Coping, estresse parental e qualidade de vida dos principais cuidadores de pessoas com TEA
Contido principal do artigo
Resumo
El objetivo de este estudio ha sido analizar la calidad de vida de los cuidadores principales de personas con TEA. Para ello se contó con una muestra de 50 cuidadores de personas con TEA con edades comprendidas entre 2 y 35 años. Además de la calidad de vida, se evaluaron las estrategias de afrontamiento y el estrés parental. Los resultados mostraron que (1) el estrés parental, las estrategias de afrontamiento y la calidad de vida no se asocia significativamente con la etapa evolutiva de la persona con TEA; (2) la calidad de vida en los dominios psicológico, social y ambiental es peor en los cuidadores con niveles de estrés parental clínicamente significativos; y (3) la calidad de vida en el dominio psicológico es mejor entre quienes utilizan estrategias de afrontamiento más adaptativas, como el apoyo social o la reevaluación positiva. Por el contrario, la utilización de estrategias del tipo reacción agresiva, evitación emocional o dificultades de afrontamiento se relaciona con una peor calidad de vida en los dominios psicológico, social y ambiental.
Downloads
Detalles do artigo
Referências
Abbeduto, L., Seltzer, M. M., Shattuck, P., Krauss, M. W., Orsmond, G. y Murphy, M. M. (2004). Psychological well-being and coping in mothers of youths with autism, down syndrome, or fragile X syndrome. American Journal on Mental Retardation, 109(3), 237-254. http://dx.doi.org/10.1352/0895-8017(2004)1092.0.CO;2
Abidin, R. R. (1983). The Parenting Stress Index. Charlottesville, VA: Pediatric Psychology Press.
Allik, H., Larsson, J. y Smedje, H. (2006). Sleep patterns of school-age children with asperger syndrome or high-functioning autism. Journal of Autism and Develop-mental Disorders, 36(5), 585-595. http://dx.doi.org/10.1007/s10803-006-0099-9
Cabanillas, P. P., Sánchez, E. S., & Zaballos, L. M. (2006). Estrés en madres de personas con trastornos del espectro autista. Psicothema, 18(3), 342-347.
Cappe, E., Wolff, M., Bobet, R. y Adrien, J. -. (2011). Quality of life: A key variable to consider in the evaluation of adjustment in parents of children with autism spectrum disorders and in the development of relevant support and assistance programmes. Quality of Life Research, 20(8), 1279-1294.
Cappe, É, Bobet, R. y Adrien, J. (2009). Qualité de vie et processus d'adaptation des familles d'un enfant ayant un trouble autistique ou un syndrome d'asperger. La Psychiatrie De L'Enfant, 52(1), 201-246. http://dx.doi.org/10.3917/psye.521.0201
Carrobles, J. A., Remor, E. y Rodríguez-Alzamora, L. (2003). Afrontamiento, apoyo social percibido y distrés emocional en pacientes con infección por VIH. / relationshiop of coping and perceived social support to emotional distress in people living with HIV. Psicothema, 15(3), 420-426.
Chorot, P. y Sandín, B. (1993). Escala de Estrategias de Coping Revisado (EEC-R). Madrid: UNED.
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.
Dale, E., Jahoda, A., y Knott, F. (2006) Mothers’ attributions following their child’s diagnosis of autistic spectrum disorder. Exploring links with maternal levels of stress, depression and expectations about their child’s future. Autism, 10(5), 463-479.
Essex, E. L., Seltzer, M. M. y Krauss, M. W. (1999). Differences in coping effectiveness and well-being among aging mothers and fathers of adults with mental retardation. American Journal on Mental Retardation, 104(6), 545-563. http://dx.doi.org/10.1352/0895-8017 (1999)1042.0.CO;2
Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X. y Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism: The International Journal of Research and Practice, 13(4), 375-387.
Griswold, G. A., Evans, S., Spielman, L. y Fishman, B. (2005). Coping strategies of HIV patients with peripheral neuropathy. AIDS Care, 17(6), 711-720. http://dx.doi.org/10.1080/09540120412331336715
Hastings, R. P., Kovshoff, H., Brown, T., Ward, N. J., Espinosa, F. D. y Remington, B. (2005). Coping strategies in mothers and fathers of preschool and school-age children with autism. Autism, 9(4), 377-391. http://dx.doi.org/10.1177/1362361305056078
Hastings, R., Kovshoff, H., Ward, N., Espinosa, F., Brown, T., y Remington, B. (2005). Systems analysis of stress and positive perceptions in mothers and fathers of pre-school children with autism. Journal of Autism and Development Disorders. 35(5), 635-644.
Herring, S., Gray, K., Taffe, J., Tonge, B., Sweeney, D. y Einfeld, S. (2006). Behaviour and emotional problems in toddlers with pervasive developmental disorders and developmental delay: Associations with parental mental health and family functioning. Journal of Intellectual Disability Research: JIDR, 50, 874-882.
Lazarus, R. S. y Folkman, S. (Eds.). (1986). Estrés y procesos cognitivos. Barcelona: Martínez Roca.
Lee, L., Harrington, R. A., Louie, B. B. y Newschaffer, C. J. (2008). Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38(6), 1147-1160. http://dx.doi.org/10.1007/s10803-007-0491-0
Londoño, N. H., Henao-López, G. C., Puerta, I. C., Posada, S., Arango, D., & Aguirre-Acevedo, D. C. (2006). Propiedades psicométricas y validación de la escala de estrategias de coping modificada (EEC-M) en una muestra colombiana. Universitas Psychologica, 5(2), 327-350.
Lucas Carrasco, R. (1998). Versión española del WHOQOL. Madrid: Ergón.
Lyons, A., Leon, S., Roecker Phelps, C & Dunleav, A. (2010). The impact of child symptom severity on stress among parents of children with ASD: The Moderating Role of Coping Style. Journal of Child and Family Studies, 19, 516- 524.
Manning, M. M., Wainwright, L. y Bennett, J. (2011). The double ABCX model of adaptation in racially diverse families with a school-age child with autism. Journal of Autism and Developmental Disorders, 41(3), 320-331.
Mugno, D., Ruta, L., D'Arrigo, V. G. y Mazzone, L. (2007). Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health and Quality of Life Outcomes, 5, 22-22.
Oizumi, J. J. (1997). Assessing maternal functioning in families of children with autism Available from PsycINFO. (AAM9638492; 1997-95002-259).
Osborne, L. y Reed, P. (2009). The relationship between parenting stress and behavior problems of children with autistic spectrum disorders. Exceptional Children, 76(1), 54-73.
Pakenham, K. I., Samios, C. y Sofronoff, K. (2005). Adjustment in mothers of children with asperger syndrome. an application of the double ABCX model of family adjustment. Autism, 9(2), 191-212. http://dx.doi.org/10.1177/1362361305049033
Pisula, E. y Kossakowsk, Z. (2010) Sense of Coherence and Coping with Stress Among Mothers and Fathers of Children with Autism. Journal of Autism and Developmental Disorders, 40, 1485-1494.
Pottie, C. G. y Ingram, K. M. (2008). Daily stress, coping, and well-being in parents of children with autism: A multilevel modeling approach. Journal of Family Psychology, 22(6), 855-864. http://dx.doi.org/10.1037/a0013604
Schalock, R. L. (2004). The concept of quality of life: What we know and do not know. Journal of Intellectual Disability Research, 48(3), 203-216.
Seltzer, M. M., Krauss, M. W., Walsh, P. y Conliffe, C. (1995). Cross-national comparisons of ageing mothers of adults with intellectual disabilities. Journal of Intellectual Disability Research, 39(5), 408-418.
Siman-Tov, A. y Kaniel, S. (2011). Stress and personal resource as predictors of the adjustment of parents to autistic children: A multivariate model. Journal of Autism and Developmental Disorders, 41(7), 879-890.
Simarro-Vázquez, L. (2013). Calidad de vida y educación en personas con autismo. Madrid: Síntesis.
Smith, L. E., Seltzer, M. M., Tager-Flusberg, H., Greenberg, J. S. y Carter, A. S. (2008). A comparative analysis of well-being and coping among mothers of toddlers and mothers of adolescents with ASD. Journal of Autism and Developmental Disorders, 38(5), 876-889. http://dx.doi.org/10.1007/s10803-007-0461-6
Solís, M. L. y Abidin, R. R. (1991). The spanish version parenting stress index: A psychometric study. Journal of Clinical Child Psychology, 20(4), 372-378.
Wahl, A., Hanestad, B. R., Wiklund, I. y Moum, T. (1999). Coping and quality of life in patients with psoriasis. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care & Rehabilitation, 8(5), 427-433. http://dx.doi.org/10.1023/A:1008944108101
WHOQOL Group. (1995). The World Health Organization quality of life assessment (WHOQOL): Position paper from the World Health Organization. Social Science & Medicine, 41(10), 1403-1409. http://dx.doi.org/10.1016/0277-9536(95)00112-K