Cotidiano, demandas e apoio social de famílias de crianças e adolescentes com autismo
Autor(a) principal: | |
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Data de Publicação: | 2013 |
Tipo de documento: | Dissertação |
Idioma: | por |
Título da fonte: | Repositório Institucional da UFSCAR |
Texto Completo: | https://repositorio.ufscar.br/handle/ufscar/6872 |
Resumo: | In each development phase of an individual suffering from a disability, different demands and challenges arise to the families and professionals involved in this reality. This study has aimed on identifying, through the standpoint of the families of autistic infants and teenagers, their daily experiences, demands, as well as the perceived social support while facing the reality of the care given to their children during three development phases. Twenty families of infants and teenagers with autism diagnostics have participated of this study, organized into three groups: Group 01 (with autistic children from 3 to 6 years old); Group 02 (with autistic children from 7 to 11 years old), and Group 03 (with autistic children from 12 to 18 years old). In order to gather data, there have been used semi structured interview routines, and Identification Questionnaires. Amongst the main results, there have been identified that the daily routine of the participant families is organized according to the autistic family members, their needs, and their difficulties. Such aspect has been observed within the domestic environment as well as in the external activities. Some of the identified difficulties are shared by all the studied groups, such as some of the daily routine difficulties, the ones in social activities, in the communication with these children, their dependency with their personal hygiene, among others. Specifically in each phase, the results of Group 01 have highlighted the families difficulties regarding the acceptance of the diagnostic, in Group 02 stands out the behavioral difficulties and the prejudice with this condition, and, in Group 03, the difficulties regarding adolescence specific issues, particularly the ones regarding the teenagers physiological development. Concerns with the children s future are perceived in all three groups, particularly the concern regarding who would take care of the children when the parents are not around anymore, which increases in intensity as the years pass by. In relation to the social support perceived by the main care givers, the family, their partners, siblings and grandparents of the individual with autism have been identified as the main sources. Besides that, some strategies for facing their problems have been identified in many situations of the families daily routine, where arrangements and possibilities are willful explored. There have been identified with the family members some demands for guidance in relation to the children s development, in how to help these individuals with their condition and with other subjects. In conclusion, this study have achieved its goals contributing for enlarging the knowledge in this area, providing benefits for future researches, actions and interventions planning for this population, as well as supporting planning public policies. |
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Minatel, Martha MoraisMatsukura, Thelma Simõeshttp://lattes.cnpq.br/36211131722777481151d112-a157-4e93-8e09-a0d326e3acf22016-06-02T20:44:12Z2013-05-202016-06-02T20:44:12Z2013-02-25MINATEL, Martha Morais. Cotidiano, demandas e apoio social de famílias de crianças e adolescentes com au. 2013. 103 f. Dissertação (Mestrado em Ciências Biológicas e da Saúde) - Universidade Federal de São Carlos, São Carlos, 2013.https://repositorio.ufscar.br/handle/ufscar/6872In each development phase of an individual suffering from a disability, different demands and challenges arise to the families and professionals involved in this reality. This study has aimed on identifying, through the standpoint of the families of autistic infants and teenagers, their daily experiences, demands, as well as the perceived social support while facing the reality of the care given to their children during three development phases. Twenty families of infants and teenagers with autism diagnostics have participated of this study, organized into three groups: Group 01 (with autistic children from 3 to 6 years old); Group 02 (with autistic children from 7 to 11 years old), and Group 03 (with autistic children from 12 to 18 years old). In order to gather data, there have been used semi structured interview routines, and Identification Questionnaires. Amongst the main results, there have been identified that the daily routine of the participant families is organized according to the autistic family members, their needs, and their difficulties. Such aspect has been observed within the domestic environment as well as in the external activities. Some of the identified difficulties are shared by all the studied groups, such as some of the daily routine difficulties, the ones in social activities, in the communication with these children, their dependency with their personal hygiene, among others. Specifically in each phase, the results of Group 01 have highlighted the families difficulties regarding the acceptance of the diagnostic, in Group 02 stands out the behavioral difficulties and the prejudice with this condition, and, in Group 03, the difficulties regarding adolescence specific issues, particularly the ones regarding the teenagers physiological development. Concerns with the children s future are perceived in all three groups, particularly the concern regarding who would take care of the children when the parents are not around anymore, which increases in intensity as the years pass by. In relation to the social support perceived by the main care givers, the family, their partners, siblings and grandparents of the individual with autism have been identified as the main sources. Besides that, some strategies for facing their problems have been identified in many situations of the families daily routine, where arrangements and possibilities are willful explored. There have been identified with the family members some demands for guidance in relation to the children s development, in how to help these individuals with their condition and with other subjects. In conclusion, this study have achieved its goals contributing for enlarging the knowledge in this area, providing benefits for future researches, actions and interventions planning for this population, as well as supporting planning public policies.Em cada fase do desenvolvimento do indivíduo com deficiência surgem demandas e desafios diferentes às famílias e profissionais envolvidos nesta realidade. O presente estudo teve por objetivo identificar, sob a ótica das famílias de crianças e adolescentes com autismo, as experiências cotidianas, suas demandas e o apoio social percebido diante da realidade de cuidados dispensados aos filhos em três fases do desenvolvimento. Participaram do estudo 20 famílias de crianças e adolescentes com diagnóstico de autismo, organizados em três grupos: Grupo 01 (com filhos autistas de 3 a 6 anos); Grupo 02 (com filhos autistas de 7 a 11 anos) e, Grupo 03 (com filhos autistas de 12 a 18 anos). Para a coleta de dados foram utilizados roteiros de entrevista semiestruturada e um Questionário de Identificação. Dentre os principais resultados se identificou que o cotidiano das famílias participantes se organiza em torno do membro com autismo, suas necessidades e dificuldades, aspecto observado tanto no ambiente doméstico como na realização atividades externas. Algumas dificuldades identificadas são comuns aos três grupos, como dificuldades no dia a dia e nas atividades sociais, na comunicação com a criança, na dependência nas atividades de autocuidado e higiene, dentre outras. Especificamente em cada fase, no Grupo 01 os resultados evidenciaram as dificuldades com a aceitação do diagnóstico, no Grupo 02 as dificuldades comportamentais e com o preconceito sofrido e, no Grupo 03 dificuldades em relação a questões específicas da adolescência, especialmente em relação ao desenvolvimento fisiológico. Preocupações com o futuro estão presentes nos três grupos, especialmente a preocupação de quem irá cuidar dos filhos quando os pais não estiverem mais presentes, a qual aumenta de intensidade com o passar dos anos. Em relação ao apoio social recebido pelos cuidadores, a família, destacandose o companheiro, irmãos e avós do indivíduo com autismo foram identificados como as principais fontes. Além disso, estratégias de enfrentamento foram verificadas em diversas situações do cotidiano familiar, onde arranjos e possibilidades são explorados com determinação. Demandas por orientações, em relação ao desenvolvimento do filho, em como ajudá-lo, sobre o autismo, entre outras, foram identificadas junto aos familiares. Conclui-se que o estudo atingiu os objetivos contribuindo para a ampliação do conhecimento na área, bem como fornecendo subsídios para futuras pesquisas, planejamento de ações e intervenções junto a esta população e para o planejamento de políticas públicas.Financiadora de Estudos e Projetosapplication/pdfporUniversidade Federal de São CarlosPrograma de Pós-Graduação em Terapia Ocupacional - PPGTOUFSCarBRTerapia ocupacionalAutismoFamíliaApoio socialCotidianoAutismFamilySocial supportOccupational therapyEverydayCIENCIAS DA SAUDE::FISIOTERAPIA E TERAPIA OCUPACIONALCotidiano, demandas e apoio social de famílias de crianças e adolescentes com autismoinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/masterThesis-1-193201651-62e3-414c-81da-17fcdc392ad9info:eu-repo/semantics/openAccessreponame:Repositório Institucional da UFSCARinstname:Universidade Federal de São Carlos (UFSCAR)instacron:UFSCARORIGINAL5115.pdfapplication/pdf624887https://repositorio.ufscar.br/bitstream/ufscar/6872/1/5115.pdf411c6eb0ae1361918eb5e2529d8434e9MD51TEXT5115.pdf.txt5115.pdf.txtExtracted texttext/plain0https://repositorio.ufscar.br/bitstream/ufscar/6872/2/5115.pdf.txtd41d8cd98f00b204e9800998ecf8427eMD52THUMBNAIL5115.pdf.jpg5115.pdf.jpgIM Thumbnailimage/jpeg5879https://repositorio.ufscar.br/bitstream/ufscar/6872/3/5115.pdf.jpga1ad130fe8c800a26a6427bd74b2d015MD53ufscar/68722023-09-18 18:31:48.758oai:repositorio.ufscar.br:ufscar/6872Repositório InstitucionalPUBhttps://repositorio.ufscar.br/oai/requestopendoar:43222023-09-18T18:31:48Repositório Institucional da UFSCAR - Universidade Federal de São Carlos (UFSCAR)false |
dc.title.por.fl_str_mv |
Cotidiano, demandas e apoio social de famílias de crianças e adolescentes com autismo |
title |
Cotidiano, demandas e apoio social de famílias de crianças e adolescentes com autismo |
spellingShingle |
Cotidiano, demandas e apoio social de famílias de crianças e adolescentes com autismo Minatel, Martha Morais Terapia ocupacional Autismo Família Apoio social Cotidiano Autism Family Social support Occupational therapy Everyday CIENCIAS DA SAUDE::FISIOTERAPIA E TERAPIA OCUPACIONAL |
title_short |
Cotidiano, demandas e apoio social de famílias de crianças e adolescentes com autismo |
title_full |
Cotidiano, demandas e apoio social de famílias de crianças e adolescentes com autismo |
title_fullStr |
Cotidiano, demandas e apoio social de famílias de crianças e adolescentes com autismo |
title_full_unstemmed |
Cotidiano, demandas e apoio social de famílias de crianças e adolescentes com autismo |
title_sort |
Cotidiano, demandas e apoio social de famílias de crianças e adolescentes com autismo |
author |
Minatel, Martha Morais |
author_facet |
Minatel, Martha Morais |
author_role |
author |
dc.contributor.authorlattes.por.fl_str_mv |
http://lattes.cnpq.br/3621113172277748 |
dc.contributor.author.fl_str_mv |
Minatel, Martha Morais |
dc.contributor.advisor1.fl_str_mv |
Matsukura, Thelma Simões |
dc.contributor.authorID.fl_str_mv |
1151d112-a157-4e93-8e09-a0d326e3acf2 |
contributor_str_mv |
Matsukura, Thelma Simões |
dc.subject.por.fl_str_mv |
Terapia ocupacional Autismo Família Apoio social Cotidiano |
topic |
Terapia ocupacional Autismo Família Apoio social Cotidiano Autism Family Social support Occupational therapy Everyday CIENCIAS DA SAUDE::FISIOTERAPIA E TERAPIA OCUPACIONAL |
dc.subject.eng.fl_str_mv |
Autism Family Social support Occupational therapy Everyday |
dc.subject.cnpq.fl_str_mv |
CIENCIAS DA SAUDE::FISIOTERAPIA E TERAPIA OCUPACIONAL |
description |
In each development phase of an individual suffering from a disability, different demands and challenges arise to the families and professionals involved in this reality. This study has aimed on identifying, through the standpoint of the families of autistic infants and teenagers, their daily experiences, demands, as well as the perceived social support while facing the reality of the care given to their children during three development phases. Twenty families of infants and teenagers with autism diagnostics have participated of this study, organized into three groups: Group 01 (with autistic children from 3 to 6 years old); Group 02 (with autistic children from 7 to 11 years old), and Group 03 (with autistic children from 12 to 18 years old). In order to gather data, there have been used semi structured interview routines, and Identification Questionnaires. Amongst the main results, there have been identified that the daily routine of the participant families is organized according to the autistic family members, their needs, and their difficulties. Such aspect has been observed within the domestic environment as well as in the external activities. Some of the identified difficulties are shared by all the studied groups, such as some of the daily routine difficulties, the ones in social activities, in the communication with these children, their dependency with their personal hygiene, among others. Specifically in each phase, the results of Group 01 have highlighted the families difficulties regarding the acceptance of the diagnostic, in Group 02 stands out the behavioral difficulties and the prejudice with this condition, and, in Group 03, the difficulties regarding adolescence specific issues, particularly the ones regarding the teenagers physiological development. Concerns with the children s future are perceived in all three groups, particularly the concern regarding who would take care of the children when the parents are not around anymore, which increases in intensity as the years pass by. In relation to the social support perceived by the main care givers, the family, their partners, siblings and grandparents of the individual with autism have been identified as the main sources. Besides that, some strategies for facing their problems have been identified in many situations of the families daily routine, where arrangements and possibilities are willful explored. There have been identified with the family members some demands for guidance in relation to the children s development, in how to help these individuals with their condition and with other subjects. In conclusion, this study have achieved its goals contributing for enlarging the knowledge in this area, providing benefits for future researches, actions and interventions planning for this population, as well as supporting planning public policies. |
publishDate |
2013 |
dc.date.available.fl_str_mv |
2013-05-20 2016-06-02T20:44:12Z |
dc.date.issued.fl_str_mv |
2013-02-25 |
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2016-06-02T20:44:12Z |
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info:eu-repo/semantics/publishedVersion |
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info:eu-repo/semantics/masterThesis |
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masterThesis |
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publishedVersion |
dc.identifier.citation.fl_str_mv |
MINATEL, Martha Morais. Cotidiano, demandas e apoio social de famílias de crianças e adolescentes com au. 2013. 103 f. Dissertação (Mestrado em Ciências Biológicas e da Saúde) - Universidade Federal de São Carlos, São Carlos, 2013. |
dc.identifier.uri.fl_str_mv |
https://repositorio.ufscar.br/handle/ufscar/6872 |
identifier_str_mv |
MINATEL, Martha Morais. Cotidiano, demandas e apoio social de famílias de crianças e adolescentes com au. 2013. 103 f. Dissertação (Mestrado em Ciências Biológicas e da Saúde) - Universidade Federal de São Carlos, São Carlos, 2013. |
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