of life scale for families of kindergarden children without disabilities. Journal of Early Intervention, 31(2), 111-125. Zuna, N., Summers, J. A., Turnbull, A. P., Hu, X., & Xu, S. (2010). Theorizing about family quality of life. In R. Kober (Ed.), Enhancing the quality of life of people with intellectual disabilities: From theory to practice (pp. 241–278). Dordrecht, the Netherlands: Springer.
Yıl 2015, Cilt: 3 , 57 - 65, 01.09.2015

Öz

Kaynakça

  • Amiralian, Maria Lúcia T. M (1997). Compreendendo o cego: uma visão psicanalítica da cegueira por meio de Desenhos-Estórias. São Paulo: Casa do Psicólogo. Aznar, A. S. & Castañón, D. G. (2005). Quality of life from the point of view of Latin American families: A participative research study. Journal of Intellectual Disability Research, 49, 784–788. Beaton, D. E., Bombardier, C., Guillemin, F., & Ferraz, M.B. (2000). Guidelines for the process of cross-cultural adaptation of self´report measures. Spine, 25(24), 3186-3191 Belarmino, Joana (1997). Associativismo e Política: A luta dos grupos estigmatizados pela cidadania plena. João Pessoa: Idéia. Brasil, (1988). Constituição da República Federativa do Brasil de 1988. Diário Oficial da União. Brasília. Brasil, (1993). Lei Federal n.º 8.742 de 07/12/1993. Diário Oficial da União. Brasília. Brasil, (2009). Decreto Nº 6.949, de 25 de agosto de 2009. Convenção sobre os Direitos das Pessoas com Deficiência, Diário Oficial da União. Brasília. Brasil, (2013). Estatuto da pessoa com deficiência. Retrieved from: http://www.prt21.mpt.gov.br Brown, R. I., MacAdam-Crisp, J., Wang, M., & 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. Diniz, Débora (2007). O que é deficiência. São Paulo: Brasiliense. Giné, C. (2004). Servicios y calidad de vida para las personas con discapacidad intelectual [Services and quality of life for people with intellectual disabilities]. Revista Española sobre Discapacidad Intelectual, 35(2), 1-14. Giné, C. G., Vilaseca, R., Gràcia, M., Simón, C., Dalmau, M., Salvador, F. ... Mas, J. M. (2013). Las escalas de calidad de vida familiar (cdvf-e). Apoyo y orientación para la intervención. In: Revista Siglo Cero, v. 44 (3), n.247, p. 21-36. Healy, K. (2005). Social work theories in context: Creating frameworks for practice. Basingstoke, UK: Palgrave Macmillan. Mazzota, Marcos José Silveira (2005). Educação Especial no Brasil: História e políticas. 5ª edição. São Paulo: Cortez. Senac. DN (2006). Pessoas com deficiência: educação e trabalho. Rio de Janeiro: SENAC/DEP/CEAD, 32. Silva, Luciene Maria da (2006). A deficiência como expressão da diferença. Educação em Revista. Universidade Federal de Minas Gerais. Faculdade de Educação – n. 1 (1985). Belo Horizonte: FAE/UFMG, n. 44. Summers, J.A., Poston, D.J., Turnbull, A.P., Marquis, J.G., Hoffman, L., & Mannan, H. (2005). Conceptualizing and measuring family quality of life. Journal of Intellectual Disability Research, 49 (10), 777-783 Schalock, R. L., Brown, I. Brown, R., Cummins, R. A., Felce, D., Matikka, L. … Parmenter, T. (2002). Conceptualization, measurement, and application of quality of life for persons with intellectual disabilities: Results of an international panel of experts. Mental Retardation, 40 (6), 457-470. Stemler, Steve (2001). An overview of content analysis. Practical Assessment, Research & Evaluation, 7(17). Retrieved from: http://PAREonline.net/getvn.asp?v=7&n=17. Tassé, M.J. & Craig, E.M. (1999). Critical issues in the cross-cultural assessment of adaptive behavior. In R.L. Schalock (Ed.), Adaptive behavior and its measurement: Implications for the field of mental retardation. Washington, DC: AAMR Turnbull, A., Bronw, I., & Turnbull, R. (2004). Families and persons with mental retardation and quality of life: International perspectives. Washington, DC: American Association on Mental Retardation. Verdugo, M.A. (2006) Cómo mejorar la calidad de vida de las personas con discapacidad. Instrumentos y estrategias de evaluación. Salamanca: Amarú Ediciones. Zuna, N. I., Seling, J. P., Summers, J. A., & Turnbull, A. P. (2009). Confirmatory factor analysis of a family quality of life scale for families of kindergarden children without disabilities. Journal of Early Intervention, 31(2), 111-125. Zuna, N., Summers, J. A., Turnbull, A. P., Hu, X., & Xu, S. (2010). Theorizing about family quality of life. In R. Kober (Ed.), Enhancing the quality of life of people with intellectual disabilities: From theory to practice (pp. 241–278). Dordrecht, the Netherlands: Springer.
Toplam 1 adet kaynakça vardır.

Ayrıntılar

Bölüm Articles
Yazarlar

Daniela Bitencourt Bu kişi benim

Marta Gràcia Bu kişi benim

Francesc Beltran Bu kişi benim

Yayımlanma Tarihi 1 Eylül 2015
Yayımlandığı Sayı Yıl 2015 Cilt: 3

Kaynak Göster

APA Bitencourt, D., Gràcia, M., & Beltran, F. (2015). FAMILY QUALITY OF LIFE: CONTENT VALIDITY OF A TOOL FOR FAMILIES OF ADULTS WITH INTELLECTUAL DISABILITIES IN BRAZIL. The Eurasia Proceedings of Educational and Social Sciences, 3, 57-65.