Desenvolvimento de crianças com Trissomia 21: relação com o suporte social e a satisfação parental

Detalhes bibliográficos
Ano de defesa: 2024
Autor(a) principal: Montes, Kananda Fernanda
Orientador(a): Cia, Fabiana lattes
Banca de defesa: Não Informado pela instituição
Tipo de documento: Dissertação
Tipo de acesso: Acesso aberto
Idioma: por
Instituição de defesa: Universidade Federal de São Carlos
Câmpus São Carlos
Programa de Pós-Graduação: Programa de Pós-Graduação em Educação Especial - PPGEEs
Departamento: Não Informado pela instituição
País: Não Informado pela instituição
Palavras-chave em Português:
Palavras-chave em Inglês:
Área do conhecimento CNPq:
Link de acesso: https://repositorio.ufscar.br/handle/20.500.14289/19555
Resumo: Biological and external factors influence child development. Trisomy 21 is the most common biological alteration in humans, characterized as a genetically determined condition. Its particular characteristics can compromise the child's development, which in turn can cause changes in family dynamics. With this in mind, this study aimed to: (a) describe and relate social support and family parental satisfaction with the development of children with Trisomy 21 and (b) describe and relate sociodemographic data with child development, social support and family parental satisfaction of families of children with Trisomy 21. The participants in this study were 20 people responsible for children with Trisomy 21, aged between one and five years and 11 months. The evaluation measures were: Brazil Criteria Questionnaire, Social Support Questionnaire, Parental Satisfaction Scale, Operationalized Portage Inventory (OPI) and semi-structured interviews. The data was collected remotely, with the interview being the only instrument carried out asynchronously; the others were carried out in synchronous meetings. The qualitative data was obtained from the interview and the other instruments provided quantitative data which was analyzed using descriptive methods with the use of measures of central tendency and dispersion. Pearson's correlation test was used to correlate the variables. The main results were that none of the participants reported dissatisfaction with their parental role and, as a result, the level of parental satisfaction was high. The spouse was the most frequently mentioned support person and the items with the highest satisfaction averages were related to the perspective of the support people on the participants. The IPO data showed that the area of socialization was the one with the highest number of affirmative responses, while language was the area with the lowest performance by children with T21. Regarding correlations, parental satisfaction showed a positive correlation with all the areas of the IPO, and social support showed that the greater the number of supportive people, the better the development shown by the child with T21 in the areas of socialization and language. The age of the child revealed that the older the child, the lower the development in the areas of socialization, cognition, self-care and motor development. Physiotherapy, occupational therapy and speech therapy were the services that children with T21 received the most and psychological support was the service most requested by parents. The data from this study helps families to understand the impact that family variables have on the development of children with T21, as well as supporting early intervention programs with data on performance in each of the areas of child development.
id SCAR_655ee3d4f3e411ed1392332d44ff6d2b
oai_identifier_str oai:repositorio.ufscar.br:20.500.14289/19555
network_acronym_str SCAR
network_name_str Repositório Institucional da UFSCAR
repository_id_str
spelling Montes, Kananda FernandaCia, Fabianahttp://lattes.cnpq.br/5999108571365402http://lattes.cnpq.br/8673260963631826https://orcid.org/0000-0003-4787-2968https://orcid.org/0000-0002-0155-333175d0d622-c892-4a2a-8bdd-1dbace3e1cc82024-02-29T12:16:46Z2024-02-29T12:16:46Z2024-02-05MONTES, Kananda Fernanda. Desenvolvimento de crianças com Trissomia 21: relação com o suporte social e a satisfação parental. 2024. Dissertação (Mestrado em Educação Especial) – Universidade Federal de São Carlos, São Carlos, 2024. Disponível em: https://repositorio.ufscar.br/handle/20.500.14289/19555.https://repositorio.ufscar.br/handle/20.500.14289/19555Biological and external factors influence child development. Trisomy 21 is the most common biological alteration in humans, characterized as a genetically determined condition. Its particular characteristics can compromise the child's development, which in turn can cause changes in family dynamics. With this in mind, this study aimed to: (a) describe and relate social support and family parental satisfaction with the development of children with Trisomy 21 and (b) describe and relate sociodemographic data with child development, social support and family parental satisfaction of families of children with Trisomy 21. The participants in this study were 20 people responsible for children with Trisomy 21, aged between one and five years and 11 months. The evaluation measures were: Brazil Criteria Questionnaire, Social Support Questionnaire, Parental Satisfaction Scale, Operationalized Portage Inventory (OPI) and semi-structured interviews. The data was collected remotely, with the interview being the only instrument carried out asynchronously; the others were carried out in synchronous meetings. The qualitative data was obtained from the interview and the other instruments provided quantitative data which was analyzed using descriptive methods with the use of measures of central tendency and dispersion. Pearson's correlation test was used to correlate the variables. The main results were that none of the participants reported dissatisfaction with their parental role and, as a result, the level of parental satisfaction was high. The spouse was the most frequently mentioned support person and the items with the highest satisfaction averages were related to the perspective of the support people on the participants. The IPO data showed that the area of socialization was the one with the highest number of affirmative responses, while language was the area with the lowest performance by children with T21. Regarding correlations, parental satisfaction showed a positive correlation with all the areas of the IPO, and social support showed that the greater the number of supportive people, the better the development shown by the child with T21 in the areas of socialization and language. The age of the child revealed that the older the child, the lower the development in the areas of socialization, cognition, self-care and motor development. Physiotherapy, occupational therapy and speech therapy were the services that children with T21 received the most and psychological support was the service most requested by parents. The data from this study helps families to understand the impact that family variables have on the development of children with T21, as well as supporting early intervention programs with data on performance in each of the areas of child development.Fatores biológicos e externos influenciam o desenvolvimento infantil. A Trissomia 21 é a alteração biológica mais comum em humanos, caracterizada como uma condição geneticamente determinada. Suas características particulares podem comprometer o desenvolvimento da criança e que, por sua vez, podem provocar transformações na dinâmica familiar. Diante disso, este estudo teve por objetivos: (a) descrever e relacionar o suporte social e a satisfação parental familiar com o desenvolvimento de crianças com Trissomia 21 e (b) descrever e relacionar os dados sociodemográficos com o desenvolvimento infantil, o suporte social e a satisfação parental familiar de famílias de crianças com Trissomia 21. Foram participantes deste estudo, 20 responsáveis por crianças com Trissomia 21, com idades entre um e cinco anos e 11 meses. As medidas avaliativas foram: Questionário Critério Brasil, Questionário de Suporte Social, Escala de Satisfação Parental, Inventário Portage Operacionalizado (IPO) e entrevista semiestruturada. A coleta se deu de forma remota, sendo a entrevista o único instrumento realizado de forma assíncrona, os demais, foram realizados em encontros síncronos. Os dados qualitativos foram obtidos a partir da entrevista e os demais instrumentos forneceram dados quantitativos dos quais foram analisados por meio de métodos descritivos com o uso de medidas de tendência central e dispersão. Para a correlação das variáveis foi utilizado o teste de correlação de Pearson. Como principais resultados têm-se, nenhum participante apontou insatisfação com o papel parental e, com isso, o grau de satisfação parental se apresentou elevado. O cônjuge foi a pessoa suportiva mais mencionada e os itens com maiores médias de satisfação relacionavam-se com a perspectiva das pessoas suportivas sobre os participantes. Os dados do IPO mostraram que a área da socialização foi a que obteve o maior número de respostas afirmativas, enquanto a linguagem foi a área que apresentou menor desempenho pelas crianças com T21. Sobre as correlações, a satisfação parental apresentou correlação positiva com todas as áreas do IPO, o suporte social apontou que quanto maior o número de pessoas suportivas, melhor o desenvolvimento apresentado pela criança com T21 nas áreas de socialização e linguagem. A idade da criança revelou que quanto mais velha, menor o desenvolvimento nas áreas de socialização, cognição, autocuidado e desenvolvimento motor. A fisioterapia, terapia ocupacional e fonoaudiologia foram os atendimentos que as crianças com T21 mais recebiam e o acompanhamento psicológico o serviço mais solicitado pelos pais. Os dados deste estudo contribuem para que famílias possam ter conhecimento dos impactos que variáveis familiares têm em relação ao desenvolvimento da criança com T21, além de poder respaldar programas de intervenção precoce com os dados acerca dos desempenhos em cada uma das áreas do desenvolvimento infantil.Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES)88887.684763/2022-00porUniversidade Federal de São CarlosCâmpus São CarlosPrograma de Pós-Graduação em Educação Especial - PPGEEsUFSCarAttribution-NonCommercial-NoDerivs 3.0 Brazilhttp://creativecommons.org/licenses/by-nc-nd/3.0/br/info:eu-repo/semantics/openAccessEducação especialFamíliaSíndrome de DownDesenvolvimento infantilSpecial educationDown syndromeFamilyChild developmentCIENCIAS HUMANAS::EDUCACAO::TOPICOS ESPECIFICOS DE EDUCACAODesenvolvimento de crianças com Trissomia 21: relação com o suporte social e a satisfação parentalDevelopment of children with Trissomy 21: relationship with social support and parental satisfactioninfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/masterThesis500reponame:Repositório Institucional da UFSCARinstname:Universidade Federal de São Carlos (UFSCAR)instacron:UFSCARORIGINALDissertacao_Kananda_Fernanda_Montes.docx__1_.pdfDissertacao_Kananda_Fernanda_Montes.docx__1_.pdfDissertação de Mestradoapplication/pdf807031https://repositorio.ufscar.br/bitstreams/f98eceaf-acb5-4e92-b8c0-18af879a2c6a/download30030923df0d08b824c85d148145b406MD53trueAnonymousREADCC-LICENSElicense_rdflicense_rdfapplication/rdf+xml; charset=utf-8810https://repositorio.ufscar.br/bitstreams/c5b05c1b-f9ed-4282-bb8c-40faff677ff2/downloadf337d95da1fce0a22c77480e5e9a7aecMD52falseAnonymousREADTEXTDissertacao_Kananda_Fernanda_Montes.docx__1_.pdf.txtDissertacao_Kananda_Fernanda_Montes.docx__1_.pdf.txtExtracted texttext/plain148843https://repositorio.ufscar.br/bitstreams/094bdcdc-2827-4e8c-ad0d-53c804a208eb/downloadb8ec53776cbeb80f61bdd0ddb816fc8aMD54falseAnonymousREADTHUMBNAILDissertacao_Kananda_Fernanda_Montes.docx__1_.pdf.jpgDissertacao_Kananda_Fernanda_Montes.docx__1_.pdf.jpgIM Thumbnailimage/jpeg7296https://repositorio.ufscar.br/bitstreams/33b3002c-90fc-4034-b6b1-85db7410c32a/download3d410f3f2225a7fbef94d1987abc5020MD55falseAnonymousREAD20.500.14289/195552025-02-06 01:45:25.783http://creativecommons.org/licenses/by-nc-nd/3.0/br/Attribution-NonCommercial-NoDerivs 3.0 Brazilopen.accessoai:repositorio.ufscar.br:20.500.14289/19555https://repositorio.ufscar.brRepositório InstitucionalPUBhttps://repositorio.ufscar.br/oai/requestrepositorio.sibi@ufscar.bropendoar:43222025-02-06T04:45:25Repositório Institucional da UFSCAR - Universidade Federal de São Carlos (UFSCAR)false
dc.title.por.fl_str_mv Desenvolvimento de crianças com Trissomia 21: relação com o suporte social e a satisfação parental
dc.title.alternative.eng.fl_str_mv Development of children with Trissomy 21: relationship with social support and parental satisfaction
title Desenvolvimento de crianças com Trissomia 21: relação com o suporte social e a satisfação parental
spellingShingle Desenvolvimento de crianças com Trissomia 21: relação com o suporte social e a satisfação parental
Montes, Kananda Fernanda
Educação especial
Família
Síndrome de Down
Desenvolvimento infantil
Special education
Down syndrome
Family
Child development
CIENCIAS HUMANAS::EDUCACAO::TOPICOS ESPECIFICOS DE EDUCACAO
title_short Desenvolvimento de crianças com Trissomia 21: relação com o suporte social e a satisfação parental
title_full Desenvolvimento de crianças com Trissomia 21: relação com o suporte social e a satisfação parental
title_fullStr Desenvolvimento de crianças com Trissomia 21: relação com o suporte social e a satisfação parental
title_full_unstemmed Desenvolvimento de crianças com Trissomia 21: relação com o suporte social e a satisfação parental
title_sort Desenvolvimento de crianças com Trissomia 21: relação com o suporte social e a satisfação parental
author Montes, Kananda Fernanda
author_facet Montes, Kananda Fernanda
author_role author
dc.contributor.authorlattes.por.fl_str_mv http://lattes.cnpq.br/8673260963631826
dc.contributor.authororcid.por.fl_str_mv https://orcid.org/0000-0003-4787-2968
dc.contributor.advisor1orcid.por.fl_str_mv https://orcid.org/0000-0002-0155-3331
dc.contributor.author.fl_str_mv Montes, Kananda Fernanda
dc.contributor.advisor1.fl_str_mv Cia, Fabiana
dc.contributor.advisor1Lattes.fl_str_mv http://lattes.cnpq.br/5999108571365402
dc.contributor.authorID.fl_str_mv 75d0d622-c892-4a2a-8bdd-1dbace3e1cc8
contributor_str_mv Cia, Fabiana
dc.subject.por.fl_str_mv Educação especial
Família
Síndrome de Down
Desenvolvimento infantil
topic Educação especial
Família
Síndrome de Down
Desenvolvimento infantil
Special education
Down syndrome
Family
Child development
CIENCIAS HUMANAS::EDUCACAO::TOPICOS ESPECIFICOS DE EDUCACAO
dc.subject.eng.fl_str_mv Special education
Down syndrome
Family
Child development
dc.subject.cnpq.fl_str_mv CIENCIAS HUMANAS::EDUCACAO::TOPICOS ESPECIFICOS DE EDUCACAO
description Biological and external factors influence child development. Trisomy 21 is the most common biological alteration in humans, characterized as a genetically determined condition. Its particular characteristics can compromise the child's development, which in turn can cause changes in family dynamics. With this in mind, this study aimed to: (a) describe and relate social support and family parental satisfaction with the development of children with Trisomy 21 and (b) describe and relate sociodemographic data with child development, social support and family parental satisfaction of families of children with Trisomy 21. The participants in this study were 20 people responsible for children with Trisomy 21, aged between one and five years and 11 months. The evaluation measures were: Brazil Criteria Questionnaire, Social Support Questionnaire, Parental Satisfaction Scale, Operationalized Portage Inventory (OPI) and semi-structured interviews. The data was collected remotely, with the interview being the only instrument carried out asynchronously; the others were carried out in synchronous meetings. The qualitative data was obtained from the interview and the other instruments provided quantitative data which was analyzed using descriptive methods with the use of measures of central tendency and dispersion. Pearson's correlation test was used to correlate the variables. The main results were that none of the participants reported dissatisfaction with their parental role and, as a result, the level of parental satisfaction was high. The spouse was the most frequently mentioned support person and the items with the highest satisfaction averages were related to the perspective of the support people on the participants. The IPO data showed that the area of socialization was the one with the highest number of affirmative responses, while language was the area with the lowest performance by children with T21. Regarding correlations, parental satisfaction showed a positive correlation with all the areas of the IPO, and social support showed that the greater the number of supportive people, the better the development shown by the child with T21 in the areas of socialization and language. The age of the child revealed that the older the child, the lower the development in the areas of socialization, cognition, self-care and motor development. Physiotherapy, occupational therapy and speech therapy were the services that children with T21 received the most and psychological support was the service most requested by parents. The data from this study helps families to understand the impact that family variables have on the development of children with T21, as well as supporting early intervention programs with data on performance in each of the areas of child development.
publishDate 2024
dc.date.accessioned.fl_str_mv 2024-02-29T12:16:46Z
dc.date.available.fl_str_mv 2024-02-29T12:16:46Z
dc.date.issued.fl_str_mv 2024-02-05
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.citation.fl_str_mv MONTES, Kananda Fernanda. Desenvolvimento de crianças com Trissomia 21: relação com o suporte social e a satisfação parental. 2024. Dissertação (Mestrado em Educação Especial) – Universidade Federal de São Carlos, São Carlos, 2024. Disponível em: https://repositorio.ufscar.br/handle/20.500.14289/19555.
dc.identifier.uri.fl_str_mv https://repositorio.ufscar.br/handle/20.500.14289/19555
identifier_str_mv MONTES, Kananda Fernanda. Desenvolvimento de crianças com Trissomia 21: relação com o suporte social e a satisfação parental. 2024. Dissertação (Mestrado em Educação Especial) – Universidade Federal de São Carlos, São Carlos, 2024. Disponível em: https://repositorio.ufscar.br/handle/20.500.14289/19555.
url https://repositorio.ufscar.br/handle/20.500.14289/19555
dc.language.iso.fl_str_mv por
language por
dc.relation.confidence.fl_str_mv 500
dc.rights.driver.fl_str_mv Attribution-NonCommercial-NoDerivs 3.0 Brazil
http://creativecommons.org/licenses/by-nc-nd/3.0/br/
info:eu-repo/semantics/openAccess
rights_invalid_str_mv Attribution-NonCommercial-NoDerivs 3.0 Brazil
http://creativecommons.org/licenses/by-nc-nd/3.0/br/
eu_rights_str_mv openAccess
dc.publisher.none.fl_str_mv Universidade Federal de São Carlos
Câmpus São Carlos
dc.publisher.program.fl_str_mv Programa de Pós-Graduação em Educação Especial - PPGEEs
dc.publisher.initials.fl_str_mv UFSCar
publisher.none.fl_str_mv Universidade Federal de São Carlos
Câmpus São Carlos
dc.source.none.fl_str_mv reponame:Repositório Institucional da UFSCAR
instname:Universidade Federal de São Carlos (UFSCAR)
instacron:UFSCAR
instname_str Universidade Federal de São Carlos (UFSCAR)
instacron_str UFSCAR
institution UFSCAR
reponame_str Repositório Institucional da UFSCAR
collection Repositório Institucional da UFSCAR
bitstream.url.fl_str_mv https://repositorio.ufscar.br/bitstreams/f98eceaf-acb5-4e92-b8c0-18af879a2c6a/download
https://repositorio.ufscar.br/bitstreams/c5b05c1b-f9ed-4282-bb8c-40faff677ff2/download
https://repositorio.ufscar.br/bitstreams/094bdcdc-2827-4e8c-ad0d-53c804a208eb/download
https://repositorio.ufscar.br/bitstreams/33b3002c-90fc-4034-b6b1-85db7410c32a/download
bitstream.checksum.fl_str_mv 30030923df0d08b824c85d148145b406
f337d95da1fce0a22c77480e5e9a7aec
b8ec53776cbeb80f61bdd0ddb816fc8a
3d410f3f2225a7fbef94d1987abc5020
bitstream.checksumAlgorithm.fl_str_mv MD5
MD5
MD5
MD5
repository.name.fl_str_mv Repositório Institucional da UFSCAR - Universidade Federal de São Carlos (UFSCAR)
repository.mail.fl_str_mv repositorio.sibi@ufscar.br
_version_ 1851688830471503872