O cuidado integral à saúde de pessoas com síndrome de Down: uma análise no contexto da educação especial e da atenção primária à saúde

Detalhes bibliográficos
Autor(a) principal: Silva, Rosane Seeger da
Data de Publicação: 2020
Tipo de documento: Tese
Idioma: por
Título da fonte: Manancial - Repositório Digital da UFSM
Texto Completo: http://repositorio.ufsm.br/handle/1/21161
Resumo: People with Down Syndrome (DS) are living longer than expected, in view of technological advances, especially in the area of Health. However, this population is still considered vulnerable in its aging process. Reflecting on the relevance of comprehensive health care for people with DS from adolescence and seeking to provide subsidies for a broader care for these people, this study analyzed the perception of workers from Special Education Schools (EE) and Primary Care to Health (PHC), in the municipality of Santa Maria / RS, on the conceptualization, conditions and health needs of people with DS, as well as the educational and health care provided to such people. This is a documentary, exploratory and descriptive study, with a qualitative and quantitative approach, carried out with the registration forms of people with DS from adolescence and with workers from the public and philanthropic networks of Education and Health in the municipality, especially EE schools specializing in intellectual disabilities and PHC. For data collection, two techniques were employed: i) documentary research (active search in the registration forms of people with DS, prepared by workers in the mentioned areas, using an instrument previously prepared by the researchers inspired by the Rapid Multidimensional Assessment of the Elderly Person - AMRPI) and ii) application of a questionnaire to workers (part aimed at identifying workers - sex, age, level, degree and time of training, as well as time in institutional practice and another relevant to the concepts and practices with people with DS). Initially, the researcher contacted the heads of the institutions to gain access to the registration forms and schedule meetings with the workers. The meetings were held in the institutions themselves (in a reserved place), according to previous scheduling and availability of workers, lasting 15 to 20 minutes. Data collection took place from September 2018 to July 2019. The interviews were audio recorded and transcribed in full. The data subject to quantitative analysis were organized, tabulated and, afterwards, a descriptive analysis was performed. The qualitative data were treated according to the Collective Subject Discourse (CSD) technique, which consists of elaborating the collective discourse from individual discourses. The active search in the registration forms resulted in 70 people with DS (attended at EE schools and PHC) and the number of workers was 88, 31 from EE schools and 57 from PHC schools. Article 1 “SD: conceptions of workers from EE and APS” investigated the conceptions of workers from schools of EE and APS about the syndrome and people with DS. Article 2 “Living conditions and health needs of people with DS: a study from the institutions of Health and Education” analyzed the perception of workers about the living conditions and health needs of people with DS. The article 3 "Aging of people with DS: conception and performance of workers from EE and APS" was concerned with analyzing the conception and performance of workers from schools of EE and APS in the face of the aging of people with DS and the article 4 “The health and aging of people with DS: what PHC workers say” analyzed the PHC workers' understanding of health and the aging condition supported by AMRPI. It is believed that this study can be replicated in different realities in order to improve longitudinal care for people with DS, readjusting the planning of educational and health actions with this portion of the population that is also aging.
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spelling O cuidado integral à saúde de pessoas com síndrome de Down: uma análise no contexto da educação especial e da atenção primária à saúdeIntegral health care for people with Down syndrome: an analysis in the context of special education and primary health careSaúdeEducaçãoCuidado integralSíndrome de DownEducação especialAtenção primária à saúdeHealthEducationComprehensive careDown’s syndromeSpecial educationPrimary health careCNPQ::CIENCIAS DA SAUDE::FONOAUDIOLOGIAPeople with Down Syndrome (DS) are living longer than expected, in view of technological advances, especially in the area of Health. However, this population is still considered vulnerable in its aging process. Reflecting on the relevance of comprehensive health care for people with DS from adolescence and seeking to provide subsidies for a broader care for these people, this study analyzed the perception of workers from Special Education Schools (EE) and Primary Care to Health (PHC), in the municipality of Santa Maria / RS, on the conceptualization, conditions and health needs of people with DS, as well as the educational and health care provided to such people. This is a documentary, exploratory and descriptive study, with a qualitative and quantitative approach, carried out with the registration forms of people with DS from adolescence and with workers from the public and philanthropic networks of Education and Health in the municipality, especially EE schools specializing in intellectual disabilities and PHC. For data collection, two techniques were employed: i) documentary research (active search in the registration forms of people with DS, prepared by workers in the mentioned areas, using an instrument previously prepared by the researchers inspired by the Rapid Multidimensional Assessment of the Elderly Person - AMRPI) and ii) application of a questionnaire to workers (part aimed at identifying workers - sex, age, level, degree and time of training, as well as time in institutional practice and another relevant to the concepts and practices with people with DS). Initially, the researcher contacted the heads of the institutions to gain access to the registration forms and schedule meetings with the workers. The meetings were held in the institutions themselves (in a reserved place), according to previous scheduling and availability of workers, lasting 15 to 20 minutes. Data collection took place from September 2018 to July 2019. The interviews were audio recorded and transcribed in full. The data subject to quantitative analysis were organized, tabulated and, afterwards, a descriptive analysis was performed. The qualitative data were treated according to the Collective Subject Discourse (CSD) technique, which consists of elaborating the collective discourse from individual discourses. The active search in the registration forms resulted in 70 people with DS (attended at EE schools and PHC) and the number of workers was 88, 31 from EE schools and 57 from PHC schools. Article 1 “SD: conceptions of workers from EE and APS” investigated the conceptions of workers from schools of EE and APS about the syndrome and people with DS. Article 2 “Living conditions and health needs of people with DS: a study from the institutions of Health and Education” analyzed the perception of workers about the living conditions and health needs of people with DS. The article 3 "Aging of people with DS: conception and performance of workers from EE and APS" was concerned with analyzing the conception and performance of workers from schools of EE and APS in the face of the aging of people with DS and the article 4 “The health and aging of people with DS: what PHC workers say” analyzed the PHC workers' understanding of health and the aging condition supported by AMRPI. It is believed that this study can be replicated in different realities in order to improve longitudinal care for people with DS, readjusting the planning of educational and health actions with this portion of the population that is also aging.As pessoas com Síndrome de Down (SD) estão vivendo mais, tendo em vista os avanços tecnológicos, especialmente, na área da Saúde. Contudo, essa população ainda é considerada vulnerável em seu processo de envelhecimento. Refletindo sobre a pertinência de uma atenção integral à saúde das pessoas com SD a partir da adolescência e buscando fornecer subsídios para um cuidado mais ampliado a tais pessoas, este estudo analisou a percepção de trabalhadores das Escolas de Educação Especial (EE) e da Atenção Primária à Saúde (APS), do município de Santa Maria/RS, sobre a conceituação, condições e necessidades de saúde das pessoas com SD, bem como sobre a atenção educacional e em saúde a elas prestadas. Trata-se de um estudo do tipo documental, exploratório e descritivo, com abordagem qualiquantitativa, realizado junto às fichas cadastrais de pessoas com SD a partir da adolescência e com trabalhadores das redes - pública e filantrópica - da Educação e da Saúde do município, destacando-se as escolas de EE especializadas em deficiência intelectual e as de APS. Para coleta de dados foram empregadas duas técnicas: i) pesquisa documental (busca ativa nas fichas cadastrais de pessoas com SD, elaboradas pelos trabalhadores das áreas citadas, a partir de instrumento previamente elaborado pelas pesquisadoras inspirado na Avaliação Multidimensional Rápida da Pessoa Idosa - AMRPI) e a ii) aplicação de um questionário junto aos trabalhadores (uma parte voltada à identificação dos mesmos - sexo, idade, nível, grau e tempo de formação, bem como tempo de atuação institucional e outra pertinente aos conceitos e práticas junto a pessoas com SD). Inicialmente a pesquisadora entrou em contato com os responsáveis das instituições para obter acesso às fichas cadastrais e agendar encontros com os trabalhadores. Os encontros foram efetuados nas próprias instituições (em local reservado), de acordo com agendamento prévio (respeitando-se a disponibilidade dos trabalhadores), tendo duração de 15 a 20 minutos. A coleta dos dados ocorreu de setembro de 2018 a julho de 2019. As entrevistas foram audiogravadas e transcritas na íntegra. Os dados passíveis de análise quantitativa foram organizados, tabulados e, após, realizada análise descritiva. Os dados qualitativos foram tratados segundo a técnica do Discurso do Sujeito Coletivo (DSC), que consiste em elaborar o discurso coletivo a partir de discursos individuais. A busca ativa nas fichas cadastrais resultou em 70 pessoas com SD (atendidas nas escolas de EE e na APS) e o número de trabalhadores foi de 88, sendo 31 das escolas de EE e 57 da APS. O artigo 1 “SD: concepções de trabalhadores da EE e da APS” investigou as concepções de trabalhadores das escolas de EE e APS sobre a síndrome e pessoas com SD. O artigo 2 “Condições de vida e necessidades de saúde de pessoas com SD: um estudo a partir das instituições de Saúde e Educação” analisou as percepções dos trabalhadores acerca das condições de vida e as necessidades de saúde das pessoas com SD. O artigo 3 “Envelhecimento de pessoas com SD: concepção e atuação de trabalhadores da EE e da APS ” ocupou-se em analisar as concepções e a atuação de trabalhadores das escolas de EE e da APS frente ao envelhecimento de pessoas com SD e o artigo 4 “A saúde e o envelhecimento de pessoas com SD: o que dizem os trabalhadores da APS” analisou a compreensão de trabalhadores da APS sobre saúde e a condição de envelhecimento apoiada na AMRPI. Acredita-se que este estudo possa ser replicado em diferentes realidades de modo a aprimorar o cuidado longitudinal junto a pessoas com SD, readequando-se o planejamento de ações educacionais e de saúde junto a essa parcela da população que também tem envelhecido rapidamente.Universidade Federal de Santa MariaBrasilFonoaudiologiaUFSMPrograma de Pós-Graduação em Distúrbios da Comunicação HumanaCentro de Ciências da SaúdeFedosse, Elenirhttp://lattes.cnpq.br/7207062592880064Lampert, Melissa AgostiniSantos Filha, Valdete Alves Valentins dosFilippin, Nadiesca TaísaMorgenstern, Juliane MarschallSilva, Rosane Seeger da2021-06-21T14:00:27Z2021-06-21T14:00:27Z2020-07-30info:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/doctoralThesisapplication/pdfhttp://repositorio.ufsm.br/handle/1/21161porAttribution-NonCommercial-NoDerivatives 4.0 Internationalhttp://creativecommons.org/licenses/by-nc-nd/4.0/info:eu-repo/semantics/openAccessreponame:Manancial - Repositório Digital da UFSMinstname:Universidade Federal de Santa Maria (UFSM)instacron:UFSM2022-04-05T12:42:10Zoai:repositorio.ufsm.br:1/21161Biblioteca Digital de Teses e Dissertaçõeshttps://repositorio.ufsm.br/ONGhttps://repositorio.ufsm.br/oai/requestatendimento.sib@ufsm.br||tedebc@gmail.comopendoar:2022-04-05T12:42:10Manancial - Repositório Digital da UFSM - Universidade Federal de Santa Maria (UFSM)false
dc.title.none.fl_str_mv O cuidado integral à saúde de pessoas com síndrome de Down: uma análise no contexto da educação especial e da atenção primária à saúde
Integral health care for people with Down syndrome: an analysis in the context of special education and primary health care
title O cuidado integral à saúde de pessoas com síndrome de Down: uma análise no contexto da educação especial e da atenção primária à saúde
spellingShingle O cuidado integral à saúde de pessoas com síndrome de Down: uma análise no contexto da educação especial e da atenção primária à saúde
Silva, Rosane Seeger da
Saúde
Educação
Cuidado integral
Síndrome de Down
Educação especial
Atenção primária à saúde
Health
Education
Comprehensive care
Down’s syndrome
Special education
Primary health care
CNPQ::CIENCIAS DA SAUDE::FONOAUDIOLOGIA
title_short O cuidado integral à saúde de pessoas com síndrome de Down: uma análise no contexto da educação especial e da atenção primária à saúde
title_full O cuidado integral à saúde de pessoas com síndrome de Down: uma análise no contexto da educação especial e da atenção primária à saúde
title_fullStr O cuidado integral à saúde de pessoas com síndrome de Down: uma análise no contexto da educação especial e da atenção primária à saúde
title_full_unstemmed O cuidado integral à saúde de pessoas com síndrome de Down: uma análise no contexto da educação especial e da atenção primária à saúde
title_sort O cuidado integral à saúde de pessoas com síndrome de Down: uma análise no contexto da educação especial e da atenção primária à saúde
author Silva, Rosane Seeger da
author_facet Silva, Rosane Seeger da
author_role author
dc.contributor.none.fl_str_mv Fedosse, Elenir
http://lattes.cnpq.br/7207062592880064
Lampert, Melissa Agostini
Santos Filha, Valdete Alves Valentins dos
Filippin, Nadiesca Taísa
Morgenstern, Juliane Marschall
dc.contributor.author.fl_str_mv Silva, Rosane Seeger da
dc.subject.por.fl_str_mv Saúde
Educação
Cuidado integral
Síndrome de Down
Educação especial
Atenção primária à saúde
Health
Education
Comprehensive care
Down’s syndrome
Special education
Primary health care
CNPQ::CIENCIAS DA SAUDE::FONOAUDIOLOGIA
topic Saúde
Educação
Cuidado integral
Síndrome de Down
Educação especial
Atenção primária à saúde
Health
Education
Comprehensive care
Down’s syndrome
Special education
Primary health care
CNPQ::CIENCIAS DA SAUDE::FONOAUDIOLOGIA
description People with Down Syndrome (DS) are living longer than expected, in view of technological advances, especially in the area of Health. However, this population is still considered vulnerable in its aging process. Reflecting on the relevance of comprehensive health care for people with DS from adolescence and seeking to provide subsidies for a broader care for these people, this study analyzed the perception of workers from Special Education Schools (EE) and Primary Care to Health (PHC), in the municipality of Santa Maria / RS, on the conceptualization, conditions and health needs of people with DS, as well as the educational and health care provided to such people. This is a documentary, exploratory and descriptive study, with a qualitative and quantitative approach, carried out with the registration forms of people with DS from adolescence and with workers from the public and philanthropic networks of Education and Health in the municipality, especially EE schools specializing in intellectual disabilities and PHC. For data collection, two techniques were employed: i) documentary research (active search in the registration forms of people with DS, prepared by workers in the mentioned areas, using an instrument previously prepared by the researchers inspired by the Rapid Multidimensional Assessment of the Elderly Person - AMRPI) and ii) application of a questionnaire to workers (part aimed at identifying workers - sex, age, level, degree and time of training, as well as time in institutional practice and another relevant to the concepts and practices with people with DS). Initially, the researcher contacted the heads of the institutions to gain access to the registration forms and schedule meetings with the workers. The meetings were held in the institutions themselves (in a reserved place), according to previous scheduling and availability of workers, lasting 15 to 20 minutes. Data collection took place from September 2018 to July 2019. The interviews were audio recorded and transcribed in full. The data subject to quantitative analysis were organized, tabulated and, afterwards, a descriptive analysis was performed. The qualitative data were treated according to the Collective Subject Discourse (CSD) technique, which consists of elaborating the collective discourse from individual discourses. The active search in the registration forms resulted in 70 people with DS (attended at EE schools and PHC) and the number of workers was 88, 31 from EE schools and 57 from PHC schools. Article 1 “SD: conceptions of workers from EE and APS” investigated the conceptions of workers from schools of EE and APS about the syndrome and people with DS. Article 2 “Living conditions and health needs of people with DS: a study from the institutions of Health and Education” analyzed the perception of workers about the living conditions and health needs of people with DS. The article 3 "Aging of people with DS: conception and performance of workers from EE and APS" was concerned with analyzing the conception and performance of workers from schools of EE and APS in the face of the aging of people with DS and the article 4 “The health and aging of people with DS: what PHC workers say” analyzed the PHC workers' understanding of health and the aging condition supported by AMRPI. It is believed that this study can be replicated in different realities in order to improve longitudinal care for people with DS, readjusting the planning of educational and health actions with this portion of the population that is also aging.
publishDate 2020
dc.date.none.fl_str_mv 2020-07-30
2021-06-21T14:00:27Z
2021-06-21T14:00:27Z
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url http://repositorio.ufsm.br/handle/1/21161
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http://creativecommons.org/licenses/by-nc-nd/4.0/
info:eu-repo/semantics/openAccess
rights_invalid_str_mv Attribution-NonCommercial-NoDerivatives 4.0 International
http://creativecommons.org/licenses/by-nc-nd/4.0/
eu_rights_str_mv openAccess
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dc.publisher.none.fl_str_mv Universidade Federal de Santa Maria
Brasil
Fonoaudiologia
UFSM
Programa de Pós-Graduação em Distúrbios da Comunicação Humana
Centro de Ciências da Saúde
publisher.none.fl_str_mv Universidade Federal de Santa Maria
Brasil
Fonoaudiologia
UFSM
Programa de Pós-Graduação em Distúrbios da Comunicação Humana
Centro de Ciências da Saúde
dc.source.none.fl_str_mv reponame:Manancial - Repositório Digital da UFSM
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institution UFSM
reponame_str Manancial - Repositório Digital da UFSM
collection Manancial - Repositório Digital da UFSM
repository.name.fl_str_mv Manancial - Repositório Digital da UFSM - Universidade Federal de Santa Maria (UFSM)
repository.mail.fl_str_mv atendimento.sib@ufsm.br||tedebc@gmail.com
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