EL ESTRÉS DE LAS MADRES CON HIJOS/AS CON SÍNDROME DE DOWN: ANÁLISIS DESCRIPTIVO DE UNA MUESTRA ESPAÑOLA

Autores

  • Eva M. Rubio Guzmán Universidad Pontificia Comillas
  • Rosalía Mota López Universidad Pontificia Comillas

DOI:

https://doi.org/10.22478/ufpb.2179-7137.2018v7n1.38976

Palavras-chave:

estres, síndrome de Down, madres, crianza, familia

Resumo

El artículo describe el estrés de una muestra de madres españolas de niños con síndrome de Down entre 0 y 12 años, a partir de una tesis doctoral que estudió la adaptación familiar a la llegada de un niño con síndrome de Down aplicando para ello el modelo Doble ABCX de McCubbin y Patterson (1983). Los resultados expuestos pueden guiar futuras investigaciones que utilicen muestras mayores y estadísticamente representativas. El número de madres estudiadas es de 161, la mayoría de ellas casadas y en familias biparentales. Su edad media es 40,7 y proceden en mayor medida de las Comunidades Autónomas de Madrid y Andalucía. El instrumento utilizado ha sido el Índice de Estrés Parental en su versión abreviada de Abidin (1995). Consta de 36 afirmaciones en una escala tipo Likert de 1 a 5. En su versión original el Índice presenta un coeficiente de consistencia interna 0,91. En el presente estudio ésta ha sido de 0,94. La información relativa al resto de variables ha sido recogida mediante un cuestionario original elaborado para la investigación. Los resultados muestran que las madres no presentan un nivel de estrés elevado. Los recursos personales de los que disponen – crianza compartida, elevado nivel formativo e ingresos disponibles -, y el acceso a recursos de apoyo social informal y formal, les permiten afrontar en mejores condiciones la llegada del niño/a con discapacidad. Familiares cercanos, amigos y profesionales constituyen factores protectores de primer orden. Las madres del estudio tienen una valoración bastante positiva de la relación que mantienen con los profesionales desde los primeros momentos del diagnóstico, en relación con la comunicación de la discapacidad de sus hijos y la información y orientación inicial que recibieron. Una mayor edad de la madre, una situación económica más frágil, afrontar la crianza sin el otro progenitor, el crecimiento de los hijos, y la no disposición de redes familiares, amicales y profesionales, constituyen en las mujeres estudiadas factores de riesgo para el estrés maternal

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Referências

Abery, B. H. (2006). Family adjustment and adaptation with children with Down syndrome. Focus on Exceptional Children, 38 (5): 1-19.

Abidin, R. R. (1983). Parenting Stress Index Manual. Charlottesville, V. A.: Pediatric Psychology Press.

Abidin, R. R. (1992.) The determinants of parenting behaviour. Journal of Clinical Child Psychology, 21 (4): 407-412.

Abidin, R. R. (1995). Parenting Stres Index (PSI) manual. Charlottesville, VA: Pediatric Psychology Press.

Acero Rodríguez, P. D. (2013). Discapacidad: cómo afrontar el duelo en la familia. Madrid: San Pablo.

Aldosari, M. S. y Pufpaff, L. A. (2014). Sources of stress among parents of children with intellectual disabilities: a preliminary investigation in Saudi Arabia. The Journal of special eduction Apprenticeship, 3 (1): 1-21.

Antonovsky, A. (1987). Unraveling the Miystery of Health: How People Manage Stress and Stay Well. San Francisco, CA.: Jossey-Bass Publishers.

Azar, M., y Badr, L. K. (2010). Predictors of coping in parents of children with an intellectual disability: Comparison between lebanese mothers and fathers. Journal of Pediatric Nursing, 25 (1): 46-56.

Azar, M. y Kurdahi, L. (2006). The adaptation of mothers of children with intellectual disability in Lebanon. Journal of Transcultural Nursing, 17 (4):375-380.

Baker-Ericzén, M. J. et al. (2005) Stress levels and adaptability in parents of toddlers with and without autism spectrum disorders. Research and practice for prsons with severe disabilities, 30 (4): 194-204.

Basa, J. A. (2010) Estrés parental con hijos autistas. Un estudio comparativo. Tesis de Licenciatura, Universidad Católica Argentina, Facultad de Humanidades “Teresa de Ávila”, Argentina. Recuperado en marzo de 2014: http://bibliotecadigital.uca.edu.ar/repositorio/tesis/estres-parental-con-hijos-autistas.pdf.

Blacher, J. et al. (2013). Syndrome specificity and mother-child interactions: Examining positive and negative parenting across contexts and time. Journal of Autism and Developmental Disorders, 43: 761–774.

Bower, A., Chant, D., & Chatwin, S. (1998).

Hardiness in families with and without a child with Down syndrome. Down Syndrome Research and Practice, 5 (2): 71-77.

Byrne, E. A. & Cunningham, C. C. (1985). The effects of mentally handicapped children on families: A conceptual review. Journal of Child Psychology and Psychiatry and Allied Disciplines, 26 (6): 847- 864.

Canbulat, N., et al. (2014). Emotional reactions of mothers diagnosed with Down syndrome baby. International Journal of Nursing Knowledge, 25 (3): 147-153.

Cea D´Ancona, M. A. (1999). Metodología cuantitativa. Estrategias y técnicas de investigación social. Madrid: Síntesis.

Chichevska Jovanova, N. y Dimitrova Radojichikj, D. (2013) Parents of children with developmental disabilities: stress and support. Special Education-Profesional and Scientific Issues, 14 (1-2): 7-19.

Choi, E.K., et al.. (2011). Factors associated with emotional response of parents at the time of diagnosis of Down syndrome. Journal for Specialists in Pediatric Nursing, 16: 113-120.

Cooke, K., et al. (1986). Child disablement, family dissolution and reconstitution. Developmental Medicine and Child Neurology, 28: 610–16.

Corbetta, P. (2007). Metodología y técnicas de investigación social. Madrid: McGraw Hill.

Cunningham, C. C. (1996). Families of children with Down syndrome. Down Syndrome Research and Practice, 4 (3): 87-95.

Cunningham, C. (2011). El síndrome de Down. Una introducción para padres. Barcelona: Paidós.

Dabrowska, A. y Pisula, E. (2010). Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome. Journal of Intellectual Disability Research, 54(3): 266-280.

Di Giulio, P. et al. (2014). Families with disabled children in different european countries. Families and societies, 23. Recuperado en abril de 2015: http://www.familiesandsocieties.eu/wp-content/uploads/2014/12/WP23GiulioEtAl.pdf

Díaz-Herrero, A., et al. (2010). Estructura factorial y consistencia interna de la versión española del Parenting Stress Index-Short Form. Psicothema, 22 (4): 1033-1038.

Díaz-Herrero, A., et al. (2011). Validity of the Parenting Stress Index-Short Form in a sample of spanish fathers. The Spanish Journal of Psychology, 14 (2): 990-997.

Dubbs, J. L. (2008). Parent stress reduction through a psychosocial intervention for children diagnosed with attention-deficit/hiperactivity disoreder. A Dissertation Submitted to the School of Graduate Studies and Research In Partial Fulfillment of the Reuirements for the Degree Doctor of Psychology. Indiana University of Pennsylvania. Recuperado en abril de 2014https://dspace.iup.edu/bitstream/handle/2069/75/Jenna%20Dubbs.pdf?sequence=1

Dyson, L .L. (1991). Families of young children with handicaps: Parental stress and family functioning. American Journal on Mental Retardation, 95: 623–629.

Dyson, L. L. (1997) Fathers and mothers of school-age children with developmental disabilities: parental stress, family functioning, and social support. American Journal on Mental Retardation, 102: 267-279.

Emerson, E. (2003). Mothers of children and adolescents with intellectual disability: social and economic situation, mental health status, and the self-assessed social and psychological impact of the child’s difficulties. Journal of Intellectual Disability Research, 47: 385–399.

FEAPS (2008). Necesidades de las Familias de Personas con Discapacidad Intelectual de Feaps Madrid. Madrid: FEAPS.

Flórez, J. (2000). A la vera de nuestros caminos. Evocaciones sobre la discapacidad. Santander: Fundación Síndrome de Down Cantabria.

Friedrich, W. N. y Friedrich, W. L. (1981). Psychosocial assets of parents of handicapped and nonhandicapped children. American Journal of Mental Deficiency, 85(5): 551-553.

GAT (2011). La Primera Noticia. Madrid, Polibea.

Gath, A. (1978). Down’s Syndrome and the family: he early years. London: Academic Press.

Glidden, L. M., y Floyd, F. J. (1997). Disaggregatin parental depression and family stressin assessing families of children with developmental disabilities: a multisample aalysis. American Journal on Mental Retardation, 102: 250-266.

Gray, D. E. (2003). Gender and coping: The parents of children with high functioning autism. Social Science and Medicine, 56: 631-642.

Green, S. E. (2002). Mothering Amanda: Musing on the experience of raising a child with cerebral palsy. Journal of Loss and Trauma, 7: 21-34.

Gupta, R. K. y Kaur, H. (2010). Stress among parents of children with intellectual disability. Asia Pacific Disability Rehabilitation Journal, 21(2): 118-126.

Hassall, R., Rose, J., y McDonald, J. (2005). Parenting stress in mothers of children with an intellectual disability: the effects of parental cognitions in relation to child characteristics and family support. Journal of Intellectual Disability Research, 49 (6): 405-418.

Hastings, R. (2002). Parental stress and behavior problems of children with developmental disabilities. Journal of Intellectual & Developmental disability, 2: 149-160.

Hastings, R. P., et al.. (2002). Factors related to positive perceptions in parents of children with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 15 (3), 269–275.

Hastings, R. P., et al. (2006). Maternal distress and expressed emotion: cross-sectional and longitudinal relationships with behavior problems of children with intelectual disabilities. American Journal on Mental Retardation, 11: 48- 61.

Hastings, R. P. et al. (2005). Coping strategies in mothers and fathers of preschool and school-age children with autism. Autism, 9 (4): 377-391.

Hedov, G., et al.. (2000). Self-perceived health in Swedish parents of children with Down’s syndrome. Quality of Life Research, 9 (4): 415-422.

Hedov, G.; et al. (2002) First information and support provided to parents of children with Down syndrome in Sweden: clinical goals and parental experiences. Acta Paediatr, 91: 1344-1349.

Hodapp, R. M. (2007). Families of persons with Down syndrome: new perspectives, findings, and research and service needs. Mental Retardation and Developmental Disabilities Research Reviews 13: 279 – 287.

Hodapp, R. M., et al. (2003). The effects of the child with Down syndrome on maternal stress. British Journal of Developmental Psychology, 22: 137–151.

Hogan, D., et al. (2012). Family consequences of children’s disabilities. Russell: Sage Foundation.

Johnston, C., et al. (2003). Factors associated with parentign stress in mothers of children with fragile X syndrome. Journal of Developmental and Behavioral Pediatrics, 24 (4): 267-275.

Keller, D., y Honig, A. S. (2004). Maternal and paternal stress in families with school-aged children with disabilities. American Journal of Orthopsychiatry, 74 (3): 337-348.

Kearney, P. M., y Griffin, T. (2001).

Between joy and sorrow: Being a parent of a child with developmental disability. Journal of Advanced Nursing, 34: 582-592.

Kersh, J. et al. (2006). The contribution of marital quality to the wellbeing of parents of children with developmental disabilities. Journal of Intellectual Disability Research, 50 (12): 883-893.

Lalvani, P. (2008). Mothers of children with Down syndrome: Constructing the sociocultural meaning of disability. Intellectual and Developmental Disabilities, 46 (6), 436-445.

Lalvani, P. (2011). Constructing the (m)other. Dominant and contested narratives on mothering a child with Down syndrome. Narrative Inquiry, 21 (2): 276-293.

Loft, L. T. G. (2013). Four Essays on Family Life Events. Recuperado en mayo de 2014: http://www.soc.ku.dk/Forskning/dokument/thesis/FraForlag06_12_13.pdf.

Lott, I. T. y Dierssen, M. (2010). Cognitive deficits and associated neurological complications in individual with Down´s syndrome. Lancet Neurology, 9: 623-633.

Mak, W. S. y Ho, S. M. (2007) Caregiving perceptions of Chinese mothers of children with intellecutal disability in Hong Kong. Journal of Applied Research in Intellecutal Disabilities, 20: 145-456.

Manjarrés Carrizales, D. (2012). Apoyo y fortalecimiento a familias para la crianza de niños con discapacidad. Horizontes Pedagógicos, 14 (1): 97-118.

Martínez-Pampliega, A., et al. (2006). Family Adaptability and Cohesion Evaluation Scale (FACES): desarrollo de una versión de 20 items en español. International Journal of Clinical and Health Psychology, 6 (2): 317-338

McCubbin, H. I. y Patterson, J. M. (1983). The family stress process: the double ABCX model of adjustment and adaptation. Marriage and Family Review, 6: 7-37

McCubbin, M. A., y McCubbin, H. I. (1993). Families coping with illness: The resiliency model of family stress, adjustment and adaptation. En Danielson, C. B., Hamel-Bissell, B. & Winstead-Fry, P. Families, Health and Illness (pp. 21-63) St. Louis, MO: CV Mosby.

Mercado García, E. y García Vicente, L. M. (2010). Necesidades sociales de las personas con discapacidad en edad escolar y sus familias. Cuadernos de Trabajo Social, 23: 9-24.

Minnes P. M. (1988) Family resources and stress associated with having a mentally retarded child. American Journal on Mental Retardation 93: 184- 92.

Minnes, P. (1998). Mental retardation: the impact upon the family. En Burack, J. A., Hodapp, R. M., & Zigler, E. (Coord.), Handbook of mental retardation and development (pp. 693-712). Cambridge: Cambridge University Press.

Neely-Barnes, S. L. y Dia, D. A. (2008). Families of children with disabilities: a review of literature and recommendations for interventions. Journal of Early and Intensive Behavior intervencion, 5 (3): 93- 107.

Negrin, N. S. y Cristante, F. (1996). Resources and stress in parents with a mentally retarded child: a quantitative approach. En Cusinato, M. (Coord.). Research on family: resources and needs across the world (pp. 493-506). Milão: LED – Edicioni Universitarie.

Núñez, B. (2010). El niño con discapacidad, la familia y su docente. Buenos Aires: Lugar.

Oelofsen, N. y Phil Richardson, P. (2006) Sense of coherence and parenting stress in mothers and fathers of preschool children with developmental disability. Journal of Intellectual and Developmental Disability, 31 (1): 1-12.

Olsson, M. B. y Hwang, C. P. (2001). Depression in mothers and fathers of children with intellectual disability. Journal of intellectual Disability Research, 45 (6): 535- 543.

Ortega, P., Salguero, A., y Garrido Garduño, A. (2007). Discapacidad: paternidad y cambios familiars. Avances en Psicología Latinoamericana/Bogotá (Colombia), 25 (1): 118-125.

Padeliadu, S. (1998). Time demands and experience stress in greek mothers of children with Down´s syndrome. Journal of Intellectualy Disability, 42 (2): 144-153.

Phelps, R. A. et al. (2012) Health care needs of children with Down syndrome and impact of health system performance on children and their families. Journal of Developmental and Behavioral Pediatrics, 33: 214-220.

Pereira Silva, N. L. y Dessen, M. A. (2003). Cianças preescolares com sindrome de Down e suas interaçones familiares. Psicologia: Reflexao e critica, 16 (3): 503-514.

Pereira Silva, N. L. (2006). Familias de crianças com síndrome de Down: sentimentos, modos de vida e estresse parental. Interaçao em Psicología, 10 (2): 183-194

Pozo Cabanillas, P., Sarriá Sánchez, E., & Méndez Zaballos, L. (2006). Estrés en madres de personas con trastornos del espectro autista. Psicothema, 18 (3): 342-347

Rasheed, J. M., Rasheed, M. N., y Marley, J. A. (2001). Family therapy. Models and tecniques. London: Sage.

Robledo, J. V. (2011). Construir un nuevo proyecto de vida familiar: la irrupción de un hijo con discapacidad y el impacto de su diagnóstico. Tesina. Universidad Nacional del Rosario.

Rodrigues Nunes, M. D., y Dupas, G. (2011). Independence of children with Down syndrome: the experiences of families. Revista Latino-Americana de Enfermagem, 19 (4): 985-993.

Rogers, M. L. y Hogan, D. P. (2003) Family life with children with disabilities: the key role of rehabilitation. Journal of Marriage and Family, 65: 818–833.

Ruano Piera, R. y Serra Desfilis, E. (2000). Estrategias de afrontamiento en familias con hijos adolescentes. Anales de Psicología, 16 (2): 199-206.

Sanders, J. L. y Morgan, S. B. (1997) Family stress and adjustment as perceived by parents of children with autism or Down Syndrome: Implications for Intervention. Child and Family Behavior Therapy, 19: 15-32.

Sanz Vázquez, M. (2008). Equipo EIF. Manual de Instrumentos de evaluación familiar. (pp. 69- 77).Madrid: CCS.

Sayed, M. et al. (2006). Parenting Stress Index among Mothers of Conduct Disorder Children. Current Psychiatry, 13 (2): 255-270.

Scorgie, K. y Sobsey, D. (2000). Transformational outcomes associated with parenting children who have disabilities. Mental Retardation, 38 (3): 195-206.

Scott, B. S. et al. (1997). Psychological distress of parents of infants with Down syndrome. American Journal on Mental Retardation, 102 (2): 161-171.

Shapiro, J. et al. (1998). Maternal reactions to children with mental retardation. En Burack, J. A., Hodapp R. M. & Zigler E. (Coord.). Handbook of mental retardation and development (pp. 606-636). Cambridge: Cambridge University Press.

Shin, J. et al. (2006). Parenting Stress of mothers and fathers of young children with cognitive delays in Vietnam. Journal of Intellectual Disability Research, 50: 748-760.

Shonkoff, J. P. et al. (1992). Development of infants with disabilities and their families: Implications for theory and service delivery. Monogrphs of the Society ofr Research in Child Development, 57 (6, Serial No. 230).

Silva, N. L. P. y Dessen, M. A. (2003). Ciranças com síndrome de Down e suas interaçoes familiares. Psicología: R

eflexao e Crítica, 16(3): 503-514.

Simmerman, S. et al. (2001). Fathers’ and mothers’ perceptions of father involvement in families with Young children with a disability. Journal of Intellectual and Developmental Disability, 26: 325-338.

Singer, G. (2006). Meta-analysis of comparative studies of depression in mothers of children with and without developmental disabilities. American Journal on Mental Retardation, 111 (3): 155-169.

Skotko, B. G. (2005) Mothers of children with Down syndrome reflect on their postnatal support. Pediatrics, 115: 64–77.

Skotko, B. y Bedia, R. C. (2004). Apoyo postnatal para madres de niños con síndrome de Down. Revista Síndrome de Down, 21: 54-71.

Skotko, B. et al. (2005) Postnatal support for mothers of children with Down syndrome. Mental Retardation, 43 (3): 196-212.

Tomanik, S. et al. (2004). The relationship between behaviors exhibited by children with autism and maternal distress. Journal of Intellectual & Developmental Disability, 29 (1): 16–26.

Torres, L. y Maia, C. (2009). Percepción de las madres acerca del contenido de la información del diagnostico de síndrome de Down. Revista Chilena de Pediatría, 80 (1): 39-47.

Webster, T. I. et al. (2008). Child health and parental stress in school-age children with a preschool diagnosis of developmental delay. Journal of Child Neurology, 23 (1): 32-38.

Publicado

2018-04-03

Como Citar

GUZMÁN, E. M. R.; LÓPEZ, R. M. EL ESTRÉS DE LAS MADRES CON HIJOS/AS CON SÍNDROME DE DOWN: ANÁLISIS DESCRIPTIVO DE UNA MUESTRA ESPAÑOLA. Gênero & Direito, [S. l.], v. 7, n. 1, 2018. DOI: 10.22478/ufpb.2179-7137.2018v7n1.38976. Disponível em: https://periodicos.ufpb.br/ojs/index.php/ged/article/view/38976. Acesso em: 27 out. 2021.

Edição

Seção

Saúde, Gênero e Direito