Percepciones parentales sobre el impacto del síndrome de Down en la familia
Resumen La parentalidad de un hijo con síndrome de Down supone un desafío, no sólo para los padres, sino también para el conjunto del sistema familiar. La presente investigación se propone analizar, desde un punto de vista cualitativo, la visión que los propios padres tienen sobre el impacto, tanto positivo como negativo, que la presencia de un hijo con SD provoca en la familia. Para ello, se han analizado las entrevistas realizadas a 10 participantes (3 padres, 3 madres y 4 profesionales del ámbito de la educación especial). Los resultados revelan que, a pesar de que el diagnóstico del SD en un hijo sea un evento inesperado y estresante para la familia, la percepción general del impacto familiar es positiva.
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Adamson, L. B., Deckner, D. F. y Bakeman, R. (2010). Early interests and joint engagement in typical development, autism and Down syndrome. Journal of Autism and Developmental Disorders, 40, 665 – 676. doi: 10.1007/s10803-009-0914-1.
Albuquerque, S., Pereira, M., Fonseca, A. y Canavarro, C. (2012). Impacto familiar e ajustamento de pais de crianças com diagnóstico de anomalia congênita: influência dos determinantes da criança. Revista de Psiquiatría Clínica, 39, 136 – 141.
Almasri, N. A., Palisano, R. J., Dunst, C. J., Chiarello, L. A., O'Neil, M. E. y Polansky, M. (2011). Determinants of needs of families of children and youth with cerebral palsy. Children's Health Care, 40(2), 130 – 154. doi: 10.1080/02739615.2011.564568
Arumugam, A., Raja, K., Venugopalan, M., Chandrasekaran, B., Kovanur, K., Muthusamy, H. y Shanmugam, N. (2015). Down syndrome: A narrative review with a focus on anatomical features. Clinical Anatomy, 29, 568 – 577. doi: 10.1002/ca.22672
Choi, H. y Riper, M. V. (2016). Maternal perceptions to open-ended questions about life with Down syndrome in Korea. The Qualitative Report, 21(2), 288 – 298.
Collins, T. y Coughlan, B. (2016). Experiences of mothers in Romania after hearing from medical professionals that their child has a disability. Journal of Policy and Practice in Intellectual Disabilities, 13(1), 4 – 14. doi: 10.1111/jppi.12141
Cunningham, C. (1996). Families of children with Down syndrome. Down Syndrome Research and Practice, 4(3), 87 – 95.
Cuskelly, M. (2016). Contributors to adult sibling relationships and intention to care of siblings of individuals with Down syndrome. American Journal on Intellectual and Developmental Disabilities, 121(3), 204 – 218. doi: 10.1352/1944-7558-121.3.204
Durmaz, A., Cankaya, T., Durmaz, B., Vahabi, A., Gunduz, C., Cogulu, O. y Ozkinay, F. (2011). Interview with parents of children with Down syndrome: their perceptions and feelings. The Indian Journal of Pediatrics, 78(6), 698 – 702. doi: 10.1007/s12098-010-0315-7
Farber, B. y Kirk, S. A. (1959). Effects of a severely mentally retarded child on family integration. Monographs of the Society for Research in Child Development, 24, 1 – 112.
Federación Estatal de Asociaciones de Profesionales de la Atención Temprana – GAT. (2011). Mejora del proceso de comunicación del diagnóstico de trastorno en el desarrollo o discapacidad en la primera infancia. La primera noticia. Madrid: Real Patronato sobre Discapacidad.
Flórez, J. (2012). Actitudes y mentalidades de la sociedad ante el síndrome de Down. Revista Síndrome de Down, 29, 65 – 69.
Foley, K. R., Girdler, S., Downs, J., Jacoby, P., Bourke, J., Lennox, N., Einfeld, S., Llewellyn, G., Parmenter, T. R. y Leonard, H. (2014). Relationship between family quality of life and day occupations of young people with Down syndrome. Social Psychiatry and Psychiatric Epidemiology, 49(9), 1455 – 1465. doi: 10.1007/s00127-013-0812-x
Gath, A. (1977). The impact of an abnormal child upon the parents. British Journal of Psychiatry, 130, 405 – 410.
Glidden, L. M., Bamberger, K. T., Turek, K. C. y Hill, K. L. (2010). Predicting mother/father–child interactions: parental personality and well-being, socioeconomic variables and child disability status. Journal of Applied Research in Intellectual Disabilities, 23(1), 3 – 13. doi: 10.1111/j.1468-3148.2009.00549.x
Graff, C., Mandleco, B., Dyches, T., Coverston, C., Roper, S. y Freeborn, D. (2012). Perspectives of adolescent siblings of children with Down syndrome who have multiple health problems. Journal of Family Nursing, 18(2), 175 – 199. doi: 10.1177/1074840712439797
Green, S. E. (2007). “We’re tired, not sad”: benefits and burdens of mothering a child with a disability. Social Science and Medicine, 64(1), 150–163. doi: 10.1016/j.socscimed.2006.08.025.
Greiner, A. L. y Conklin, J. (2015). Breaking bad news to a pregnant woman with a fetal abnormality on ultrasound. Obstetrical and Gynecological Survey, 70(1), 39 – 44. doi: 10.1097/ogx.0000000000000149
Haimour, A. I. y Abu-Hawwash, R. M. (2012). Evaluating quality of life of parents having a child with disability. International Interdisciplinary Journal of Education, 1(2), 37 – 43.
Hastings, R. P. y Taunt, H. M. (2002). Positive perceptions in families of children with developmental disabilities. American Journal on Mental Retardation, 107(2), 116 – 127. doi: 10.1352/0895-8017(2002)107<0116:PPIFOC>2.0.CO;2.
Helff, C. M. y Glidden, L. M. (1998). More positive or less negative? Trends in research on adjustment of families rearing children with developmental disabilities. Mental Retardation, 36(6), 457 – 464.
Hornby, G. (1995). Effects on fathers of children with Down syndrome. Journal of Child and Family Studies, 4(2), 239 – 255.
Kramm, E. R. (1963). Families of mongoloid children. Washington D. C.: Government Printing Office.
Lancet Neurology, The. (2016). Dementia in Down's syndrome: still much to learn. The Lancet Neurology, 15(8), 775. doi: 10.1016/S1474-4422(16)30082-5
Lanfranchi, S. y Vianello, R. (2012). Stress, locus of control, and family cohesion and adaptability in parents of children with Down, Williams, Fragile X, and Prader-Willi syndromes. American Journal on Intellectual and Developmental Disabilities, 117(3), 207 – 224. doi: 10.1352/1944-7558-117.3.207
Migerode, F., Maes, B., Buysse, A. y Brondeel, R. (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), 487 – 503. doi: 10.1007/s10882-012-9285-1
Miller, E., Buys, L. y Woodbridge, S. (2012). Impact of disability on families: grandparents' perspectives. Journal of Intellectual Disability Research, 56(1), 102 – 110. doi: 10.1111/j.1365-2788.2011.01403.x
Mitchell, D. B., Hauser?Cram, P. y Crossman, M. K. (2015). Relationship dimensions of the “Down syndrome advantage”. Journal of Intellectual Disability Research, 59(6), 506 – 518. doi: 10.1111/jir.12153
Mullins, D., Daly, E., Simmons, A., Beacher, F., Foy, C. M., Lovestone, S., Hallahan, B. Murphy, K. C. y Murphy, D. G. (2013). Dementia in Down’s syndrome: an MRI comparison with Alzheimer’s disease in the general population. Journal of neurodevelopmental disorders, 5(19), 1 -13. doi: 10.1186/1866-1955-5-19
Nelson, B. S., Monk, J. K., Malone, J., Staats, N., Tanner, A. y Springer, N. P. (2016). Comparing parents of children with Down syndrome at different life span stages. Journal of Marriage and Family, 78(4), 1131 – 1148. doi: 10.1111/jomf.12312
Pereira – Silva, N. L., Oliveira, L. y Rooke, M. (2015). Famílias com adolescente com síndrome de Down: apoio social e recursos familiares. Avances en Psicología Latinoamericana, 33(2), 269 – 283. doi: 10.12804/apl33.02.2015.07
Povee, K., Roberts, L., Bourke, J. y Leonard, H. (2012). Family functioning in families with a child with Down syndrome: a mixed methods approach. Journal of Intellectual Disability Research, 56(10), 961 – 973. doi: 10.1111/j.1365-2788.2012.01561.xRoizen, N. y Patterson, D. (2003) Down's syndrome. The Lancet, 361(9365), 1281 – 1289. doi: 10.1016/S0140-6736(03)12987-X
Rooke, M. I. y Pereira – Silva, N. L. (2016). Indicativos de resiliência familiar em famílias de crianças com síndrome de Down. Estudos de piscología (Campinas), 33(1), 117 – 126. doi: 10.1590/1982-027520160001000012
Schonell, F. J. y Watts, B. H. (1956). A first survey of the effects of a subnormal child on the family unit. American Journal of Mental Deficiency, 61, 210 – 219.
Sherman, S. L., Allen, E. G., Bean, L. H. y Freeman, S. B. (2007). Epidemiology of Down syndrome. Mental Retardation and Developmental Disabilities Research Reviews, 13(3), 221 – 227.
Skotko, B. G. y Levine, S. P. (2006). What the other children are thinking: brothers and sisters of persons with Down syndrome. American Journal of Medical Genetics, 142C, 180 – 186.
Skotko, B. G., Levine, S. P. y Goldstein, R. (2011a). Having a son or daughter with Down syndrome: perspectives from mothers and fathers. American Journal of Medical Genetics Part A, 155(10), 2335 – 2347. doi: 10.1002/ajmg.a.34293
Skotko, B. G., Levine, S. P. y Goldstein, R. (2011b). Having a brother or sister with Down syndrome: perspectives from siblings. American Journal of Medical Genetics Part A, 155(10), 2348 – 2359. doi: 10.1002/ajmg.a.34228
Skotko, B. G., Levine, S. P., Macklin, E. A. y Goldstein, R. D. (2015). Family perspectives about Down syndrome. American Journal of Medical Genetics Part A, 9999A, 1 – 12. doi: 10.1002/ajmg.a.37520
Stein, R. E. K. y Riessman, C. K. (1980). The development of the Impact on Family Scale: preliminary findings. Medical Care, 18, 465 – 472.
Turnbull, A. P. y Turnbull, H. R. (2001). Families, professionals and exceptionality: collaborating for empowerment (4th ed.). Upper Saddle River: Prentice Hall.
Von Bertalanffy, L. (1968). General systems theory: foundations, development, applications. Nueva York: George Braziller.
Whittingham, K., Wee, D., Sanders, M. R. y Boyd, R. (2013). Sorrow, coping and resiliency: parents of children with cerebral palsy share their experiences. Disability and rehabilitation, 35(17), 1447 – 1452. Woodbridge, S., Buys, L. y Miller, E. (2011). ‘My grandchild has a disability’: impact on grandparenting identity, roles and relationships. Journal of Aging Studies, 25(4), 355 – 363. doi: 10.1016/j.jaging.2011.01.002
Albuquerque, S., Pereira, M., Fonseca, A. y Canavarro, C. (2012). Impacto familiar e ajustamento de pais de crianças com diagnóstico de anomalia congênita: influência dos determinantes da criança. Revista de Psiquiatría Clínica, 39, 136 – 141.
Almasri, N. A., Palisano, R. J., Dunst, C. J., Chiarello, L. A., O'Neil, M. E. y Polansky, M. (2011). Determinants of needs of families of children and youth with cerebral palsy. Children's Health Care, 40(2), 130 – 154. doi: 10.1080/02739615.2011.564568
Arumugam, A., Raja, K., Venugopalan, M., Chandrasekaran, B., Kovanur, K., Muthusamy, H. y Shanmugam, N. (2015). Down syndrome: A narrative review with a focus on anatomical features. Clinical Anatomy, 29, 568 – 577. doi: 10.1002/ca.22672
Choi, H. y Riper, M. V. (2016). Maternal perceptions to open-ended questions about life with Down syndrome in Korea. The Qualitative Report, 21(2), 288 – 298.
Collins, T. y Coughlan, B. (2016). Experiences of mothers in Romania after hearing from medical professionals that their child has a disability. Journal of Policy and Practice in Intellectual Disabilities, 13(1), 4 – 14. doi: 10.1111/jppi.12141
Cunningham, C. (1996). Families of children with Down syndrome. Down Syndrome Research and Practice, 4(3), 87 – 95.
Cuskelly, M. (2016). Contributors to adult sibling relationships and intention to care of siblings of individuals with Down syndrome. American Journal on Intellectual and Developmental Disabilities, 121(3), 204 – 218. doi: 10.1352/1944-7558-121.3.204
Durmaz, A., Cankaya, T., Durmaz, B., Vahabi, A., Gunduz, C., Cogulu, O. y Ozkinay, F. (2011). Interview with parents of children with Down syndrome: their perceptions and feelings. The Indian Journal of Pediatrics, 78(6), 698 – 702. doi: 10.1007/s12098-010-0315-7
Farber, B. y Kirk, S. A. (1959). Effects of a severely mentally retarded child on family integration. Monographs of the Society for Research in Child Development, 24, 1 – 112.
Federación Estatal de Asociaciones de Profesionales de la Atención Temprana – GAT. (2011). Mejora del proceso de comunicación del diagnóstico de trastorno en el desarrollo o discapacidad en la primera infancia. La primera noticia. Madrid: Real Patronato sobre Discapacidad.
Flórez, J. (2012). Actitudes y mentalidades de la sociedad ante el síndrome de Down. Revista Síndrome de Down, 29, 65 – 69.
Foley, K. R., Girdler, S., Downs, J., Jacoby, P., Bourke, J., Lennox, N., Einfeld, S., Llewellyn, G., Parmenter, T. R. y Leonard, H. (2014). Relationship between family quality of life and day occupations of young people with Down syndrome. Social Psychiatry and Psychiatric Epidemiology, 49(9), 1455 – 1465. doi: 10.1007/s00127-013-0812-x
Gath, A. (1977). The impact of an abnormal child upon the parents. British Journal of Psychiatry, 130, 405 – 410.
Glidden, L. M., Bamberger, K. T., Turek, K. C. y Hill, K. L. (2010). Predicting mother/father–child interactions: parental personality and well-being, socioeconomic variables and child disability status. Journal of Applied Research in Intellectual Disabilities, 23(1), 3 – 13. doi: 10.1111/j.1468-3148.2009.00549.x
Graff, C., Mandleco, B., Dyches, T., Coverston, C., Roper, S. y Freeborn, D. (2012). Perspectives of adolescent siblings of children with Down syndrome who have multiple health problems. Journal of Family Nursing, 18(2), 175 – 199. doi: 10.1177/1074840712439797
Green, S. E. (2007). “We’re tired, not sad”: benefits and burdens of mothering a child with a disability. Social Science and Medicine, 64(1), 150–163. doi: 10.1016/j.socscimed.2006.08.025.
Greiner, A. L. y Conklin, J. (2015). Breaking bad news to a pregnant woman with a fetal abnormality on ultrasound. Obstetrical and Gynecological Survey, 70(1), 39 – 44. doi: 10.1097/ogx.0000000000000149
Haimour, A. I. y Abu-Hawwash, R. M. (2012). Evaluating quality of life of parents having a child with disability. International Interdisciplinary Journal of Education, 1(2), 37 – 43.
Hastings, R. P. y Taunt, H. M. (2002). Positive perceptions in families of children with developmental disabilities. American Journal on Mental Retardation, 107(2), 116 – 127. doi: 10.1352/0895-8017(2002)107<0116:PPIFOC>2.0.CO;2.
Helff, C. M. y Glidden, L. M. (1998). More positive or less negative? Trends in research on adjustment of families rearing children with developmental disabilities. Mental Retardation, 36(6), 457 – 464.
Hornby, G. (1995). Effects on fathers of children with Down syndrome. Journal of Child and Family Studies, 4(2), 239 – 255.
Kramm, E. R. (1963). Families of mongoloid children. Washington D. C.: Government Printing Office.
Lancet Neurology, The. (2016). Dementia in Down's syndrome: still much to learn. The Lancet Neurology, 15(8), 775. doi: 10.1016/S1474-4422(16)30082-5
Lanfranchi, S. y Vianello, R. (2012). Stress, locus of control, and family cohesion and adaptability in parents of children with Down, Williams, Fragile X, and Prader-Willi syndromes. American Journal on Intellectual and Developmental Disabilities, 117(3), 207 – 224. doi: 10.1352/1944-7558-117.3.207
Migerode, F., Maes, B., Buysse, A. y Brondeel, R. (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), 487 – 503. doi: 10.1007/s10882-012-9285-1
Miller, E., Buys, L. y Woodbridge, S. (2012). Impact of disability on families: grandparents' perspectives. Journal of Intellectual Disability Research, 56(1), 102 – 110. doi: 10.1111/j.1365-2788.2011.01403.x
Mitchell, D. B., Hauser?Cram, P. y Crossman, M. K. (2015). Relationship dimensions of the “Down syndrome advantage”. Journal of Intellectual Disability Research, 59(6), 506 – 518. doi: 10.1111/jir.12153
Mullins, D., Daly, E., Simmons, A., Beacher, F., Foy, C. M., Lovestone, S., Hallahan, B. Murphy, K. C. y Murphy, D. G. (2013). Dementia in Down’s syndrome: an MRI comparison with Alzheimer’s disease in the general population. Journal of neurodevelopmental disorders, 5(19), 1 -13. doi: 10.1186/1866-1955-5-19
Nelson, B. S., Monk, J. K., Malone, J., Staats, N., Tanner, A. y Springer, N. P. (2016). Comparing parents of children with Down syndrome at different life span stages. Journal of Marriage and Family, 78(4), 1131 – 1148. doi: 10.1111/jomf.12312
Pereira – Silva, N. L., Oliveira, L. y Rooke, M. (2015). Famílias com adolescente com síndrome de Down: apoio social e recursos familiares. Avances en Psicología Latinoamericana, 33(2), 269 – 283. doi: 10.12804/apl33.02.2015.07
Povee, K., Roberts, L., Bourke, J. y Leonard, H. (2012). Family functioning in families with a child with Down syndrome: a mixed methods approach. Journal of Intellectual Disability Research, 56(10), 961 – 973. doi: 10.1111/j.1365-2788.2012.01561.xRoizen, N. y Patterson, D. (2003) Down's syndrome. The Lancet, 361(9365), 1281 – 1289. doi: 10.1016/S0140-6736(03)12987-X
Rooke, M. I. y Pereira – Silva, N. L. (2016). Indicativos de resiliência familiar em famílias de crianças com síndrome de Down. Estudos de piscología (Campinas), 33(1), 117 – 126. doi: 10.1590/1982-027520160001000012
Schonell, F. J. y Watts, B. H. (1956). A first survey of the effects of a subnormal child on the family unit. American Journal of Mental Deficiency, 61, 210 – 219.
Sherman, S. L., Allen, E. G., Bean, L. H. y Freeman, S. B. (2007). Epidemiology of Down syndrome. Mental Retardation and Developmental Disabilities Research Reviews, 13(3), 221 – 227.
Skotko, B. G. y Levine, S. P. (2006). What the other children are thinking: brothers and sisters of persons with Down syndrome. American Journal of Medical Genetics, 142C, 180 – 186.
Skotko, B. G., Levine, S. P. y Goldstein, R. (2011a). Having a son or daughter with Down syndrome: perspectives from mothers and fathers. American Journal of Medical Genetics Part A, 155(10), 2335 – 2347. doi: 10.1002/ajmg.a.34293
Skotko, B. G., Levine, S. P. y Goldstein, R. (2011b). Having a brother or sister with Down syndrome: perspectives from siblings. American Journal of Medical Genetics Part A, 155(10), 2348 – 2359. doi: 10.1002/ajmg.a.34228
Skotko, B. G., Levine, S. P., Macklin, E. A. y Goldstein, R. D. (2015). Family perspectives about Down syndrome. American Journal of Medical Genetics Part A, 9999A, 1 – 12. doi: 10.1002/ajmg.a.37520
Stein, R. E. K. y Riessman, C. K. (1980). The development of the Impact on Family Scale: preliminary findings. Medical Care, 18, 465 – 472.
Turnbull, A. P. y Turnbull, H. R. (2001). Families, professionals and exceptionality: collaborating for empowerment (4th ed.). Upper Saddle River: Prentice Hall.
Von Bertalanffy, L. (1968). General systems theory: foundations, development, applications. Nueva York: George Braziller.
Whittingham, K., Wee, D., Sanders, M. R. y Boyd, R. (2013). Sorrow, coping and resiliency: parents of children with cerebral palsy share their experiences. Disability and rehabilitation, 35(17), 1447 – 1452. Woodbridge, S., Buys, L. y Miller, E. (2011). ‘My grandchild has a disability’: impact on grandparenting identity, roles and relationships. Journal of Aging Studies, 25(4), 355 – 363. doi: 10.1016/j.jaging.2011.01.002
Serrano Fernández, L., & Izuzquiza, D. (2018). Percepciones parentales sobre el impacto del síndrome de Down en la familia. Siglo Cero, 48(2), 81–98. https://doi.org/10.14201/scero20174828198
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