TRANSTORNO DO ESPETRO DO AUTISMO – PREOCUPAÇÕES E APOIOS DE FAMÍLIAS

Autores

  • Lúcia Silva Magalhães Instituto de Educação, Universidade do Minho
  • Ana Silva Paula Pereira Instituto de Educação, Universidade do Minho

Resumo

As famílias de crianças com Transtorno do Espetro do Autismo enfrentam uma série de desafios no dia-a-dia, de onde emerge um conjunto vasto de preocupações inerentes aos cuidados e vivência com uma criança com este transtorno. As características associadas a este transtorno e o respetivo impacto no funcionamento e dinâmica familiar originam a procura e mobilização de apoios indispensáveis à criança e às famílias. O presente artigo tem como objetivo analisar e compreender as principais preocupações sentidas pelas famílias com crianças com Transtorno do Espectro do Autismo, bem como o tipo de apoio formal e informal necessário na resposta a essas preocupações. Neste sentido foi utilizada uma metodologia de pesquisa bibliográfica realizada nos períodos de 2006 a 2016, em bases de dados internacionais, como Web of Science e Academic Search Complete. A conclusão desta pesquisa permite-nos compreender que estas famílias experimentam altos níveis de stress, que podem ser causados por uma diversidade de preocupações associadas ao processo de diagnóstico; preocupações económicas; preocupações em relação ao tipo, qualidade e eficácia dos serviços e recursos disponíveis.

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Referências

AL JABERY, M. A.; ARABIAT, D. H.; AL KHARMA, H. A. et al. Parental perceptions of services provided for children with autism in Jordan. Journal of Child and Family Studies, United States of America, v. 23, n. 3, p. 475-486, 2014.

ALTIERE, M.; VON KLUGE, S. Family functioning and coping behaviour in parents of children with autism. Journal of Child and Family Studies, United States of America, v. 18, n. 1, p. 83-92, 2008.

ALTIERE, M. J.; VON KLUGE, S. Searching for acceptance: Challenges encountered while raising a child with autism. Journal of Intellectual & Developmental Disability, Australia. 34, n. 2, p. 142-152, 2009.

ANDERSON, L. L.; LARSON, S. A.; WUORIO, A. (Orgs.). 2010 FINDS National Survey Technical Report Part 1: Family Caregiver Survey. Minneapolis: University of Minnesota, Research and Training Center on Community Living, 2011.

BAILEY, D. B.; NELSON, L.; HEBBELER, K. et al. Modeling the impact of formal and informal supports for young children with disabilities and their families. Pediatrics, v. 120, n. 4, p. 992-1001, 2007.

BANACH, M.; IUDICE, J.; CONWAY, L. et al. Family support and empowerment: Post autism diagnosis support group for parents. Social Work With Groups, London, v. 33, n. 1, p. 69-83, 2010.

BLOCH, J. S.; WEINSTEIN, J. D. Families of young children with autism. Social Work in Mental Health, Cambridge, v. 8, p. 23-40, 2009.

BULTAS, M. W. The health care experiences of the preschool child with autism. Journal of Pediatric Nursing, Philadelphia, v. 27, p. 460-470, 2012.

CAPPE, E.; WOLFF, M.; BOBET, R. et al. 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, London, v. 20, p. 1279-1294, 2011.

CEZAR, P. K.; SMEHA, L. N. Repercussões do autismo no subsistema fraterno na perspectiva de irmãos adultos. Estudos de Psicologia, Campinas, v. 33, n.1, p. 51-60, 2016.

CHIRI, G.; WARFIELD, M. E. Unmet need and problems accessing core health care services for children with autism spectrum disorder. Maternal and Child Health Journal, USA, v. 16, n. 5, p. 1081-1091, 2012.

DILLENBURGER, K.; KEENAN, M.; DOHERTY, A. et al. Living with children diagnosed with autistic spectrum disorder: parental and professional. British Journal of Special Education, London, v. 37, n. 1, p. 13-23, 2010.

DUNST, C. J.; TRIVETTE, C. M.; HAMBY, D. W. Meta-analysis of family-centered helpgiving practices research. Mental Retardation and Developmental Disabilities Research Reviews, New York, v. 13, n. 4, p. 370-378, 2007.

EKAS, N. M.; LICKENBROCK, D. M.; WHITMAN, T. L. Optimism, social support, and well-being in mothers of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, USA, v. 40, n. 10, p. 1274-1284, 2010.

GREEN, L. The well-being of siblings of individuals with autism. International Scholarly Research Notices, v. 2013, p.1-7, 2013.

HALL, H. R. Families of children with autism: Behaviors of children, community support and coping. Issues in Comprehensive Pediatric Nursing, USA, v. 35, n. 2, p. 111-132, 2012.

HALL, H. R.; GRAFF, J. C. The relationships among adaptive behaviors of children with autism, family support, parenting stress, and coping. Issues in Comprehensive Pediatric Nursing, USA, v. 34, n. 1, p. 4-25, 2011.

HARPER, A.; DYCHES, T. T.; HARPER, J. et al. Respite care, marital quality, and stress in parents of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, USA, v. 43, p. 2604-2616, 2013.

HILL, N.; TAYLOR, L. Parental school involvement and children's academic achievement. Current Directions in Psychological Science, USA, v. 13, n. 4, p. 161-164, 2016.

HOFFMAN, C. D.; SWEENEY, D. P.; HODGE, D. et al. Parenting stress and closeness: Mothers of typically developing children and mothers of children with autism. Focus on Autism and Other Developmental Disabilities, Florida, v. 24, n. 3, p. 178-187, 2009.

HOOGSTEEN, L.; WOODGATE, R. L. Centering autism within the family: a qualitative approach to autism and the family. Journal of Pediatric Nursing, Philadelphia, v. 28, p. 135-140, 2013.

KARST, J. S.; VAN HECKE, A. M. Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, USA, v. 15, p. 247-277, 2012.

KOGAN, M. D.; STRICKLAND, B. B.; BLUMBERG, S. J. et al. A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005-2006. Pediatrics, London, v. 122, n. 6, p. 1149-1158, 2008.

KUHANECK, H. M.; BURROUGHS, T.; WRIGHT, J. et al. A qualitative study of coping in mothers of children with an autism spectrum disorder. Physical & Occupational Therapy in Pediatrics, London, v. 30, n. 4, p. 340-350, 2010.

LAMPREIA, C. A perspectiva desenvolvimentalista para a intervenção precoce no autismo. Estudos de Psicologia, Campinas, v. 24, n. 1, p. 105-114, 2007.

LEE, L. C.; HARRINGTON, R. B.; LOUIE, B. B. et al. Children with autism: Quality of life and parental concerns. Journal of Autism and Development Disorders, USA, v. 38, p. 1147-1160, 2008.

LUTZ, H. R.; PATTERSON, B. J.; KLEIN, J. Coping with autism: A journey toward adaptation. Journal of Pediatric Nursing, Philadelphia; v. 27, p. 206-213, 2012.

MCCONKEY, R.; KELLY, G.; CASSIDY, A. An evaluation of the need and early intervention support for children (aged 2-4 years) with an autistic spectrum disorder in Northern Ireland (n. 44). Belfast, NI: Department of Education, 2007.

MINNES, P.; STEINER, K. Parent views on enhancing the quality of health care for their children with fragile X syndrome, autism or Down syndrome. Child: Care, Health and Development, London, v. 35, n. 2, p. 250-256, 2009.

NEALY, C. E.; O’HARE, L.; POWERS, J. D. et al. The impact of autism spectrum disorders on the family: a qualitative study of mothers’ perspectives. Journal of Family Social Work, USA, v. 15, n. 3, p. 187-201, 2012.

OSBORNE, L. A.; REED, P. Stress and self-perceived parenting behaviors of parents of children with autistic spectrum conditions. Research in Autism Spectrum Disorders, London, v. 4, p. 405-414, 2010.

PAPAGEORGIOU, V.; KALYVA, E. Self-reported needs and expectations of parents of children with autism spectrum disorders who participate in support groups. Research in Autism Spectrum Disorders, London, v. 4, p. 653-660, 2010.

REIS, H. I. S.; PEREIRA, A. P. S.; ALMEIDA, L. A intervención precoz nas perturbacións do espectro do autismo en Portugal. Maremagnum, Galiza, Espanha, v. 18, p. 47-56, 2014.

RENTY, J.; ROEYERS, H. Satisfaction with formal support and education for children with autism Spectrum disorder: The voices of the parents. Child: Care, Health & Development, London, v. 32, n. 3, p. 371-382, 2006.

RUSSA, M. B.; MATTHEWS, A. L.; OWEN-DE SCHRYVER, J. S. Expanding supports to improve the lives of families of children with autism spectrum disorder. Journal of Positive Behavior Interventions, USA, v. 17, n. 2, p. 95-104, 2015.

SEMENSATO, M. R.; BOSA, C. A. Relatos de pais de crianças com autismo sobre a rede de apoio formal: aspectos da elaboração parental do diagnóstico. Revista Educação Especial, Rio Grande do Sul, v. 26, n. 47, p. 651-664, 2013.

SIKLOS, S.; KERNS, K. A. Assessing need for social support in parents of children with autism and down syndrome. Journal of Autism and Developmental Disorders, USA, v. 36, p. 921-933, 2006.

______. Assessing the diagnostic experiences of a small sample of parents of children with autism spectrum disorders. Research in Developmental Disabilities, London, v. 28, n. 1, p. 9-22, 2007.

THOMAS, B. et al. Promising Partnership Practices. Baltimore, Maryland: Johns Hopkins University, 2016.

TWOY, R.; CONNOLLY, P. M.; NOVAK, J. M. Coping strategies used by parents of children with autism. Journal of the American Academy of Nurse Practitioners, USA, v. 19, n. 5, p. 251-260, 2007.

VARGAS, R.; SCHMIDT, C. Envolvimento parental e a inclusão de alunos com autismo. Acta Scientiarum, Maringá, v. 39, n. 2, p. 207-214, 2017.

ZAIDMAN-ZAIT, A.; JAMIESON, J. R. Providing web-based support for families of infants and young children with established disabilities. Infants & Young Children, USA, v. 20, n. 1, p. 11-25, 2007.

ZWAIGENBAUM, L.; BRYSON, S.; GARON, N. Early identification of autism spectrum disorders. Behavioural Brain Research, USA, v. 25, p. 133-146, 2013.

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Publicado

30-06-2017

Como Citar

Magalhães, L. S., & Pereira, A. S. P. (2017). TRANSTORNO DO ESPETRO DO AUTISMO – PREOCUPAÇÕES E APOIOS DE FAMÍLIAS. Revista Educação Especial Em Debate, (3), 29–43. Recuperado de https://periodicos.ufes.br/reed/article/view/17823