Caregivers of children with Down syndrome: reflections on the context of life
Autor(a) principal: | |
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Data de Publicação: | 2022 |
Outros Autores: | , , , , , , , , |
Tipo de documento: | Artigo |
Idioma: | por |
Título da fonte: | Research, Society and Development |
Texto Completo: | https://rsdjournal.org/index.php/rsd/article/view/30089 |
Resumo: | The objective was to understand the life context of caregivers of children with Down Syndrome. This is a descriptive, exploratory study with a qualitative approach. The study had as participants the caregivers of children with Down Syndrome who lived in a municipality in the interior of Ceará. Data collection was carried out using a semi-structured interview script. Data analysis was performed using the content analysis technique proposed by Minayo. The research complied with all the ethical precepts of Resolution 466/2012, which deals with studies carried out with human beings. Eleven caregivers of children with DS from zero to nine years old participated. It was possible to identify the caregivers' knowledge about the syndrome and capture several components belonging to the DS diagnosis that can interfere in the family's adaptation process, as well as situations of vulnerability that arise in front of it. Participants report negative experiences at the beginning of the discovery, however, when becoming familiar with DS, they express appreciation for the situation of having a child with DS. In relation to coping, the strength found in religion and family stands out. The research contributed to identify the weaknesses found in the diagnosis and the care dedicated to the child with DS by their caregiver, to expand the professionals' knowledge about the adaptation process in which the family with DS suffers. |
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Caregivers of children with Down syndrome: reflections on the context of lifeCuidadores de niños con síndrome de Down: reflexiones sobre el contexto de vidaCuidadores de crianças com síndrome de Down: reflexões sobre o contexto de vida Síndrome de DownCuidadoresFamíliaCuidado da criança.Síndrome de DownCuidadoresFamiliaCuidado de los niños.Down syndromeCaregiversFamilyChild care.The objective was to understand the life context of caregivers of children with Down Syndrome. This is a descriptive, exploratory study with a qualitative approach. The study had as participants the caregivers of children with Down Syndrome who lived in a municipality in the interior of Ceará. Data collection was carried out using a semi-structured interview script. Data analysis was performed using the content analysis technique proposed by Minayo. The research complied with all the ethical precepts of Resolution 466/2012, which deals with studies carried out with human beings. Eleven caregivers of children with DS from zero to nine years old participated. It was possible to identify the caregivers' knowledge about the syndrome and capture several components belonging to the DS diagnosis that can interfere in the family's adaptation process, as well as situations of vulnerability that arise in front of it. Participants report negative experiences at the beginning of the discovery, however, when becoming familiar with DS, they express appreciation for the situation of having a child with DS. In relation to coping, the strength found in religion and family stands out. The research contributed to identify the weaknesses found in the diagnosis and the care dedicated to the child with DS by their caregiver, to expand the professionals' knowledge about the adaptation process in which the family with DS suffers.El objetivo fue comprender el contexto de vida de cuidadores de niños con Síndrome de Down. Se trata de un estudio descriptivo, exploratorio con abordaje cualitativo. El estudio tuvo como participantes a los cuidadores de niños con Síndrome de Down que vivían en un municipio del interior de Ceará. La recolección de datos se llevó a cabo mediante un guión de entrevista semiestructurada. El análisis de los datos se realizó a través de la técnica de análisis de contenido propuesta por Minayo. La investigación cumplió con todos los preceptos éticos de la Resolución 466/2012, que trata de estudios realizados con seres humanos. Participaron once cuidadores de niños con SD de cero a nueve años. Fue posible identificar el conocimiento de los cuidadores sobre el síndrome y captar varios componentes pertenecientes al diagnóstico de SD que pueden interferir en el proceso de adaptación de la familia, así como situaciones de vulnerabilidad que se presentan frente a él. Los participantes relatan experiencias negativas al inicio del descubrimiento, sin embargo, al familiarizarse con el SD expresan aprecio por la situación de tener un hijo con SD. En relación al afrontamiento, se destaca la fortaleza que se encuentra en la religión y la familia. La investigación contribuyó a identificar las debilidades encontradas en el diagnóstico y el cuidado dedicado al niño con SD por su cuidador, para ampliar el conocimiento de los profesionales sobre el proceso de adaptación que sufre la familia con SD.Objetivou-se compreender o contexto de vida de cuidadores de crianças com Síndrome Down. Trata-se de um estudo descritivo, exploratório, com abordagem qualitativa. O estudo teve como participantes os cuidadores de crianças com Síndrome de Down que residiam em um município no interior do Ceará. A coleta foi feita por meio de um roteiro de entrevista semiestruturada. A análise de dados ocorreu através da técnica de análise de conteúdo proposta por Minayo. A pesquisa obedeceu a todos os preceitos éticos da Resolução 466/2012, que trata de estudos realizados com seres humanos. Participaram onze cuidadores de crianças com SD de zero a nove anos. Foi possível identificar o conhecimento dos cuidadores a respeito da síndrome e captar vários componentes pertencentes ao diagnóstico de SD que podem interferir no processo de adaptação da família, bem como situações de vulnerabilidade que surgem diante do mesmo. Os participantes referem experiências negativas no início da descoberta, no entanto, ao se familiarizar com a SD, expressam apreço sobre a situação de ter um filho com SD. Em relação ao enfrentamento, destaca-se a força encontrada na religião e na família. A pesquisa contribuiu para identificar as fragilidades encontradas no diagnóstico e os cuidados dedicados à criança com SD pelo seu cuidador, para ampliar o conhecimento dos profissionais acerca do processo de adaptação em que a família que possui portador de SD vivencia.Research, Society and Development2022-05-30info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfhttps://rsdjournal.org/index.php/rsd/article/view/3008910.33448/rsd-v11i7.30089Research, Society and Development; Vol. 11 No. 7; e43611730089Research, Society and Development; Vol. 11 Núm. 7; e43611730089Research, Society and Development; v. 11 n. 7; e436117300892525-3409reponame:Research, Society and Developmentinstname:Universidade Federal de Itajubá (UNIFEI)instacron:UNIFEIporhttps://rsdjournal.org/index.php/rsd/article/view/30089/26031Copyright (c) 2022 Joseilse Rosângela de Oliveira; Riani Joyce Neves Nóbrega; John Carlos de Souza Leite; Camila Almeida Neves de Oliveira; Natália Bastos Ferreira Tavares; Carlos André Lucas Cavalcanti; Isabela Rocha Siebra; Edilson Rodrigues de Lima; Luana Cecília Sousa da Silva; Mônica Daniele Brito Davidhttps://creativecommons.org/licenses/by/4.0info:eu-repo/semantics/openAccessOliveira, Joseilse Rosângela de Nóbrega, Riani Joyce Neves Leite, John Carlos de Souza Oliveira, Camila Almeida Neves de Tavares, Natália Bastos Ferreira Cavalcanti, Carlos André Lucas Siebra, Isabela Rocha Lima, Edilson Rodrigues de Silva, Luana Cecília Sousa da David, Mônica Daniele Brito 2022-06-06T15:12:05Zoai:ojs.pkp.sfu.ca:article/30089Revistahttps://rsdjournal.org/index.php/rsd/indexPUBhttps://rsdjournal.org/index.php/rsd/oairsd.articles@gmail.com2525-34092525-3409opendoar:2024-01-17T09:46:58.323535Research, Society and Development - Universidade Federal de Itajubá (UNIFEI)false |
dc.title.none.fl_str_mv |
Caregivers of children with Down syndrome: reflections on the context of life Cuidadores de niños con síndrome de Down: reflexiones sobre el contexto de vida Cuidadores de crianças com síndrome de Down: reflexões sobre o contexto de vida |
title |
Caregivers of children with Down syndrome: reflections on the context of life |
spellingShingle |
Caregivers of children with Down syndrome: reflections on the context of life Oliveira, Joseilse Rosângela de Síndrome de Down Cuidadores Família Cuidado da criança. Síndrome de Down Cuidadores Familia Cuidado de los niños. Down syndrome Caregivers Family Child care. |
title_short |
Caregivers of children with Down syndrome: reflections on the context of life |
title_full |
Caregivers of children with Down syndrome: reflections on the context of life |
title_fullStr |
Caregivers of children with Down syndrome: reflections on the context of life |
title_full_unstemmed |
Caregivers of children with Down syndrome: reflections on the context of life |
title_sort |
Caregivers of children with Down syndrome: reflections on the context of life |
author |
Oliveira, Joseilse Rosângela de |
author_facet |
Oliveira, Joseilse Rosângela de Nóbrega, Riani Joyce Neves Leite, John Carlos de Souza Oliveira, Camila Almeida Neves de Tavares, Natália Bastos Ferreira Cavalcanti, Carlos André Lucas Siebra, Isabela Rocha Lima, Edilson Rodrigues de Silva, Luana Cecília Sousa da David, Mônica Daniele Brito |
author_role |
author |
author2 |
Nóbrega, Riani Joyce Neves Leite, John Carlos de Souza Oliveira, Camila Almeida Neves de Tavares, Natália Bastos Ferreira Cavalcanti, Carlos André Lucas Siebra, Isabela Rocha Lima, Edilson Rodrigues de Silva, Luana Cecília Sousa da David, Mônica Daniele Brito |
author2_role |
author author author author author author author author author |
dc.contributor.author.fl_str_mv |
Oliveira, Joseilse Rosângela de Nóbrega, Riani Joyce Neves Leite, John Carlos de Souza Oliveira, Camila Almeida Neves de Tavares, Natália Bastos Ferreira Cavalcanti, Carlos André Lucas Siebra, Isabela Rocha Lima, Edilson Rodrigues de Silva, Luana Cecília Sousa da David, Mônica Daniele Brito |
dc.subject.por.fl_str_mv |
Síndrome de Down Cuidadores Família Cuidado da criança. Síndrome de Down Cuidadores Familia Cuidado de los niños. Down syndrome Caregivers Family Child care. |
topic |
Síndrome de Down Cuidadores Família Cuidado da criança. Síndrome de Down Cuidadores Familia Cuidado de los niños. Down syndrome Caregivers Family Child care. |
description |
The objective was to understand the life context of caregivers of children with Down Syndrome. This is a descriptive, exploratory study with a qualitative approach. The study had as participants the caregivers of children with Down Syndrome who lived in a municipality in the interior of Ceará. Data collection was carried out using a semi-structured interview script. Data analysis was performed using the content analysis technique proposed by Minayo. The research complied with all the ethical precepts of Resolution 466/2012, which deals with studies carried out with human beings. Eleven caregivers of children with DS from zero to nine years old participated. It was possible to identify the caregivers' knowledge about the syndrome and capture several components belonging to the DS diagnosis that can interfere in the family's adaptation process, as well as situations of vulnerability that arise in front of it. Participants report negative experiences at the beginning of the discovery, however, when becoming familiar with DS, they express appreciation for the situation of having a child with DS. In relation to coping, the strength found in religion and family stands out. The research contributed to identify the weaknesses found in the diagnosis and the care dedicated to the child with DS by their caregiver, to expand the professionals' knowledge about the adaptation process in which the family with DS suffers. |
publishDate |
2022 |
dc.date.none.fl_str_mv |
2022-05-30 |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion |
format |
article |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
https://rsdjournal.org/index.php/rsd/article/view/30089 10.33448/rsd-v11i7.30089 |
url |
https://rsdjournal.org/index.php/rsd/article/view/30089 |
identifier_str_mv |
10.33448/rsd-v11i7.30089 |
dc.language.iso.fl_str_mv |
por |
language |
por |
dc.relation.none.fl_str_mv |
https://rsdjournal.org/index.php/rsd/article/view/30089/26031 |
dc.rights.driver.fl_str_mv |
https://creativecommons.org/licenses/by/4.0 info:eu-repo/semantics/openAccess |
rights_invalid_str_mv |
https://creativecommons.org/licenses/by/4.0 |
eu_rights_str_mv |
openAccess |
dc.format.none.fl_str_mv |
application/pdf |
dc.publisher.none.fl_str_mv |
Research, Society and Development |
publisher.none.fl_str_mv |
Research, Society and Development |
dc.source.none.fl_str_mv |
Research, Society and Development; Vol. 11 No. 7; e43611730089 Research, Society and Development; Vol. 11 Núm. 7; e43611730089 Research, Society and Development; v. 11 n. 7; e43611730089 2525-3409 reponame:Research, Society and Development instname:Universidade Federal de Itajubá (UNIFEI) instacron:UNIFEI |
instname_str |
Universidade Federal de Itajubá (UNIFEI) |
instacron_str |
UNIFEI |
institution |
UNIFEI |
reponame_str |
Research, Society and Development |
collection |
Research, Society and Development |
repository.name.fl_str_mv |
Research, Society and Development - Universidade Federal de Itajubá (UNIFEI) |
repository.mail.fl_str_mv |
rsd.articles@gmail.com |
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1797052767069536256 |