Itinerário terapêutico percorrido por familiares de crianças com transtorno do espectro autista - TEA

Detalhes bibliográficos
Ano de defesa: 2023
Autor(a) principal: LIMA, Nádia Alexandrina Coutinho
Orientador(a): COSTA, Maria Suely Alves
Banca de defesa: Não Informado pela instituição
Tipo de documento: Dissertação
Tipo de acesso: Acesso aberto
Idioma: por
Instituição de defesa: Não Informado pela instituição
Programa de Pós-Graduação: Não Informado pela instituição
Departamento: Não Informado pela instituição
País: Não Informado pela instituição
Link de acesso: http://repositorio.ufc.br/handle/riufc/75927
Resumo: Autism spectrum disorder (ASD) is a developmental disorder that can be recognized by deficits in social communication and social interaction; expressive deficits in verbal and non-verbal communication; restricted and repetitive patterns of behavior, interests and activity. Despite the existence of public policies aimed at the care of people with autism, the trajectory of these people and their families does not seem to coincide with the flowcharts proposed by the national guidelines for care for this population. In view of the above, this research aims to understand the path taken by parents or guardians of children with autism spectrum disorder in the health network in the city of Crateús-CE, from the identification of the first signs to the diagnosis and access to therapeutic interventions, from the perspective of their family members. The aim is to characterize the actors involved with sociodemographic indicators, identify the support network variables attributed by parents or guardians of children with ASD and identify the support network care points mentioned by parents or guardians of children with ASD. Method: This is a descriptive study, with a qualitative approach, using the cartographic method and the use of an Affective Map generating instrument to collect data, through focus groups, using a semi- structured interview. Eight family members of children with autism spectrum disorder - ASD in the municipality of Crateús – Ce, who are part of the Association of Mothers of Autistics of Crateús - AMAC, participated in the research. The interviews and groups were analyzed using discourse analysis, organized into categories and subcategories. Results: The therapeutic itinerary is characterized by the identification of the first signs and therapeutic intervention before the diagnosis, the search for the diagnosis that was seen to face many barriers, including access to rehabilitation services and the diagnosis that comes loaded with feelings and demands of family changes. Final considerations: The study revealed that despite the existence of public policies aimed at caring for people with ASD and their families, there is still a gap between the guidelines for health practices and the actual practices. There is fragility in access to health services, leading families to seek support from health plans and little pressure and activism for their rights.
id UFC-7_6f8af6288c9ecc978b7cb346019c958e
oai_identifier_str oai:repositorio.ufc.br:riufc/75927
network_acronym_str UFC-7
network_name_str Repositório Institucional da Universidade Federal do Ceará (UFC)
repository_id_str
spelling LIMA, Nádia Alexandrina CoutinhoCOSTA, Maria Suely Alves2024-01-22T13:43:00Z2024-01-22T13:43:00Z2023http://repositorio.ufc.br/handle/riufc/75927Autism spectrum disorder (ASD) is a developmental disorder that can be recognized by deficits in social communication and social interaction; expressive deficits in verbal and non-verbal communication; restricted and repetitive patterns of behavior, interests and activity. Despite the existence of public policies aimed at the care of people with autism, the trajectory of these people and their families does not seem to coincide with the flowcharts proposed by the national guidelines for care for this population. In view of the above, this research aims to understand the path taken by parents or guardians of children with autism spectrum disorder in the health network in the city of Crateús-CE, from the identification of the first signs to the diagnosis and access to therapeutic interventions, from the perspective of their family members. The aim is to characterize the actors involved with sociodemographic indicators, identify the support network variables attributed by parents or guardians of children with ASD and identify the support network care points mentioned by parents or guardians of children with ASD. Method: This is a descriptive study, with a qualitative approach, using the cartographic method and the use of an Affective Map generating instrument to collect data, through focus groups, using a semi- structured interview. Eight family members of children with autism spectrum disorder - ASD in the municipality of Crateús – Ce, who are part of the Association of Mothers of Autistics of Crateús - AMAC, participated in the research. The interviews and groups were analyzed using discourse analysis, organized into categories and subcategories. Results: The therapeutic itinerary is characterized by the identification of the first signs and therapeutic intervention before the diagnosis, the search for the diagnosis that was seen to face many barriers, including access to rehabilitation services and the diagnosis that comes loaded with feelings and demands of family changes. Final considerations: The study revealed that despite the existence of public policies aimed at caring for people with ASD and their families, there is still a gap between the guidelines for health practices and the actual practices. There is fragility in access to health services, leading families to seek support from health plans and little pressure and activism for their rights.O transtorno do espectro autista (TEA) é um transtorno do desenvolvimento que pode ser reconhecido por déficits na comunicação social e na interação social; déficits expressivos na comunicação verbal e não verbal; padrões restritos e repetitivos de comportamento, interesses e atividade. Apesar da existência de políticas públicas voltadas à atenção de pessoas com autismo, a trajetória dessas pessoas e de seus familiares parece não coincidir com os fluxogramas propostos pelas diretrizes nacionais de atenção a esta população. Diante do exposto, essa pesquisa tem como objetivo compreender o percurso percorrido por pais ou responsáveis de crianças com TEA na rede de saúde no município de Crateús-CE, desde a identificação dos primeiros sinais até a realização do diagnóstico e o acesso às intervenções terapêuticas, na perspectiva de seus familiares. Pretende-se caracterizar os atores envolvidos com indicadores sociodemográficos, identificar as variáveis da rede de apoio atribuídos pelos pais ou responsáveis de crianças com TEA e identificar os pontos de cuidado da rede de apoio citados pelos pais ou responsáveis de crianças com TEA. Método: Trata-se de um estudo descritivo, de abordagem qualitativa, sendo utilizado o método cartográfico e uso de instrumento gerador de Mapas Afetivo para coleta de dados, através de grupos focais, sendo utilizada uma entrevista semiestruturada. Participaram da pesquisa oito familiares de criança com TEA no município de Crateús – CE que fazem parte da Associação de Mães de Autistas de Crateús - AMAC. Os dados foram analisados por meio de análise de discurso e organizados em categorias e subcategorias. Resultados: O Itinerário terapêutico é caracterizado pela identificação dos primeiros sinais e a intervenção terapêutica antes do diagnóstico, foi visto que as famílias enfrentam muitas barreiras nessa busca, inclusive de acesso aos serviços de reabilitação e o diagnóstico que vem carregado de sentimentos e exigências de mudanças familiares. Considerações finais: O estudo revelou que apesar da existência de políticas públicas voltadas à atenção de pessoas com TEA e seus familiares, ainda há um distanciamento entre as diretrizes norteadoras das práticas em saúde e as práticas, de fato. Há fragilidade no acesso aos serviços de saúde, levando as famílias a buscar apoio nos planos de saúde e pouco tensionamento e ativismo por seus direitos.Este documento está disponível online com base na Portaria nº 348, de 08 de dezembro de 2022, disponível em: https://biblioteca.ufc.br/wp-content/uploads/2022/12/portaria348-2022.pdf, que autoriza a digitalização e a disponibilização no Repositório Institucional (RI) da coleção retrospectiva de TCC, dissertações e teses da UFC, sem o termo de anuência prévia dos autores. Em caso de trabalhos com pedidos de patente e/ou de embargo, cabe, exclusivamente, ao autor(a) solicitar a restrição de acesso ou retirada de seu trabalho do RI, mediante apresentação de documento comprobatório à Direção do Sistema de Bibliotecas.Itinerário terapêutico percorrido por familiares de crianças com transtorno do espectro autista - TEAinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/masterThesisTranstorno do espectro autistaautismoautism spectrum disorderautisminfo:eu-repo/semantics/openAccessporreponame:Repositório Institucional da Universidade Federal do Ceará (UFC)instname:Universidade Federal do Ceará (UFC)instacron:UFC0000-0001-6887-4837http://lattes.cnpq.br/97250688643303170000-0002-3545-0613http://lattes.cnpq.br/21855760540400942023LICENSElicense.txtlicense.txttext/plain; charset=utf-81748http://repositorio.ufc.br/bitstream/riufc/75927/2/license.txt8a4605be74aa9ea9d79846c1fba20a33MD52ORIGINAL2023_dis_naclima.pdf2023_dis_naclima.pdfapplication/pdf498213http://repositorio.ufc.br/bitstream/riufc/75927/1/2023_dis_naclima.pdf837dcb5471e248812fc8f05a5e3db43dMD51riufc/759272024-01-22 10:43:01.073oai:repositorio.ufc.br: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Repositório InstitucionalPUBhttp://www.repositorio.ufc.br/ri-oai/requestbu@ufc.br || repositorio@ufc.bropendoar:2024-01-22T13:43:01Repositório Institucional da Universidade Federal do Ceará (UFC) - Universidade Federal do Ceará (UFC)false
dc.title.pt_BR.fl_str_mv Itinerário terapêutico percorrido por familiares de crianças com transtorno do espectro autista - TEA
title Itinerário terapêutico percorrido por familiares de crianças com transtorno do espectro autista - TEA
spellingShingle Itinerário terapêutico percorrido por familiares de crianças com transtorno do espectro autista - TEA
LIMA, Nádia Alexandrina Coutinho
Transtorno do espectro autista
autismo
autism spectrum disorder
autism
title_short Itinerário terapêutico percorrido por familiares de crianças com transtorno do espectro autista - TEA
title_full Itinerário terapêutico percorrido por familiares de crianças com transtorno do espectro autista - TEA
title_fullStr Itinerário terapêutico percorrido por familiares de crianças com transtorno do espectro autista - TEA
title_full_unstemmed Itinerário terapêutico percorrido por familiares de crianças com transtorno do espectro autista - TEA
title_sort Itinerário terapêutico percorrido por familiares de crianças com transtorno do espectro autista - TEA
author LIMA, Nádia Alexandrina Coutinho
author_facet LIMA, Nádia Alexandrina Coutinho
author_role author
dc.contributor.author.fl_str_mv LIMA, Nádia Alexandrina Coutinho
dc.contributor.advisor1.fl_str_mv COSTA, Maria Suely Alves
contributor_str_mv COSTA, Maria Suely Alves
dc.subject.ptbr.pt_BR.fl_str_mv Transtorno do espectro autista
autismo
topic Transtorno do espectro autista
autismo
autism spectrum disorder
autism
dc.subject.en.pt_BR.fl_str_mv autism spectrum disorder
autism
description Autism spectrum disorder (ASD) is a developmental disorder that can be recognized by deficits in social communication and social interaction; expressive deficits in verbal and non-verbal communication; restricted and repetitive patterns of behavior, interests and activity. Despite the existence of public policies aimed at the care of people with autism, the trajectory of these people and their families does not seem to coincide with the flowcharts proposed by the national guidelines for care for this population. In view of the above, this research aims to understand the path taken by parents or guardians of children with autism spectrum disorder in the health network in the city of Crateús-CE, from the identification of the first signs to the diagnosis and access to therapeutic interventions, from the perspective of their family members. The aim is to characterize the actors involved with sociodemographic indicators, identify the support network variables attributed by parents or guardians of children with ASD and identify the support network care points mentioned by parents or guardians of children with ASD. Method: This is a descriptive study, with a qualitative approach, using the cartographic method and the use of an Affective Map generating instrument to collect data, through focus groups, using a semi- structured interview. Eight family members of children with autism spectrum disorder - ASD in the municipality of Crateús – Ce, who are part of the Association of Mothers of Autistics of Crateús - AMAC, participated in the research. The interviews and groups were analyzed using discourse analysis, organized into categories and subcategories. Results: The therapeutic itinerary is characterized by the identification of the first signs and therapeutic intervention before the diagnosis, the search for the diagnosis that was seen to face many barriers, including access to rehabilitation services and the diagnosis that comes loaded with feelings and demands of family changes. Final considerations: The study revealed that despite the existence of public policies aimed at caring for people with ASD and their families, there is still a gap between the guidelines for health practices and the actual practices. There is fragility in access to health services, leading families to seek support from health plans and little pressure and activism for their rights.
publishDate 2023
dc.date.issued.fl_str_mv 2023
dc.date.accessioned.fl_str_mv 2024-01-22T13:43:00Z
dc.date.available.fl_str_mv 2024-01-22T13:43:00Z
dc.type.status.fl_str_mv info:eu-repo/semantics/publishedVersion
dc.type.driver.fl_str_mv info:eu-repo/semantics/masterThesis
format masterThesis
status_str publishedVersion
dc.identifier.uri.fl_str_mv http://repositorio.ufc.br/handle/riufc/75927
url http://repositorio.ufc.br/handle/riufc/75927
dc.language.iso.fl_str_mv por
language por
dc.rights.driver.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.source.none.fl_str_mv reponame:Repositório Institucional da Universidade Federal do Ceará (UFC)
instname:Universidade Federal do Ceará (UFC)
instacron:UFC
instname_str Universidade Federal do Ceará (UFC)
instacron_str UFC
institution UFC
reponame_str Repositório Institucional da Universidade Federal do Ceará (UFC)
collection Repositório Institucional da Universidade Federal do Ceará (UFC)
bitstream.url.fl_str_mv http://repositorio.ufc.br/bitstream/riufc/75927/2/license.txt
http://repositorio.ufc.br/bitstream/riufc/75927/1/2023_dis_naclima.pdf
bitstream.checksum.fl_str_mv 8a4605be74aa9ea9d79846c1fba20a33
837dcb5471e248812fc8f05a5e3db43d
bitstream.checksumAlgorithm.fl_str_mv MD5
MD5
repository.name.fl_str_mv Repositório Institucional da Universidade Federal do Ceará (UFC) - Universidade Federal do Ceará (UFC)
repository.mail.fl_str_mv bu@ufc.br || repositorio@ufc.br
_version_ 1847793371423178752