At the time of diagnosis the needs of the son with Fragile X syndrome are priority
Abstract Families with a child with Fragile X syndrome (SXF) experience concerns and needs at the time of diagnosis that can trigger a crisis and affect family dynamics and well-being. This study, we analyze those manifested by 55 parents, 69,0% women and 25,9% men, between 27 and 67 years old (M = 47,91, SD = 9,59). The questionnaire “Development and Needs of Families” was applied. The most frequently verbalized needs as important or very important were: the possible health problems that your child may present, knowing the degree of dependence that your child will have, knowing what is going to happen in the future, knowing where to go for help, and know what are the most appropriate services. In contrast, the items with values, between little and something important, are those that evaluate the fact of having to stay longer at home and having to communicate the news to other people. Parents give more importance to the needs and problems related to the care, attention and future of their child than those that the disability may cause them or other family members.
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Artigas-Pallarés, J. (2011). Síndrome X Frágil. En J. Artigas-Pallarés y J. Narbona, Trastornos del neurodesarrollo (pp. 101-129). Barcelona: Viguera.
Bailey, D. B., Raspa, M., Bishop, E. y Holiday, D. (2009). No change in the age of diagnosis for fragile X syndrome: findings from a national parent survey. Pediatrics, 124 (2), 527-533.
Bailey, D. B., Raspa, M. y Olmsted, M. G. (2010). Using a parent survey to advance knowledge about the nature and consequences of fragile X syndrome. American Journal on Intellectual and Developmental Disabilities, 115 (6), 447-460.
Bailey, D. B., Raspa, M., Olmsted, M. y Holiday, D. B. (2008). Co-occurring conditions associated with FMR1 gene variations: Findings from a national parent survey. American Journal of Medical Genetics Part A, 146 (16), 2060-2069.
Bailey, D. B., Sideris, J., Roberts, J. y Hatton, D. (2008). Child and genetic variables associated with maternal adaptation to fragile X syndrome: A multidimensional analysis. American Journal of Medical Genetics Part A, 146 (6), 720-729.
Blacher, J. y Baker, B. L. (2007). Positive impact of intellectual disability on families. American Journal on Mental Retardation, 112 (5), 330-348.
Cherubini, Z. A., Bosa, C. A. y Bandeira, D. R. (2008). Estresse e autoconceito em pais e mães de crianças com a síndrome do X-frágil. Psicologia: Reflexão e Crítica, 21 (3), 409-417.
Fernández, A., Montero, D., Martínez, N., Orcasitas, J. R. y Villaescusa, M. (2015). Calidad de vida familiar: marco de referencia, evaluación e intervención. Siglo Cero, 46 (2), 7-29. doi: http://dx.doi.org/10.14201/scero2015462729.
Franco, V. y Apolónio, A. M. (2002). Desenvolvimiento, resiliencia e necessidades das familías com crianças deficientes. Ciencia Psicológica, 2 (8), 40-54.
Fundación Derecho y Discapacidad (2015). Estudio sobre las necesidades de las familias de personas con discapacidad. Madrid: Ministerio de Sanidad, Servicios Sociales e Igualdad.
Hartley, S. L., Seltzer, M. M., Head, L. y Abbeduto, L. (2012). Psychological well-being in fathers of adolescents and young adults with Down syndrome, fragile X syndrome, and autism. Family Relations, 61 (2), 327-342.
McCarthy, A., Cuskelly, M., van Kraayenoord, C. E. y Cohen, J. (2006). Predictors of stress in mothers and fathers of children with fragile X syndrome. Research in Developmental Disabilities, 27 (6), 688-704.
Medina, B. (2014). Fenotipo conductual: conocer para comprender. En B. Medina, Y. de Diego e I. García (Coords.), Síndrome X frágil. Manual para familias y profesionales (pp. 99-120). Tarragona: Publicaciones Altaria.
Medina, B. y García, I. (2014). Síndrome X Frágil: detección e intervención en el fenotipo conductual. International Journal of Developmental and Educational Psychology, 2 (1), 145-154.
Morais, L. y Franco, V. (2012). Percursos inclusivos familiares e pré-escolares de crianças com Síndrome do X Frágil-Estudo exploratório no contexto português. International Journal of Developmental and Educational Psychology, 1 (1), 225-234.
Morales, P. (2013). Estadística aplicada a las Ciencias Sociales. Fecha de consulta: 23 de noviembre de 2017. Disponible en http://www.upcomillas.es/personal/peter/investigacion/Tama/F1oMuestra.pdf.
Moro Gutiérrez, L., Jenaro Río, C. y Solano Sánchez, M. (2015). Miedos, esperanzas y reivindicaciones de padres de niños con TEA. Siglo Cero, 46 (4), 7-24. doi: http://dx.doi.org/10.14201/scero2015464724.
Oñate, L. y Calvete, E. (2017). Una aproximación cualitativa a los factores de resiliencia en familiares de personas con discapacidad intelectual en España. Psychosocial Intervention, 26, 93-101.
Ouyang, L., Grosse, S., Raspa, M. y Bailey, D. (2010). Employment impact and financial burden for families of children with fragile X syndrome: findings from the National Fragile X Survey. Journal of Intellectual Disability Research, 54 (10), 918-928.
Peralta, F. y Arellano, A. (2010). Familia y discapacidad. Una perspectiva teórico-aplicada del Enfoque Centrado en la Familia para promover la autodeterminación. Electronic Journal of Research in Educational Psychology, 8 (22), 1339-1362.
Poehlmann, J., Clements, M., Abbeduto, L. y Farsad, V. (2005). Family experiences associated with a child’s diagnosis of fragile X or Down syndrome: Evidence for disruption and resilience. Mental Retardation, 43 (4), 255-267.
Raspa, M., Bailey, D. B., Bann, C. y Bishop, E. (2014). Modeling family adaptation to Fragile X syndrome. American Journal on Intellectual and Developmental Disabilities, 119 (1), 33-48.
Rueda, N. M., González, A. F., García, J. R. O., Centeno, D. M. y Peral, M. V. (2016). Diseño de un programa de apoyo a la calidad de vida de familias con jóvenes y adultos con discapacidad intelectual. Siglo Cero, 47 (3), 47-67.
Wehmeyer, M. L. y Field, S. L. (2007). Self-determination: Instructional and assessment strategies. Corwin Press.
Wheeler, A. C., Skinner, D. G. y Bailey, D. B. (2008). Perceived quality of life in mothers of children with fragile X syndrome. American Journal on Mental Retardation, 113 (3), 159-177.
Bailey, D. B., Raspa, M., Bishop, E. y Holiday, D. (2009). No change in the age of diagnosis for fragile X syndrome: findings from a national parent survey. Pediatrics, 124 (2), 527-533.
Bailey, D. B., Raspa, M. y Olmsted, M. G. (2010). Using a parent survey to advance knowledge about the nature and consequences of fragile X syndrome. American Journal on Intellectual and Developmental Disabilities, 115 (6), 447-460.
Bailey, D. B., Raspa, M., Olmsted, M. y Holiday, D. B. (2008). Co-occurring conditions associated with FMR1 gene variations: Findings from a national parent survey. American Journal of Medical Genetics Part A, 146 (16), 2060-2069.
Bailey, D. B., Sideris, J., Roberts, J. y Hatton, D. (2008). Child and genetic variables associated with maternal adaptation to fragile X syndrome: A multidimensional analysis. American Journal of Medical Genetics Part A, 146 (6), 720-729.
Blacher, J. y Baker, B. L. (2007). Positive impact of intellectual disability on families. American Journal on Mental Retardation, 112 (5), 330-348.
Cherubini, Z. A., Bosa, C. A. y Bandeira, D. R. (2008). Estresse e autoconceito em pais e mães de crianças com a síndrome do X-frágil. Psicologia: Reflexão e Crítica, 21 (3), 409-417.
Fernández, A., Montero, D., Martínez, N., Orcasitas, J. R. y Villaescusa, M. (2015). Calidad de vida familiar: marco de referencia, evaluación e intervención. Siglo Cero, 46 (2), 7-29. doi: http://dx.doi.org/10.14201/scero2015462729.
Franco, V. y Apolónio, A. M. (2002). Desenvolvimiento, resiliencia e necessidades das familías com crianças deficientes. Ciencia Psicológica, 2 (8), 40-54.
Fundación Derecho y Discapacidad (2015). Estudio sobre las necesidades de las familias de personas con discapacidad. Madrid: Ministerio de Sanidad, Servicios Sociales e Igualdad.
Hartley, S. L., Seltzer, M. M., Head, L. y Abbeduto, L. (2012). Psychological well-being in fathers of adolescents and young adults with Down syndrome, fragile X syndrome, and autism. Family Relations, 61 (2), 327-342.
McCarthy, A., Cuskelly, M., van Kraayenoord, C. E. y Cohen, J. (2006). Predictors of stress in mothers and fathers of children with fragile X syndrome. Research in Developmental Disabilities, 27 (6), 688-704.
Medina, B. (2014). Fenotipo conductual: conocer para comprender. En B. Medina, Y. de Diego e I. García (Coords.), Síndrome X frágil. Manual para familias y profesionales (pp. 99-120). Tarragona: Publicaciones Altaria.
Medina, B. y García, I. (2014). Síndrome X Frágil: detección e intervención en el fenotipo conductual. International Journal of Developmental and Educational Psychology, 2 (1), 145-154.
Morais, L. y Franco, V. (2012). Percursos inclusivos familiares e pré-escolares de crianças com Síndrome do X Frágil-Estudo exploratório no contexto português. International Journal of Developmental and Educational Psychology, 1 (1), 225-234.
Morales, P. (2013). Estadística aplicada a las Ciencias Sociales. Fecha de consulta: 23 de noviembre de 2017. Disponible en http://www.upcomillas.es/personal/peter/investigacion/Tama/F1oMuestra.pdf.
Moro Gutiérrez, L., Jenaro Río, C. y Solano Sánchez, M. (2015). Miedos, esperanzas y reivindicaciones de padres de niños con TEA. Siglo Cero, 46 (4), 7-24. doi: http://dx.doi.org/10.14201/scero2015464724.
Oñate, L. y Calvete, E. (2017). Una aproximación cualitativa a los factores de resiliencia en familiares de personas con discapacidad intelectual en España. Psychosocial Intervention, 26, 93-101.
Ouyang, L., Grosse, S., Raspa, M. y Bailey, D. (2010). Employment impact and financial burden for families of children with fragile X syndrome: findings from the National Fragile X Survey. Journal of Intellectual Disability Research, 54 (10), 918-928.
Peralta, F. y Arellano, A. (2010). Familia y discapacidad. Una perspectiva teórico-aplicada del Enfoque Centrado en la Familia para promover la autodeterminación. Electronic Journal of Research in Educational Psychology, 8 (22), 1339-1362.
Poehlmann, J., Clements, M., Abbeduto, L. y Farsad, V. (2005). Family experiences associated with a child’s diagnosis of fragile X or Down syndrome: Evidence for disruption and resilience. Mental Retardation, 43 (4), 255-267.
Raspa, M., Bailey, D. B., Bann, C. y Bishop, E. (2014). Modeling family adaptation to Fragile X syndrome. American Journal on Intellectual and Developmental Disabilities, 119 (1), 33-48.
Rueda, N. M., González, A. F., García, J. R. O., Centeno, D. M. y Peral, M. V. (2016). Diseño de un programa de apoyo a la calidad de vida de familias con jóvenes y adultos con discapacidad intelectual. Siglo Cero, 47 (3), 47-67.
Wehmeyer, M. L. y Field, S. L. (2007). Self-determination: Instructional and assessment strategies. Corwin Press.
Wheeler, A. C., Skinner, D. G. y Bailey, D. B. (2008). Perceived quality of life in mothers of children with fragile X syndrome. American Journal on Mental Retardation, 113 (3), 159-177.
Medina-Gómez, B., & Franco, V. (2018). At the time of diagnosis the needs of the son with Fragile X syndrome are priority. Siglo Cero, 49(3), 95–108. https://doi.org/10.14201/scero201849395108
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