Parental perceptions of the impact of Down syndrome in the family
Abstract Parenting a child with Down syndrome is a challenge, not only for parents, but also for the whole family system. The present research aims to analyse, from a qualitative point of view, the vision that the parents themselves have of the impact, both positive and negative, that the presence of a child with DS causes in the family. To this end, interviews with 10 participants (3 parents, 3 mothers and 4 professionals in the field of special education) have been analysed. The results reveal that, although the diagnosis of SD in a child is an unexpected and stressful event for the family, the general perception of the family impact is positive.
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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). Parental perceptions of the impact of Down syndrome in the family. Siglo Cero, 48(2), 81–98. https://doi.org/10.14201/scero20174828198
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